Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS), and Chronic Myofascial Pain (CMP) Trigger Points

Does 2+2=3? The tender point model of fibromyalgia.

2012-01-26T08:06:00.000-08:00

This is a great question and one that has always confused me too. First, the tender point model was never meant to be the diagnostic hallmark which has evolved. It was originally developed as a tool to be used for analyzing participants for a study.

Most likely the tender points were paired to indicate that the tenderness and pain of fibromyalgia occurs on both sides of the body. I doubt there was any other significance because the criteria actually says one must have at least 13 of the 18 tender points for a diagnosis of FM. Thirteen tender points would mean that at least one of the pairs was broken up.

Excerpt ©
Unlike other disease processes, the symptoms of fibromyalgia affect all four quadrants of the body equally. In other words, tender points are found on both sides of the upper body (above the waist) and both sides of the lower body (below the waist). If there is a tender point in the left elbow, there will be another tender point in the same spot on the right elbow. Painful tender points are consistent and are considered chronic because they persist for a period of at least three months. (Cooper and Miller, pg. 9, 2010)

An exact description and tender point model can be found at http://www.thesethree.com/fibromyalgia/tender-points.php Be sure to browse the site for more important information.

Since the adoption of the tender point model as a diagnostic tool, it has met much criticism. Some patients have tender points in other areas of the body, more than 18 or less than 18, but still meet other criteria that have continued to evolve as we learn more about fibromyalgia. As a matter of fact there are those that think the tender point model should go by the wayside. The new preliminary proposed criteria only considers a WPI, wide-spread pain index. This concerns me because it is a reported complaint and the examiner will not have to put their hands on the patient at all. A physical exam has always been the greatest diagnostic tool the physician or nurse practitioner has.

Other considerations of the tender point model is the suspicion these are not tender points per se, but myofascial trigger points (MTPs) or pain in the MTP referral pattern of pain and neuralgia and other consequences. This has been shown in several studies. Read more about this at http://www.thesethree.com/cmp/chronic-myofascial-pain.php

Other helpful information can be found at In with the New, Out with the Old: Fibromyalgia diagnostics
Blogger http://fmcfstriggerpoints.blogspot.com/2011/08/in-with-new-out-with-old-fibromyalgia.html

And

Helping your doctor diagnose fibromyalgia
Blogger http://fmcfstriggerpoints.blogspot.com/2011/08/helping-your-doctor-diagnose.html

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

This blog is based my answer to the question “Why are all of the fibromyalgia tender points paired?” as fibromyalgia expert at ShareCare.com

Sleep oh sleep, where art thou? Could your fibromyalgia medications be causing insomnia?

2012-01-16T07:55:00.000-08:00

Yes, fibromyalgia medication could be causing your insomnia.

Cymbalta® (Duloxetine) and Savella® (milnacipran) which have been approved for treating fibromyalgia are in a class of drugs called selective serotonin and norepinephrine reuptake inhibitors (SNRIs) and insomnia is a side effect for both medications.

Also note worthy is that many fibromyalgia patients have migraine headaches as a comorbid condition. Selective serotonin and norepinephrine reuptake inhibitors (SNRIs) and selective serotonin reuptake inhibitors (SSRIs) can have serious, even life threatening interactions when combined with triptans such as zolmitriptan and sumatriptan used to treat migraine. If you are a migraineur, be sure to remind your doctor, close monitoring is suggested. If you have frequent migraine that requires abortive medications, I would certainly think twice before taking an SSRI or an SNRI. We are in an era where we must be our own best advocate.

Neurontin® (gabapentin) and Lyrica® (pregabalin) are anti-seizure drugs and are also used to treat the pain of fibromyalgia. Neither was found to have an insomnia effect in the studies except during the withdrawal process. However, there have been anecdotal complaints, which could suggest a paradoxical (opposite) reaction. When you have fibromyalgia, just about any reaction or sensitivity is possible. The important thing is to report any untoward effects to your doctor.

Because cognitive deficit and fatigue are common complaints by the fibromyalgia patient, medications to treat ADHD have been used to improve vigilance. This particular group of medications has a higher incidence of insomnia. With that said, there is also a group of patients that these type of medications help in slowing the brain response down.

We are each different, with different co-existing conditions and different responses to various medications. It is important to check with your pharmacist regarding your medications, any potential interactions, and side effects. Always report reactions to your pharmacist and healthcare provider and seek immediate help if you have an allergic reaction, swelling of the mouth, tongue or throat, which can block your airway.

This blog is based on my original answer at ShareCare, Could my fibromyalgia medications be causing my insomnia?

View my other answered questions as fibromyalgia expert.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Jack Backwards, Fibromyalgia, the stress response what you can do about it.

2012-01-08T08:05:00.000-08:00

Follow the link to my Share Care blog site.

http://www.sharecare.com/user/celeste-cooper/blogs/show/jack-backwards-fibromyalgia-the-stress-response-what-you-can-do

Chest wall pain mimic costochondritis in fibromyalgia: Successful treatment

2012-01-08T07:40:00.001-08:00

The muscles between the ribs are formed in such a way to allow our chest to expand and relax with breathing. It performs its job many times a day. The average adult breaths about 20 times per minute, that is a lot of work. Many fibromyalgia patients and some chronic fatigue (ME/CFS) patients complain of chest wall pain and restriction of movement. Often this restriction and pain is misdiagnosed by the health care provider as costochondritis, which is inflammation of the muscles between our ribs, usually seen when there is a viral or infectious process present.

I want to make this very clear; fibromyalgia is not considered an inflammatory disorder. It is a disruption in the central nervous system that is hyper-sensitized by the presence of peripheral pain generators such as chronic myofascial pain.

More often than not FM patients have comorbid myofascial trigger points (MTPs) of, , chronic myofascial pain (AKA, myofascial pain syndrome). These MTPs shorten the muscle involved cause pain and dysfunction, radiate pain (in some cases neuropathy and other symptoms) in a consistent pattern for the location of that specific trigger point. It is my belief and the belief of other experts that the chest wall pain found in FM is from intervertebral (between the ribs) myofascial trigger points, which restrict the motion of the chest wall during inspiration. This restriction then leads to ineffective breathing.

The treatment for chest wall pain found in FM is not medications for inflammation unless there is a known inflammatory condition present, (MTPs are not inflammatory in nature either). The treatment is trigger point therapy. If you can feel the tender painful knot apply 80% pressure with stroking motion for 30-60 sec. There can be many, because the rib cage is a lush environment because of the muscle complexity necessary to operate effectively. Myofascial trigger points can be behind bone or other large muscles, the rib bone in this case. This make it difficult to treat them, however, also helpful is deep breathing exercises such as Qi Gong.

Cellular oxidative stress has been indicated in fibromyalgia, even better reason to get that chest wall moving. We explain deep breathing techniques in our book and the comorbid condition, chronic myofascial pain at length, the dos and don’ts, therapies that can help, and what to avoid.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

December '11 Blogs for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain

2012-01-07T07:16:00.000-08:00

Following is a recap of my blogs on FM and CFID (ME/CFS) at both my profile as expert for Dr. Oz on Sharecare, and blogger. Please feel free to disseminate the information as you see fit for the better good of all FM and ME/CFS patients. In healing, harmony and hope for awareness.

A years worth of blogs can be found in the archives of the right column at Google Blogger. There might be something of particular interest there for you.

December 2011
These Three, Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain.

In a word – What we know about terms and fibromyalgia
http://www.sharecare.com/user/celeste-cooper/blogs/show/in-a-word-what-we-know-about-terms-and
http://fmcfstriggerpoints.blogspot.com/2011/12/in-word-what-we-know-about-terms-and.html

Ironic, the P in Substance P: The Relationship of Pain in Fibromyalgia
http://www.sharecare.com/user/celeste-cooper/blogs/show/ironic-the-p-in-substance-p-the-relationship-of-pain
http://fmcfstriggerpoints.blogspot.com/2011/12/ironic-p-in-substance-p-relationship-of.html

Ups and Downs; unpredictability of FM and CFID. How can I avoid a flare?
http://www.sharecare.com/user/celeste-cooper/blogs/show/ups-and-downs-unpredictability-of-fm-and-cfid-how-can
http://fmcfstriggerpoints.blogspot.com/2011/12/ups-and-downs-unpredictability-of-fm.html

Nerve to Muscle and the Role in Fibromyalgia
http://www.sharecare.com/user/celeste-cooper/blogs/show/nerve-to-muscle-and-the-role-in-fibromyalgia
http://fmcfstriggerpoints.blogspot.com/2011/12/nerve-to-muscle-and-role-in.html

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice

In a word – What we know about terms and fibromyalgia

2011-12-30T09:55:00.000-08:00

Historical terms for what we know today as fibromyalgia:

fibromyocitis
muscular rheumatism
tension myalgia/ tension rheumatism
psychogenic rheumatism
neurasthenia
fibrositis
(Cooper and Miller, 2010)

Fibromyositis

Fibromyositis is still alive and we now know it is not interchangeable with FM. It is an inflammatory condition of muscle associated with overgrowth of the connective tissue.

Muscular rheumatism

Muscular rheumatism is today used to describe what we know as polymyalgia rheumatica.

Sneak Peek, Polymyalgia Rheumatica©…
Because muscle pain and stiffness are associated with PMR, it could be confused with FM, CFID, or CMP. However, it is a different condition all together. Polymyalgia rheumatica is inflammatory in nature. Because muscle pain and stiffness are associated with PMR, it could be
confused with FM, CFID, or CMP. However, it is a different condition all together….
(Cooper and Miller, 2010, pg 104)

Tension myalgia

Tension myalgia implies muscle pain from tense muscles, Mayo Clinic says, “Tension myalgia is a diagnosis that has been in use at the Mayo Clinic for more than 40 years. The term describes a common muscle pain disorder that is conceptually similar to other muscle pain disorders such as fibrositis, fibromyalgia, and myofascial pain syndrome. This article outlines the history of these disorders and proposes "tension myalgia" as a term that unifies these separate diagnoses under one conceptual framework. Because the diagnostic criteria for tension myalgia have been vague, the Department of Physical Medicine and Rehabilitation at the Mayo Clinic has developed specific criteria for generalized, regional, and localized forms of this disorder. The recommended treatment approach includes reassurance, elimination of contributing factors, physical therapy to restore normal neuromuscular function, conditioning, and medications.” (Thompson, 1990)

It is my opinion that tension myalgia may be related to what we know today as myofascial pain syndrome (MPS) referred to in our book as chronic myofascial pain (CMP). MPS/CMP is a prevalent peripheral pain generator to the centralization of pain found in FM. To learn more about CMP see my website.
http://www.thesethree.com/cmp/chronic-myofascial-pain.php

Psychogenic rheumatism

Psychogenic rheumatism is an old term that implies muscle pain is a psychiatric disease. Unfortunately, despite the overwhelming evidence to the contrary, there are still those that would like to put us in this category.

Neurasthenia

Neurasthenia is an old term that denoted what they thought was a psychological disorder manifested by chronic fatigue and weakness, loss of memory, and widespread pain, thought to be from an exhausted nervous system. This definition of an old term certainly does relate to what some of us still experience from our healthcare providers today. I would like to think our practitioners know that the breakdown in the central nervous system in FM is a biological problem that is caused by the presence peripheral pain generators called myofasical trigger points. Though they knew nothing of MPS/CMP in those days (long before the work of Travell and Simons), somehow I feel they would have embraced modern studies better than they are received in our healthcare delivery system today.

Fibrositis

Fibrositis is still used as a synonym for fibromyalgia by some who haven’t kept up with the research. Even though “itis” is the suffix for inflammation and we now know that fibromyalgia is not an inflammatory disorder. It is a syndrome that affects the central nervous system, perpetuated by peripheral nerve to muscle deregulation.

This blog is based on my original answer at ShareCare, Are fibromyositis or fibrositis related to fibromyalgia? View my other answered questions as fibromyalgia expert.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Resources:

Cooper C and Miller J, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Vermont: Healing Arts, 2010

Thomson, TM, Tension myalgia as a diagnosis at the Mayo Clinic and its relationship to fibrositis, fibromyalgia, and myofascial pain syndrome. Mayo Clin Proc. 1990 Sep;65(9):1237-48.

Ironic, the P in Substance P: The Relationship of Pain in Fibromyalgia

2011-12-19T07:28:00.000-08:00

Substance P is one of two principle neurotransmitters (chemical messengers) in the central nervous system, the other being serotonin. Disturbance of these two important transmitters of information has an intense effect on pain perception. We know there is a chronic stress response in fibromyalgia and this constant strain on the body to reach well-being activates and causes hyperactivity of substance P.

Various neurotransmitters, including substance P, target cells across synaptic junctions between the cell’s axon and dendrite, binding to cellular receptors creating an action or electrical potential of the cell. These neurotransmitters create a union from a bounty of forerunners, such as amino acids, which are readily available from the diet. When neurotransmitters are disrupted, it can affect mood, sleep, cognitive function, and other symptoms present in fibromyalgia. These upsets also affect our modulation of the messaging system between the central nervous system and the peripheral and autonomic nervous systems.

BOOK EXCERPT - Chapter One Fibromyalgia Pain, Chronic Fatigue Immunodysfunction, and Chronic myofascial Pain from Trigger Points, subsection, Central Nervous System©

Substance P, which has been found in increased amounts in FM patients, is a peptide substance in spinal fluid (fluid that circulates in the central nervous system); its job is to regulate pain information. (Liu, et al, 2000).
Cooper and Miller, pg. 19 2010.

There are many types of neurotransmitters. Substance P is considered a nueropeptide and functions as a disseminator and interpreter of information, such as perception of pain. In response to pain the body engages in very specific interactions with opioid receptors in the central nervous system, and it can become quite complicated for us in this discussion, but suffice it to say, our body is constantly struggling to deal with painful impulses because our alarm system has become frayed with wear and tear. In chronic pain and widespread allodynia, this system is on perpetual high alert, sometimes called as wind-up, and eventually this exhausts the body’s ability to reach the balance it constantly strives to achieve.

The elevation of substance P in fibromyalgia patients leads many to the conclusion that FM is a disorder of heightened pain sensitivity. For those of us who have FM, we have pretty much already reached that conclusion.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.

This blog is based on my original answer at ShareCare, “What is substance P and how is related to fibromyalgia?”

View my other answered questions as fibromyalgia expert for Dr. Oz at Sharecare.

Other resources:

Khasar SG, Burkham J, Dina OA, Brown AS, Bogen O, Alessandri-Haber N, Green PG, Reichling DB, Levine JD. Stress induces a switch of intracellular signaling in sensory neurons in a model of generalized pain. J Neurosci. 2008 May 28;28(22):5721-30.

Z. Liu, M. Welin, B. Bragee, and F. Nyberg, “A high-recovery extraction procedure for quantitative analysis of substance P and opioid peptides in human cerebrospinal fluid,” Peptides 21, no. 6 (2000): 853–60.

Lyon P, Cohen M, Quintner J. An evolutionary stress-response hypothesis for chronic widespread pain (fibromyalgia syndrome). Pain Med. 2011 Aug;12(8):1167-78.

Stahl SM. Fibromyalgia--pathways and neurotransmitters. Hum Psychopharmacol. 2009 Jun;24 Suppl 1:S11-7.

Staud R, Spaeth M. Psychophysical and neurochemical abnormalities of pain processing in fibromyalgia. CNS Spectr. 2008 Mar;13(3 Suppl 5):12-7.

History the weapon for our arsenal in understanding fibromyalgia.

2011-12-12T11:26:00.000-08:00

Understanding the history is of anything is important because we draw knowledge, from previous experiences. History has provided us a foundation for tying the advances of medical science to pain experienced as far back as documentation began. My own grandmother was diagnosed with “muscular rheumatism” in the 1960’s, a term once used to describe fibromyalgia as we know it today.

Fibromyalgia History

Symptoms of what we know as fibromyalgia today were first described in the 1700's. The disorder its self was first observed and documented by a British surgeon William Balfour in 1816. In 1904, another British doctor by the name of Sir William Gowers recognized the same collection of symptoms and described this chronic soft tissue syndrome as fibromyocitis.
Finally, in 1981 a connection was made between fibromyocitis and non-inflammatory systemic symptoms and led to the description of the syndrome formerly described as, fibromyocitis, muscular rheumatism, tension myalgia, psychogenic rheumatism, tension rheumatism, neurasthenia, and fibrocitis. Today it is called fibromyalgia.

Twenty years ago, fibromyalgia in its pure definition was unrecognized, but the continued symptoms of diffuse muscle pain and fatigue described by people with fibromyalgia (FM) led patients on a quest for help. Today, though still lacking in acknowledgment by some, it can no longer be denied and history has changed the course of the future for those of us who live with the symptoms of this disabling disorder.

We know today that fibromyalgia is a disorder caused by a loss of orchestration of our central nervous system symphony, which normally strives to find balance, feedback, and action to help the body function in all ways, and that it is affected by the presence of peripheral pain generators. Without the work of Travell and Simons, we never would be able to make this connection.

A more in-depth exploration of the history of fibromyalgia is detailed in our book.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Ups and Downs; unpredictability of FM and CFID. How can I avoid a flare?

2011-12-07T10:53:00.000-08:00

Identifying comorbid or co-existing illnesses is important. Whether other illnesses are comorbid to fibromyalgia (meaning they occur more frequently with FM or CFID) or co-existing, they are great aggravators to the symptoms of fibromyalgia and chronic fatigue immunodysfunction, AKA ME/CFS, and to each other. Identifying other contributors to pain and dysfunction are important too. The short list is posture, sleep disruption, anxiety, sedentary lifestyles, ignoring perpetuating factors or known emotional and physical stressors, etc.

Excerpt Chapter Two©
We are susceptible to a flare when we deviate in any way from our personally tailored, multidisciplinary treatment plan. This worsening of symptoms does not mean FM is progressing from one step to the next in the disease process. “Unpredictable” is the best way to describe the way symptoms occur. It is literally a 24/7 job for all of us, and varies in difficulty from one patient to another. (Cooper and Miller, pg 23-24, 2010)

It may not always be easy to define what your aggravating factors are, but you can certainly get a lot further through work and perseverance than by ignoring your symptoms or having a health care worker dismiss them. You may have to do a juggling act. For instance, when I treat resistant
TrPs while also dealing with unexpected FM symptoms, it can cause a serious flare of body-wide pain…This, in turn, results in a flare of CFID, lowering my resistance to infection and increasing general malaise. Sometimes the best thing to do is treat the condition that needs the most
attention. (Cooper and Miller, pg. 75)

There really is no short answer to this question. We discuss this at length in Chapter two Communicating Your Health Care Needs: Identifying Aggravating and Alleviating Factors and Coexisting Conditions. Also included in this chapter are Relating Your Symptoms and Health History, Communicating with Your Physician and Other Health Care Providers, Medication Log, Symptom Inventory Sheet, Anatomical Diagram of Pain, and Health History Log

Based on my answer as Share Care Fibromyalgia expert, How can I avoid flare-ups from fibromyalgia?

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Nerve to Muscle and the Role in Fibromyalgia

2011-12-05T08:17:00.000-08:00

Research continues to tell us that fibromyalgia involves the breakdown of normal messaging in the brain, which is further sensitized by peripheral nervous system dysfunction, particularly in the muscle. This results in what is known as centralization of pain.

Chronic myofascial pain from myofascial trigger points which are caused by an excessive release of acetylcholine, a chemical neuro messenger, is prevalent in fibromyalgia and helps explain muscle pain and dysfunction. Myofascial trigger points are known as the great neurological imitators. When coupled with fibromyalgia this peripheral input further sensitizes the brain and it becomes a vicious cycle.

Learn more about chronic myofascial pain.

It is difficult to deny the brains ability to resurrect previous pain experiences or detach the emotional center from the physical response. Conditioning responses is important and why treatment takes a multidimensional approach. These various treatments, medication, stretching movement such as Yoga, gradual exercise after bringing myofascial trigger points under control, meditation, T’ai Chi for promoting balance input to the brain are all important for putting a tire tool in the spokes of this wheel spinning out of control between the brain and the periphery.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. Website

This blog is based on my original answer at ShareCare, What role do nerves play in fibromyalgia? View my other answered questions as fibromyalgia expert.

Resources

Affaitati G, Costantini R, Fabrizio A, Lapenna D, Tafuri E, Giamberardino MA.Effects of treatment of peripheral pain generators in fibromyalgia patients. Eur J Pain. 2011 Jan;15(1):61-9.

Bazzichi L, Rossi A, Massimetti G, Giannaccini G, Giuliano T, De Feo F, Ciapparelli A, Dell'Osso L, Bombardieri S.Cytokine patterns in fibromyalgia and their correlation with clinical manifestations. Clin Exp Rheumatol. 2007 Mar-Apr;25(2):225-30.

Bennett, R. Understanding Chronic Pain and Fibromyalgia: A Review of Recent Discoveries
National Fibromyalgia and Chronic Pain Association: The Science of Fibromyalgia http://fmcpaware.org/science-of-fm

Burgmer M, Gaubitz M, Konrad C, Wrenger M, Hilgart S, Heuft G, Pfleiderer B.
Decreased gray matter volumes in the cingulo-frontal cortex and the amygdala in patients with fibromyalgia. Psychosom Med. 2009 Jun;71(5):566-73. Epub 2009 May 4.

Carvalho LS, Correa H, Silva GC, Campos FS, Baião FR, Ribeiro LS, Faria AM, d'Avila Reis D.
May genetic factors in fibromyalgia help to identify patients with differentially altered frequencies of immune cells? Clin Exp Immunol. 2008 Dec;154(3):346-52.

Castro-Sanchez AM, Mataran-Penarrocha GA, Granero-Molina J et al. 2011. Benefits of massage-myofascial release therapy on pain, anxiety, quality of sleep, depression, and quality of life in patients with fibromyalgia. Evid Based Complement Alternat Med. 2011:561753.

Clauw DJ, Arnold LM, McCarberg BH; for the FibroCollaborative. The Science of Fibromyalgia Mayo Clin Proc. 2011 Sep;86(9):907-911.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

Hubbard JE. Myofascial Trigger Points: What Physicians Should Know about these Neurological Imitators Minn Med. 2010 May;93(5):42-5.

Lee YC, Nassikas NJ, Clauw DJ. The role of the central nervous system in the generation and maintenance of chronic pain in rheumatoid arthritis, osteoarthritis and fibromyalgia.
Arthritis Res Ther. 2011 Apr 28;13(2):211. [Epub ahead of print]

Lyon P, Cohen M, Quintner J. An evolutionary stress-response hypothesis for chronic widespread pain (fibromyalgia syndrome). Pain Med. 2011 Aug;12(8):1167-78. doi: 10.1111/j.1526-4637.2011.01168.x. Epub 2011 Jun 21.

Macedo JA, Hesse J, Turner JD, Ammerlaan W, Gierens A, Hellhammer DH, Muller CP.
Adhesion molecules and cytokine expression in fibromyalgia patients: increased L-selectin on monocytes and neutrophils. J Neuroimmunol. 2007 Aug;188(1-2):159-66. Epub 2007 Jun 28.

Petersel DL, Dror V, Cheung R. Central amplification and fibromyalgia: disorder of pain processing. J Neurosci Res. 2011 Jan;89(1):29-34.

Fibromyalgia, Dismissed, Misdiagnosed and Poorly Understood.

2011-11-28T13:09:00.000-08:00

The short answer is fibromyalgia is frequently dismissed because of inadequate information, education and awareness among those who primarily treat us, despite the plethora of information available. How do we get this material into the hands of the right people? You, the patient is often better read regarding your condition because you have a vested interest, your own health.

Misdiagnosis and neglectful treatment of overlapping conditions

Fibromyalgia can be misdiagnosed when a thorough history and physical are not completed. The preliminary proposed diagnostic criteria (PDC) for fibromyalgia disregard what clinicians have become comfortable with, the tender point count. While I agree that tender points may really be trigger points, and contribute to the centralization of pain causing widespread allodynia, I fear this new criteria will give permission to leave out one of the most valuable tools for diagnosis, “The physical exam.” If this criteria is allowed to stand with the American College of Rheumatology, it will only cause further misdiagnosis of FM and lead us down another decade of inappropriate treatment. The proposed criteria only consider a check list of widespread pain, and symptoms of various comorbid conditions (all jumbled up together as primary to FM. These symptoms may be attributed to an overlapping condition frequently found in fibromyalgia patients creating a missed diagnosis.

So what can you do about it?

Do regular self examinations and use the anatomical diagram and the many other helpful tools found in our book so that your physician or other healthcare provider (HCP) can visually relate to your experiences. If you find taut bands of muscle, or myofascial trigger points (there can be several in one band of muscles), mark it, then have your HCP feel it too. If you are experiencing unusual symptoms, note them on your log from your last visit and discuss them with your doctor, and ask if they might be attributed to one of the comorbid or overlapping conditions found in fibromyalgia. Approach the subject with documented studies or information related to symptoms such as those found in our book. Lead in with a statement such as, “You probably already know this, but I wanted to share it with you.” (Refer to the multiple resources for this blog located at the end, which are just a tip of the iceberg.) Remember, doctors and HCPs don’t take every medical journal. If they are the right doctor for you, they will be appreciative.

You can print off this blog and take it with you.

Research continues to point fibromyalgia in the direction of a neurological disorder with centralization of pain, which is exacerbated by peripheral pain stimulus. Myofascial pain syndrome, AKA chronic myofascial pain, from knotted up pieces of muscle fiber (trigger points) has been found in most fibromyalgia patients and is a peripheral pain stimulus. (See http://www.sharecare.com/user/celeste-cooper/blogs/show/how-is-fibromyalgia-related-to-myofascial-pain-syndrome ) In addition, comorbid conditions, such as, TMJ, restless leg syndrome, migraine, interstitial cystitis, all have this myofascial component so in essence FMers deal with a wheel spinning out of control, sending off pain impulses that keep us ramped up and ready for disaster.

Only better diagnostic criteria and education is going to solve this problem.

This blog is based on my answer as fibromyalgia expert at Share Care, “Why is fibromyalgia so frequently dismissed or misdiagnosed?”

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Resources:

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010

Bennett RM, Goldenberg DL. 2011. Fibromyalgia, myofascial pain, tender points and trigger points: splitting or lumping? Bennett and Goldenberg Arthritis Research & Therapy. 13:117.

Alonso-Blanco C, Fernández-de-las-Peñas C, Morales-Cabezas M, Zarco-Moreno P, Ge HY, Florez-García M. Multiple active myofascial trigger points reproduce the overall spontaneous pain pattern in women with fibromyalgia and are related to widespread mechanical hypersensitivity. Clin J Pain. 2011 Jun;27(5):405-13.

Brezinschek HP. Mechanisms of muscle pain : significance of trigger points and tender points.
Z Rheumatol. 2008 Dec;67(8):653-4, 656-7.

CDC/arthritis/fibromyalgia (accessed 11-28-2011). http://www.cdc.gov/arthritis/basics/fibromyalgia.htm

Cooper, C and Miller, J. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Vermont: Healing Arts Press, 2010.

HY Ge , Y Wang, B. Danneskiold-Samsøe , et. Al., “The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points.” Pain. 2009 Nov 13.

HY Ge , Wang Y, Fernández-de-Las-Peñas C, Graven-Nielsen T, Danneskiold-Samsøe B, Arendt-Nielsen L. Reproduction of overall spontaneous pain pattern by manual stimulation of active myofascial trigger points in fibromyalgia patients. Arthritis Res Ther. 2011 Mar 22;13(2):R48.

D. M. Niddam, R. C. Chan, S. H. Lee, T. C. Yeh, and J. C. Hsieh, “Central representation of hyperalgesia from myofascial trigger point,” NeuroImage 39 (2008): 1299–1306.

D.G. Simons, J.Travell, and L. S. Simons, Myofascial Pain and Dysfunction: The Trigger Point Manual, 2nd ed. (Baltimore: Williams and Wilkins, 1999.)
Fibromyalgia Network News/Overlaps with Fibromyalgia (accessed 11-28-2011).
http://www.fmnetnews.com/fibro-basics/related-conditions

Hubbard, JE. Myofascial trigger points. What physicians should know about these neurological imitators. Minn Med. 2010 May;93(5):42-5.

Jones KD, King LA, Mist SD, Bennett RM, Horak FB. Postural control deficits in people with fibromyalgia: a pilot study. Arthritis Res Ther. 2011 Aug 2;13(4):R127.

Kindler LL, Bennett RM, Jones KD. Central sensitivity syndromes: mounting pathophysiologic evidence to link fibromyalgia with other common chronic pain disorders. Pain Manag Nurs. 2011 Mar;12(1):15-24. Epub 2009 Dec 2.

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC.
Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print]

McCarberg BH. Clinical Overview of Fibromyalgia. Am J Ther. 2011 Feb 15. [Epub ahead of print]

Mira E, Martanez MP, Sanchez AI et al. 2011. When is pain related to emotional distress and daily functioning in fibromyalgia syndrome? The mediating roles of self-efficacy and sleep quality. Br J Health Psychol. 16(4):799-814.

National Institute of Health, NIAMS/fibromyalgia (accessed 11-28-2011).
http://www.niams.nih.gov/Health_Info/fibromyalgia/

Nickel JC, Tripp DA, Pontari M, Moldwin R, Mayer R, Carr LK, Doggweiler R, Yang CC, Mishra N, Nordling J.J Urol. Interstitial cystitis/painful bladder syndrome and associated medical conditions with an emphasis on irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome. 2010 Oct;184(4):1358-63. Epub 2010 Aug 17.

Staud R. Heart rate variability as a biomarker of fibromyalgia syndrome.
Fut Rheumatol. 2008 Oct 1;3(5):475-483.

S. Tang, H. Calkins, and M. Petri. Neuraly mediated hypotension in systemic lupus erythematosus patients with fibromyalgia. Rheumatology (Oxford) May 1, 2004 43(5):609-614
V
iola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" Journal of Clinical Sleep Medicine ,2010; 6: 423-427.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB. Fibromyalgia Criteria and Severity Scales for Clinical and Epidemiological Studies: A Modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. Rheumatol. 2011 Feb 1.

Ups and Downs; unpredictability of FM and ME/CFS. How can I avoid a flare during the holidays?

2011-11-21T07:29:00.000-08:00

Identifying comorbid (meaning they cluster with a particular disorder/disease) and co-existing illnesses is important, either way, they are great aggravators to the symptoms of fibromyalgia and myalgic encephalomyelitis /CFS (AKA, CFID) and to each other. Identifying other contributors to pain, fatigue and dysfunction are important too. The short list is poor posture, inadequate sleep, anxiety (particularly during the holidays), infection, sedentary lifestyles, overdoing etc.

Excerpt Chapter Two©

We are susceptible to a flare when we deviate in any way from our personally tailored, multidisciplinary treatment plan. This worsening of symptoms does not mean FM is progressing from one step to the next in the disease process. “Unpredictable” is the best way to describe the way symptoms occur. It is literally a 24/7 job for all of us, and varies in difficulty from one patient to another.
(Cooper and Miller, pg 23-24, 2010)

Excerpt Chapter Six ©

When you have a chronic illness, it’s easy to feel overloaded. Energy is a valuable commodity, and lack of it is a perpetuating factor in circuit overload. We, in our unique flock, often seek advice on how to deal with issues that cause us to feel so overwhelmed.
(Cooper and Miller, pg. 294, 2010)

As we come upon the holiday seasons, stress always seems to make the short list. Try to avoid known stressors over the holidays, stay within your identified limits, let others help, commit without excuses, but don’t over commit, and understand that sometimes it’s okay to say no, after all everybody does at some time or other. Most importantly make a conscious effort to enjoy and pick out moments that you shall treasure from your experience. For every down there is an up, it is the way of life. Stay on top of it.

Paste this to your mirror:
“This is the season to reflect, meditate, and find pleasure in the company of others.”

Learn more about managing stress in crisis:

Chapter 6 DEALING WITH CIRCUIT OVERLOAD, PG. 294 - 309
Brain Fog—Symptoms of Blowout before a Power Failure 295
Time Management—An Exercise in Energy Conservation 302
Crisis Management—Dealing with Major Life Events 307
Chapter Conclusion 309
Summary Exercise: Unloading the Gray Matter 309

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Share Care Fibromyalgia expert.
Healing, harmony and hope, Celeste

Fibromyalgia pleasing or unpleasing immune response, you decide.

2011-11-11T07:41:00.000-08:00

I met some resistance regarding my answer to the question, “Could fibromyalgia be caused by an aberrant immune response?” The comment suggested it was a waste of the readers time and requested that I “Stop repeating the same from 20 years ago. PLEASE!”

I believe it is important to validate my response to the question, so others understand why I answered the question the way I did.

YOU DECIDE.

Here is my original answer to “Could fibromyalgia be caused by an aberrant immune response?”

“Good question. It’s really about which came first the cart or the horse.
We do not know the cause of fibromyalgia, but we do know that there is centralization of pain. Comorbid conditions, those that occur more frequently with FM also indicates there is an upset in communication between the brain and the periphery, including the autonomic nervous system. Certainly, an aberrant immune response could exist, and research has been done and continues on this possibility, but it has also been hypothesized that FM is the result of a poor immune system.”

The research does continue today. Fibromyalgia is a comorbid condition to Lupus, RA, Sjorgrens, Hashimoto's, and AS, all autoimmune disorders. The following study was done in 2008, not 20 years ago. X. J. Caro, E. F. Winter, and A. J. Dumas, “A subset of fibromyalgia patients have findings suggestive of chronic inflammatory demyelinating polyneuropathy and appear to respond to IVIg,” Rheumatology 47, no. 2 (2008): 208–11

‎2011. Coaccioli S, Varrassi G. Chronic degenerative pain: an update on abdominal pain in comparison to rheumatic diseases. J Clin Gastroenterol. 2011 Aug;45 Suppl 2:S94-7." Extra-articular syndromes, notably fibromyalgia, can be a lifelong rheumatic condition characterized by widespread musculoskeletal pain and functional impairment, without any known structural or inflammatory cause. Irritable bowel syndrome (IBS) occurs in around half of patients with fibromyalgia raising the possibility of a possible overlapping or underlying pathophysiology. The dysfunction of bidirectional neural pathways and viscerovisceral cross-interactions within the central nervous system has been proposed as a possible central hypersensitization disorder responsible for the extraintestinal manifestations of IBS. Common inflammatory and molecular pathways may also be present in which a dysregulation of the immune system leads to a chronic inflammatory response. "

Possibly the most exciting research of late suggesting immune dysfunction is Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. “Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome.” J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print]
http://www.ncbi.nlm.nih.gov/pubmed/21615807
“FM-only patients showed no postexercise alterations in gene expression, but their pre-exercise baseline mRNA for two sensory ion channels and one cytokine were significantly higher than controls.”
Cytokine=referring to the immunomodulating agents (interleukins, interferons, etc.).

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. www.thesethree.com

Fibromyalgia and Chronic pain, Consistent Cousins, Shared Machinery

2011-11-08T07:58:00.000-08:00

A recent article “Evidence for Shared Pain Mechanisms in Osteoarthritis, Low Back Pain, and Fibromyalgia” suggests that chronic pain from these sources have a common effect called centralization. This means that the peripheral pain input to the brain causes it to become hypersensitive. You can view the article and the authors at PubMed

The keywords I see are peripheral stimulation and centralization. Where there are diseased joints or vertebrae pulling on muscle, trigger points can develop and we know myofascial trigger points are seen in FM.

Management of fibromyalgia includes identifying aggravating and perpetuating factors.

This includes bringing co-existing conditions under control, including the presence of myofascial trigger points, metabolic disturbances, sleep dysfunction, anxiety, restless leg syndrome, multiple chemical sensitivities, migraine and other comorbid conditions.

This blog is based on the question and my original answer to “How is fibromyalgia related to chronic pain,” at ShareCare.

View my other answered questions as expert at ShareCare. fibromyalgia expert

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.

Fibromyalgia the orphan, are our adoptive parents the right ones?

2011-10-26T08:14:00.000-07:00

Where do we belong? “Sometimes described as an “orphan” disorder, FM is much like an unclaimed waif. Finding its closest molecular relative will determine its scientific classification.” (Cooper and Miller, pg. 16).

Since the decision was made to classify fibromyalgia as a rheumatological disorder, I have felt ill at ease, because rheumatologists, while highly educated in clinical problems involving joints, soft tissues, autoimmune diseases, vasculitis, and inherited connective tissue disorders, their expertise does not involve conditions affecting the central nervous system or myofascial pain syndrome, both present in most fibromyalgia patients.

The research has exploded showing fibromyalgia is due to an upset in neurotransmission in the brain leading to “centralization” of pain, and most experts, including rheumatologists that treat FM, believe this. So we ask, “Should fibromyalgia be classified a neurological condition and thereby treated by neurologists instead of rheumatologists?” Well, yes and no, basically for the same reasons listed above. Most neurologists do not understand the role of myofascial pain caused by myofascial trigger points, what they are, or how they are best treated. Myofascial trigger points are peripheral pain generators for other conditions too, such as, dysfunctional pelvis, migraine, restless leg syndrome etc. The question is, are they willing to learn?

The proposed preliminary diagnostic criteria for fibromyalgia will move us from a musculoskeletal classification (for insurance coding, ICD) into somaticism of mental health. All evidence suggests FM is a disorder of the central nervous system, involving the autonomic and immune systems.

I don’t think the rheumatologists really knew what to do with us. We certainly weren’t a patient type they would ask for, because so little was known about FM at the time. But, some did hang in there with us, and we began to learn more about this once illusive illness. As the research evolves, I cannot say with certainty that FM belongs under the care of rheumatology. So for now, if you have a doctor that understands and is current with the research on FM, you are in the right place. Educate them as you can by sharing what you find regarding myofascial pain. Pain from myofascial trigger points has been found in 90% of FM patients. This is a significant piece of information.

Learn more about chronic myofascial pain at http://www.thesethree.com/cmp/chronic-myofascial-pain.php

Ask your doctor for a referral to physical therapists who are advanced trained to treat myofascial trigger points with various hands on treatments. Do your homework and check your area, doing a phone interview with the physical therapy group. Generally, sports physical therapy is your best bet.

Healing, Harmony and Hope, Celeste

This blog is based on my original answer at ShareCare, What qualifies a neurologist to treat fibromyalgia? View my other answered questions as fibromyalgia expert for Dr Oz.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Only one nerve left -The use of TENs units in FM

2011-10-20T17:05:00.000-07:00

T.E.N.S. stands for Transcutaneous Electrical Nerve Stimulation. It is a device that transmits electrical pulse to the underlying nerves to block the pain impulse.

As many as 90% of fibromyalgia patients have comorbid myofascial pain syndrome/chronic myofascial pain from myofascial trigger points, a muscle to nerve problem which perpetuates central sensitization in fibromyalgia. These myofascial trigger points are great neurological imitators. Blocking these painful impulses and input to the brain may help.

The TENs unit certainly does help me, but others tell me they have too much sensitivity. For these folks it is important to know that interferential and micro-current stimulators are available and have shown benefit. (This is discussed in length in chapter 4, “My Body is Matter and it Matters.”)

*There are specific cautions and contraindications for some patients, be sure to follow the advice of your therapist and the warnings included with the TENs unit

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.

Resources:

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

Hubbard JE. Myofascial Trigger Points: What Physicians Should Know about these Neurological Imitators Minn Med. 2010 May;93(5):42-5.

Löfgren M, Norrbrink C. Pain relief in women with fibromyalgia: a cross-over study of superficial warmth stimulation and transcutaneous electrical nerve stimulation. J Rehabil Med. 2009 Jun;41(7):557-62.

Nijs J, Meeus M, Van Oosterwijck J, Roussel N, De Kooning M, Ickmans K, Matic M. Treatment of central sensitization in patients with 'unexplained' chronic pain: what options do we have? Expert Opin Pharmacother. 2011 May;12(7):1087-98. Epub 2011 Jan 22.

Rodríguez-Fernández AL, Garrido-Santofimia V, Güeita-Rodríguez J, Fernández-de-Las-Peñas C. Effects of burst-type transcutaneous electrical nerve stimulation on cervical range of motion and latent myofascial trigger point pain sensitivity. Arch Phys Med Rehabil. 2011 Sep;92(9):1353-8.

Taming the Lion Inside, anger and chronic illness

2011-10-19T12:57:00.000-07:00

“Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.” ~Buddha

Anger is a natural stage to the grieving process, and one we must pass through to accept our new life with chronic illness.

Anger can be used constructively when put to the right task, at the right time, for the right reasons.

Anger should never be overdone in any case, sustained anger creates stress and stress is a great aggravator to our symptoms and block to healing.

How can I let go?

See chapter 5 The Power of Mind, Body, and Spirit; and
chapter 6 Dealing with Circuit Overload

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Cravings of and Staving off the Yeast Beast: Is diet assessment in order?

2011-10-12T15:39:00.000-07:00

The risk of candidiasis (yeast) overgrowth in Fibromyalgia and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is high.

THE WHY
Yeast is a fungi, and a certain amount is considered normal. It provides a natural flora in the mouth, skin, intestinal tract, and vagina, but when it overgrows, it can become the Incredible Hulk and cause a variety of infections.

Intestinal yeast overgrowth has been linked to small bowel bacterial overgrowth (SIBO). The symptoms of excessive gas, bloating, abdominal pain, and altered bowel habits are well known to the fibromyalgia and ME/CFS patient.

Thrush is an overgrowth of yeast in the mouth.

Insulin resistance and some medications (particularly antibiotics that knock out the normal growth environment of healthy amounts of yeast) may perpetuate yeast or leaky gut.

Yeast infections are exacerbated by excessive and unbalanced intake of sugar and carbohydrates causing bloating, brain fog, abdominal complaints, and the muscle aches connected with fibromyalgia and chronic myofascial pain. And chronic candidiasis syndrome has been identified as a possible trigger of chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS).

IS SOMETHING IN MY DIET PUTTING ME AT RISK?
The answer is YES, though our bodies do require some sugar and carbohydrates for cellular energy and brain function, excessive intake increases the risk of developing yeast overgrowth, particularly those who are immune compromised.

Sneak Peek from “Managing Your Diet,” Chapter Four, “My Body is Matter and it Matters”©

“The way food is converted, used, and stored depends upon the body’s metabolism. Sugar and complex carbohydrates trigger insulin release from the pancreas into the blood. Insulin plays a major role in carbohydrate metabolism and helps regulate the way our bodies utilize carbohydrates, lipids (fats), and amino acids (protein element) for cellular energy.” (Cooper and Miller, pg. 191)

WHAT CAN I DO?
Probiotics are recommended by specialists of the gastrointestinal tract, and eating yogurt with live cultures help maintain the natural flora. Equally important is a balanced diet, (discussed at length in Chapter Four, “My Body is Matter and it Matters.”)

See what Dr. Oz has to say at ShareCare, on daily protein intake. You will receive some great advice for taking control of some of your symptoms.

Related blog “SIBO, Yeast & Leaky Gut and YOU!

Resources:

D. W. Acheson and S. Luccioli, “Microbial-gut interactions in health and disease. Mucosal immune responses,” Best Practice & Research Clinical Gastroenterology 18, no. 2 (2004): 387–404.

R. E. Cater, 2nd, “Chronic intestinal candidiasis as a possible etiological factor in the chronic fatigue syndrome,” Medical Hypotheses 44, no. 6 (June 1995): 507–15.

Celeste Cooper and Jeff Miller, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (Vermont: Healing Arts Press, 2010).

R. S. Ivker and T. Nelson, Arthritis Survival: The Holistic Medical Treatment Program for Osteoarthritis (New York: Jeremy P. Tarcher, an imprint of Penguin Group, Inc., 2001).

T. Hung, J. L. Sievenpiper, A. Marchie, C. W. Kendall, and D. J. Jenkins, “Fat versus carbohydrates in insulin resistance, obesity, diabetes and cardiovascular disease,” Current Opinion in Clinical Nutrition & Metabolic Care 6, no. 2 (2003): 165–76.

Mehmet Oz, What Should Be My Required Daily Protein Intake? (accessed 9-7-11).

Devin. J. Starlanyl and Mary. E. Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual (Oakland, Calif.: New Harbinger Publications, Inc., 2001).

Arresting the tidal flow: Pelvic dysfunction in fibromyalgia.

2011-10-05T09:48:00.000-07:00

Pelvic dysfunction is prevalent in woman, but can also affect men. Sexual dysfunction and pain, impotence, bladder and uterine dysfunction, rectal pain and other disruptions involving the pelvis and surrounding structures and organs can be caused by the presence of chronic active myofascial trigger points. Since we now know these neurologic imitators exist in as many as nine out of ten fibromyalgia patients, and are body wide, we can better understand why what is, is. It warms my heart to know that all we talk about in the book is being validated providing hope.

Sneak Peek from page 111, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind Body Connection, Chapter Two “Communicating Your Healthcare Needs ©:

“Vulvodynia is pain in the external female genitalia. It can be caused by untreated pelvic floor trigger points. Oragel may help numb the pain of vulvodynia. As discussed under irritable bladder, there are pelvic floor treatments available. If you find TrPs in the pelvic floor (between the vagina and rectum, or the vulva, sitting on a therapeutic ball can be used to treat them.

I would suggest that you use a soft chair to avoid applying too much pressure to the area.”

If you have internal myofascial trigger points causing pain and dysfunction, chronic urinary tract infection, interstitial cystitis or any of the aforementioned problems, you won’t want to miss this report by pelvic messenger, Elisabeth Oas.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. www.thesethree.com

Snooze News - The conundrum of sleep deprivation

2011-10-01T08:19:00.000-07:00

Snooze, you lose – Loss of slow wave sleep progression

Disordered sleep is prevalent in both fibromyalgia and chronic fatigue syndrome/myalgic encephalitis. Loss of sleep and ineffective sleep patterns affect our mental, physical, emotional, and spiritual health and weaken our immune response.

Sometimes, many times, despite doing everything right a road block occurs and we literally lose our map to life. I believe that one should know how their sleep is going and we should have a sleep study, so integrative therapies can be implemented.

Disorder in bed court!

Sleep disorders are characterized by different circumstances. Sleep apnea for instance is an obstructive sleep disorder, and can co-exist with FM and CFS/ME. When this happens a person is deprived of oxygen, which is needed for cellular metabolism and energy. Disordered sleep, meaning that the normal cycles of sleep are not present, not maintaining sleep, and delayed sleep onset have been consistently reported by fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) patients.

Many of us seldom, if ever, enter deep stages of sleep, so I am including a link regarding slow wave sleep (SWS, which may in the future be defined as one stage). Wikipedia

We also have other co-existing conditions that cluster with both FM and ME/CFS, teeth grinding (bruxism), periodic limb movement (PLM), TMJ, sleep starts, and delayed sleep phase (inability to fall or maintain sleep). These can and do play a role in sleep quality, and I am advocating that an assessment for myofascial trigger points, RLS and PLM be included in the proposed diagnostic criteria for FM and a better explanation for “jaw pain.”

Sleep deprivation can impede healing, foster agitation, and when severe, cause psychosis. This might explain why so many of us have difficulty fighting off viruses and recovering from injury, which is normally repaired during sleep.

To medicate or not to medicate

According to the Wikipedia link, it seems alcohol (I am assuming not too much, though they don’t state such), THC, and SSRI’s, and possibly Xyrem can promote slow wave sleep (SWS), and benzodiazepines, such as Klonopin can inhibit SWS.

I bring up Klonopin specifically because it is often prescribed to help with the periodic limb movement (PLM) seen in the FM and CFS/ME patient. This leads me to conclude that the treatment for PLM may also be an aggravating factor for lack of SWS. Other treatment suggestions for PLM include, sleeping pills, anti-seizure medications and narcotic pain killers.

If I didn’t learn anything else from this investigation, it is that your best bet is to find a good sleep specialist that understands FM and ME/CFS. You and he/she can work together.

Promoting your circadian rhythm
Our circadian rhythm is orchestrated by two markers, melatonin concentration and core body temperature.

A Helpful Acronym for Sleep Hygiene ©

S - Schedule bedtime and stick to it
L - Limit physical activity before bedtime
U - Use comfort measures
M - Meditate (count those lambs)
B - Breathe
E - Eliminate stress and food (including caffeine 2-3 hours prior to bedtime)
R - Remember nothing—clear your mind (journal your to-do list so you can let go)
(Cooper and Miller, 2010, pg 167)

Harmony and Hope, Celeste
All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com

Resources:

Arthritis Today. Restless Leg Syndrome Linked to Fibromyalgia by Jennifer Davis (accessed, 11/18/10)

Cooper and Miller. Integrative Therapies for fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont, 2010.

A. R. Gold, F. Dipalo, M. S. Gold, and J. Broderick, “Inspiratory airflow dynamics during sleep in women with fibromyalgia,” Sleep 27, no. 3 (2004): 459–66.

M. Irwin, J. McClintick, C. Costlow, M. Fortner, J. White, and J. C. Gillin, “Partial night sleep deprivation reduces natural killer and cellular immune responses in humans,” Federation of American Societies for Experimental Biology 10, no. 5 (1996): 643–53.

T. Kato, J. Y. Montplaisir, F. Guitard, B. J. Sessle, J. P. Lund, and G. J. Lavigne, “Evidence that experimentally induced sleep bruxism is a consequence of transient arousal,” Journal of Dental Research 82, no. 4 (2003): 284–88.

B. Kundermann, J. C. Krieg, W. Schreiber, and S. Lautenbacher, “The effect of sleep deprivation on pain,” Pain Research & Management 9, no. 1 (2004): 25–32.

M. L. Mahowald and M. W. Mahowald, “Nighttime sleep and daytime functioning (sleepiness and fatigue) in less well-defined chronic rheumatic diseases with particular reference to the alpha-delta NREM sleep anomaly,” Sleep Medicine 1, no. 3 (2000): 195–207.

H. Moldofsky, “The significance, assessment, and management of nonrestorative sleep in fibromyalgia syndrome,” CNS Spectrums 13, no. 3 (2008): 22–26.

M. K. Millott and R. M. Berlin, “Treating sleep disorders in patients with fibromyalgia: exercise, behavior, and drug therapy may all help,” Journal of Musculoskeletal Medicine 14 (1993): 25–28.

T. Kato, J. Y. Montplaisir, F. Guitard, B. J. Sessle, J. P. Lund, and G. J. Lavigne, “Evidence that experimentally induced sleep bruxism is a consequence of transient arousal,” Journal of Dental Research 82, no. 4 (2003): 284–88.

A. Korszun, L. Sackett, Lundeen, E. Papadopoulos, C. Brucksch, L. Masterson, N. C. Engelberg, E. Hause, M. A. Demitrack, and L. Crofford, “Melatonin levels in women with fibromyalgia and chronic fatigue syndrome,” Journal of Rheumatology 26, no. 12 (1999): 2675–80.

H. K. Moldofsky, “Disordered sleep in fibromyalgia and related myofascial pain condition,” Journal of Clinical Dentistry, North America 45, no. 4 (2001): 701–13.

H. Moldofsky, “The assessment and significance of the sleep/waking brain in patients with chronic widespread musculoskeletal pain and fatigue syndromes,” Journal of Musculoskeletal Pain 15 Suppl. no. 13 (2007): [Myopain 2007 poster].

M. L. Mahowald and M. W. Mahowald, “Nighttime sleep and daytime functioning, sleepiness and fatigue, in well-defined chronic rheumatic diseases,” Journal of Clinical Sleep Medicine 1, no. 3 (2000): 179–93.

J. C. Rains and D. B. Penzien, “Sleep and chronic pain: challenges to the alpha- EEG sleep pattern as a pain specific sleep anomaly,” Journal of Psychosomatic Research 54, no. 1 (2003): 77–83.

E. R. Unger, R. Nisenbaum, H. Moldofsk, A. Cesta, C. Sammut M. Reyes, and W. C. Reeves, “Sleep assessment in a population-based study of chronic fatigue syndrome,” BMC Neurology 4, no. 1 (2004): 6.

E. Vazquez-Delgado, J. Schmidt, C. Carlson, R. DeLeeuw, and J. Okeson, “Psychological and sleep quality differences between chronic daily headache and temporomandibular disorders patients,” Cephalgia 24, no. 6 (2004): 446–54.

Based on blog “Wake Up Sleepy Head”

Weird or Wonderful Comrades: Neurontin and pain in fibromyalgia and myalgic encephalomyelitis

2011-09-28T10:53:00.000-07:00

Neurontin® was originally used to treat epilepsy, and later approved to treat diabetic neuropathy, and since has been used for treating fibromyalgia and chronic pain.

It’s efficacy in treating fibromyalgia pain gets mixed reviews.

My concern is the side effects. Neurontin® (gabapentin) functions therapeutically by blocking new excitatory synapse formation in the brain, (Cell), therefore, it could make brain fog worse. The target of any medication should be improve function, and in our case relieve pain and improve cognition so that we can participate in therapy, and interact with others. Many complain of a disconnection with reality when using Neurontin®, I am not sure this is considered improving function.

“You know you have brain fog when you walk back into the same room 5 times and still can't remember what you are doing there, but have that nagging sensation there’s a reason, and you do it several times a day, everyday.”

Since fibromyalgia has been related to central nervous system hypersensitivity, and a centralization effect also occurs in ME/CFS, it makes sense that a drug affecting the brain might help with blocking pain impulses. Fibromyalgia is aggravated by a common co-existing condition called myofascial pain syndrome (MPS), AKA chronic myofascial pain (CMP). This neurological imitator, could also explain some of the myalgias in ME/CFS. The associated neuralgia (nerve pain) is due to the presence of myofascial trigger points. Myofascial therapies and body work is the only thing that will affect a myofascial trigger point. This might help explain why Neurontin® is not as effective for treating pain in some patients.

Because impaired cognition and altered proprioception can be present in both FM and ME/CFS there are some red flags. Concern for impaired reasoning and risk of injury should be considered. Both postural orthostatic tachycardia (POTS) and nuerally mediated hypotension (NMH) are mediated in the brain, and since Neurontin ® crosses the blood brain barrier it is possible it could exacerbate these syndromes.

Improved function is the goal of all therapies and medications. if you are not seeing improvement, see a trained therapist that follows the teachings of Dr. Janet Travell and Dr. David Simons and report any dizziness, feelings of disconnection, worsening in ability to reason, word finding, sudden drops in blood pressure, or palpitations to your doctor. We don’t always have the “usual” side effects.

This blog is based on my answer to “How does Neurontin work to treat fibromyalgia pain?” As Fibromyalgia expert at Sharecare.com
Profile http://sharecare.com/user/celeste-Cooper

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press are for educational purposes and not meant to replace medical advice. www.TheseThree.com

Resources:

Bou-Holaigah I, Calkins H, Flynn JA, Tunin C, Chang HC, Kan JS, Rowe PC. Provocation of hypotension and pain during upright tilt table testing in adults with fibromyalgia. Clin Exp Rheumatol. 1997 May-Jun;15(3):239-46.

Eroglu C, Allen NJ, Susman MW, O'Rourke NA, Park CY, Ozkan E, Chakraborty C, Mulinyawe SB, Annis DS, Huberman AD, Green EM, Lawler J, Dolmetsch R, Garcia KC, Smith SJ, Luo ZD, Rosenthal A, Mosher DF, Barres BA. Gabapentin receptor alpha2delta-1 is a neuronal thrombospondin receptor responsible for excitatory CNS synaptogenesis. Cell. 2009 Oct 16;139(2):380-92. Epub 2009 Oct 8.

Galland BC, Jackson PM, Sayers RM, Taylor BJ.A matched case control study of orthostatic intolerance in children/adolescents with chronic fatigue syndrome. Pediatr Res. 2008 Feb;63(2):196-202.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

Giamberardino MA, Affaitati G, Fabrizio A, Costantini R. Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia. Curr Pain Headache Rep. 2011 May 5. [Epub ahead of print]
Staud R, Craggs J G, Perlstein W M, Robinson M E, and Price, DD, “Brain activity associated with slow temporal summation of C-fiber evoked pain in fibromyalgia patients and healthy controls,” European Journal of Pain (March

Hubbard JE. Myofascial Trigger Points: What Physicians Should Know about these Neurological Imitators. Minn Med. 2010 May;93(5):42-5.2008).

Ocon AJ, Messer Z, Medow M, Stewart J. Increasing orthostatic stress impairs neurocognitive functioning in Chronic Fatigue Syndrome with Postural Tachycardia Syndrome. Clin Sci (Lond). 2011 Sep 15. [Epub ahead of print]

Staud R. Autonomic dysfunction in fibromyalgia syndrome: postural orthostatic tachycardia. Curr Rheumatol Rep. 2008 Dec;10(6):463-6.

Aren’t we a motley crew? The diversity of chronic pain and its relationship to fibromyalgia.

2011-09-21T07:32:00.000-07:00

Chronic pain differs from acute pain in that chronic pain has worn out its job as an alarm system, and our body doesn’t send in the firemen to put out the fire. Instead it becomes disrespectful to treatments that otherwise work for an acute pain process. As a result our brain and body shuns input from the autonomic nervous system, especially in fibromyalgia, our brain fails to play nicely.

It appears there are similarities of fibromyalgia to other chronic pain in sharing the phenomenon of pain centralization. Chronic pain becomes diffuse and makes it difficult for the patient to relate their symptoms on the pain scale devised to assess acute pain. There is no tool for assessing chronic pain, but one is greatly needed. I wish the “acute pain 1-10 scale” and questions like, “where do you hurt today?” would go by the wayside. Assessment for response to treatments and medication should be directly related to ability to function. This holds true for all chronic pain patients. Once the pain becomes centralized, the pain scale presently used doesn’t document success or failure of therapeutics and in my opinion is a disservice to the patient.

A recent article “Evidence for Shared Pain Mechanisms in Osteoarthritis, Low Back Pain, and Fibromyalgia” (Staud, 2011) suggests that chronic pain from these sources share the effect of centralization. This means that the peripheral pain input to the brain causes hypersensitivity and the normal orchestration for homeostasis is disrupted. Keywords of the article are peripheral stimulation and centralization. Where there are diseased joints or vertebrae pulling on muscle, myofascial trigger points can develop. We know myofascial trigger points occur at an alarming rate in fibromyalgia, activation requires little stimulation, but they can occur in any person, any sports medicine specialist will tell you MTPs are not specific to fibromyalgia.

Management of fibromyalgia includes identifying aggravating and perpetuating factors. This includes bringing co-existing conditions under control, including the presence of myofascial trigger points, metabolic disturbances, sleep dysfunction, anxiety, restless leg syndrome, multiple chemical sensitivities, migraine and other comorbid conditions.

Centralization of pain is part of the chronic pain process and we need to do as much as we can to diminish harmful input to the brain that keeps it in this sensitized state. This should include treating the centralization in the brain itself, and bringing pain under control by whatever pain measures work for one particular patient.

This blog is based on the question and my original answer to “How is fibromyalgia related to chronic pain,” at ShareCare.

View my other answered questions as fibromyalgia expert
http://sharecare.com/user/celeste-Cooper

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.

Resources:

A. M. Abeles, M. H. Pillinger, B. M. Solitar, and M. Abeles. Narrative Review: The Pathophysiology of Fibromyalgia. Ann INter Med. May 15, 2007 146(10):726-734

Affaitati G, Costantini R, Fabrizio A, Lapenna D, Tafuri E, Giamberardino MA.Effects of treatment of peripheral pain generators in fibromyalgia patients. Eur J Pain. 2011 Jan;15(1):61-9.

A. M. Castro-Sanchez, G. A. Mataran-Penarrocha, N. Sanchez-Labraca, J. M. Quesada-Rubio, J. Granero-Molina, and C. Moreno-Lorenzo. A randomized controlled trial investigating the effects of craniosacral therapy on pain and heart rate variability in fibromyalgia patients. Clin Rehabil January 1, 2011 25(1):25-35

D. Clauw, M. Schmidt, D.Singer, A. Singer, P Katz∗, J. Bresette
The relationship between fibromyalgia and interstitial cystitis. Journal of Psychiatric Research. Volume 31, Issue 1, January-February 1997, Pages 125-131

J. E. Helms and C. P. Barone. Physiology and Treatment of Pain. Crit Care Nurse December 1, 2008 28(6):38-49

Kindler LL, Bennett RM, Jones KD. Central sensitivity syndromes: mounting pathophysiologic evidence to link fibromyalgia with other common chronic pain disorders. Pain Manag Nurs. 2011 Mar;12(1):15-24. Epub 2009 Dec 2. Review.

R, Staud. Evidence for Shared Pain Mechanisms in Osteoarthritis, Low Back Pain, and Fibromyalgia. Curr Rheumatol Rep. 2011 Aug 11. [Epub ahead of print]

S. Tang, H. Calkins, and M. Petri. Neurally mediated hypotension in systemic lupus erythematosus patients with fibromyalgia. Rheumatology (Oxford) May 1, 2004 43(5):609-614

Volcanic Activity: What we should know about cellular healing in fibromyalgia and myalgic encephalomyelitis

2011-09-16T08:57:00.000-07:00

Repeated research suggests there is deregulation of the hypothalamus-pituitary-adrenal axis (HPA) in FM and ME/CFS, cavalcading a dysfunctional cortisol release.

Cortisol, the stress hormone, responds to both physical and emotional stress. Our brains are powerful tools, and we know it helps us think but it is also affected by what we think, what we do, and how we react to physical and emotional stressors. The key is to identify our perpetuating factors and manage symptoms as best we can.

Micro cellular healing takes place during sleep; hijacked because of prevalent sleep dysfunction. Though the disruptions are thought to be different between fibromyalgia and myalgic encephalomyelitis patients, it is present in both, and impairs micro healing. Treating sleep with good sleep hygiene, (discussed at length in chapter 4) sleep routine is important, but many times the FM and ME/CFS patient needs help. Discuss your sleep problems with your physician, there are medications to help in addition to behavior changes. Will treating sleep cure you, no, but it will help with your ability to cope.

Sneak Peek: My body is Matter and It Matters, “Improving sleep.”©

Sleep retraining may be indicated when your internal clock is off kilter. Melatonin is a brain chemical produced when the brain receives a signal from the eye that daylight is ending. In contrast, when your brain perceives the light impulse, melatonin production shuts down and
allows you to awaken. This is why it is important to maintain regular sleep

Preparing for bed: ………………….(Cooper and Miller, 2010)

Identifying known physical and emotional stressors is the first step, but so is managing comorbid or co-existing conditions.

Positive feedback to the central nervous system is important for homeostasis and well-being. This includes treating the peripheral pain generators, myofascial trigger points, prevalent in FM, and viral or other known perpetuators in ME/CFS. Addressing life in a more positive manner can be difficult to do without help when are mired down in pain, fatigue, and cognitive dysfunction.

Sneak Peek: Crisis Management—Dealing with Major Life Events, Chapter 6, “Dealing with Circuit Overload” ©

1. We forget we are on a team. ….
2. Focus on the doable, not the impossible…
3. Things Take Time (TTT). Get this engraved on your watch crystal or the back of your cell phone….
4. Some things can’t be fixed….
5. In Chinese, the symbol for “crisis” literally translates as “dangerous opportunity.”…
6. “Get mean.” Understand that light and dark, rain and shine, birth and death are two sides of the same dance……. (Cooper and Miller, 2010)

“Initially we struggle to accept, and we may backslide from time to time, but acceptance is key to forward momentum, coping, and energy to define and defend our new life.” --Celeste Cooper

This blog is based on my original answer at ShareCare, What can I do to improve my fibromyalgia? View my other answered questions as fibromyalgia expert http://sharecare.com/user/celeste-Cooper

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press
Direct links at http://www.TheseThree.com

Resources:

Castro-Sanchez AM, Mataran-Penarrocha GA, Granero-Molina J et al. 2011. Benefits of massage-myofascial release therapy on pain, anxiety, quality of sleep, depression, and quality of life in patients with fibromyalgia. Evid Based Complement Alternat Med. 2011:561753.

Crofford, E. A. Young, N. C. Engleberg, A. Korszun, C. B. Brucksch, L. A. McClure, M. B. Brown, and M. A. Demitrack, “Basal circadian and pulsatile ACTH and cortisol secretion in patients with fibromyalgia and/or chronic fatigue syndrome,” Brain, Behavior, and Immunity 18, no. 4 (2004): 314–25.

E. Kasikcioglu, M. Dinler, and E. Berker, “Reduced tolerance of exercise in fibromyalgia may be a consequence of impaired microcirculation initiated by deficient action of nitric oxide,” Medical Hypotheses 66, no. 5 (2006): 950–52.

S. B. McMahon, W. B. Cafferty, and F. Marchand, “Immune and glial cell factors as pain mediators and modulators,” Experimental Neurology 192, no. 2 (2005):444–62.

K. J. Maher, N. G. Klimas, and M. A. Fletcher, “Chronic fatigue syndrome is associated with diminished intracellular perforin,” Clinical and ExperimentalImmunology 142, no. 3 (2005): 505–11.

M. Martinez-Lavin, “Biology and therapy of fibromyalgia. Stress, the stress response system, and fibromyalgia,” Arthritis Research & Therapy, no. 4 (2007): 216.

Mense S. 2010. How do muscle lesions such as latent and active trigger points influence central nociceptive neurons? J Musculoskel Pain. 18(4):348-353.

H. Moldofsky, “The assessment and significance of the sleep/waking brain in patients with chronic widespread musculoskeletal pain and fatigue syndromes,” Journal of Musculoskeletal Pain 15 Suppl. no. 13 (2007): 4 [Myopain 2007 poster].

Kishi A, Natelson BH, Togo F et al. 2010. Sleep stage transitions in chronic fatigue syndrome patients with or without fibromyalgia. Conf Proc IEEE Eng Med Biol Soc.1:5391-5394.

Wieseler-Frank, S. F. Maier, L. R. Watkins, “Glial activation and pathological pain,” Neurochemistry International 45, no. 2–3 (2004): 389–95.

Legs come to me, be still: Fibromyalgia and Restless Leg Syndrome are they Bed Buddies?

2011-09-12T07:09:00.001-07:00

If you have restless leg syndrome (RLS) you understand the creepy crawly sensation, the inability to keep your legs still, the nocturnal interrupter of peace and sleep, the unwanted bed buddy.

Restless leg syndrome, like fibromyalgia is believed to be caused by a disruption in the central nervous system. It frequently occurs with FM and is considered in the preliminary proposed criteria for diagnosing FM. Though not generally considered painful, it is quit annoying and rears its ugly head in the evening and bedtime hours.

Like many centralization disorders, RLS most likely has a myofascial component which initiates the event and disturbs the normal nighttime neurotransmitters (messengers to and from the brain), interrupting our normal stages of sleep. You know, the ones we don’t get, the ones that keep us from feeling refreshed even if we do sleep eight or nine hours.

Check it out:

Massage your legs; see if you feel any bumps that hurt when you press on them. If you do feel a trigger point, massage it with short strokes in one direction, holding about 80%pressure as you do. Because of the central nervous system component, the presence of trigger points may be an aggravating factor not only to FM, but to RLS also.

Periodic Limb movement (PLM) is its cohort. You may wake yourself in the night because of it, and these jerking, kicking, tear up the sheets movements are looked for in a sleep study. Periodic limb movement interferes with sleep quality and disrupts the sleep cycle, or it could be the other way around, the out of balance brain chemicals makes us move our legs in sleep 100's of times. Either way, if you have RLS you should have a sleep study done to “check for PLM.” You can have PLM without RLS, but frequently they are in cohabitation.

There are medications to treat RLS/PLM, some are affective, some not. We are all different, and just as a patient with hypertension, you might have to try several different ones, from several different classes of drugs before you find one that helps you. Paradoxically, some medications can cause RLS, and medications used to treat RLS may interfere with other medications you are taking . Be sure to talk this over with your doctor and pharmacist.

Harmony and Hope, Celeste

This blog is based on my original answer as fibromyalgia expert at ShareCare to the question, "Is Fibromyalgia Related to Restless Leg Syndrome?” View other answered questions on my profile at http://sharecare.com/user/celeste-Cooper

Resources:

Viola-Saltzman M, et al High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study. Journal of Clinical Sleep Medicine ,2010; 6: 423-427.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB. Fibromyalgia Criteria and Severity Scales for Clinical and Epidemiological Studies: A Modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. Rheumatol. 2011 Feb 1. [Epub ahead of print]

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. www.thesethree.com

Fatigue: Not all symptoms are attributed to fibromyalgia

2011-09-06T09:11:00.000-07:00

Fatigue is a common symptom of fibromyalgia; however, it can be caused by comorbid conditions, disorders that occur more frequently in FM. These might include hypothyroidism, nuerally mediated hypotension, postural orthostatic tachycardia, depression, or sleep disorder (including lack of slow wave progression.) Fibromyalgia can coexist with myalgic encephalomyelitis too.

It is important to know if you have a condition accompanying fibromyalgia that causes fatigue so it can be appropriately treated. For instance, you may have a co-existing condition (one that doesn't necessarily occur at a higher rate in FM) that causes fatigue, such as adrenal disease, anemia, mononucleosis, Lyme’s disease, narcolepsy, infection, heart disease, diabetes, hypoglycemia, insulin resistance or other metabolic/endocrine disease. There are a plethora of disorders that can cause fatigue.

Medications or drug interactions can also be the culprit. All of these should be ruled out or ruled in so appropriate action can be taken.

Be sure to report to your doctor if you also have:
• Anxiousness or feeling blue
• Blood in your stool or urine
• Breathlessness
• Changes in your stool
• Changes in your skin
• Chest Pain
• Dizzyness
• Excessive thirst and urination
• Fall asleep suddenly while doing a task
• Fainting when standing up too quickly
• Fever
• Flu-like symptoms that don’t go away
• Hair loss
• Heart rate changes, such as slow or palpations when you change positions
• Insomnia
• Lightheadedness when you bend over
• Night sweats
• Pale mucous membranes in the nose and mouth or skin
• Shortness of breath
• Started a new medication or supplement
• Swelling of the hands, feet or face
• Swollen lymph nodes
• Weight change

Keep a log of ALL your symptoms, not just those listed here. There are many helpful forms in our book for tracking and reporting symptoms, communication with your doctor, and providing documentation for your medical record. Use the tools to help track the benefits of new medications and treatments. All of these are important for you and your doctor or other healthcare provider.

This question is based on my original answer at ShareCare, “How Do I Know If My Fatigue Is Caused By Fibromyalgia?”

View my other answered questions as fibromyalgia expert
http://sharecare.com/user/celeste-Cooper

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. www.thesethree.com

Exercise with FM and ME/CFS, claiming your domain.

2011-09-01T07:05:00.000-07:00

Exercising when you have fibromyalgia is the epitome of right kind, amount, and time. So, what is too much, and what is enough? Stretching and aerobic exercise are a must, but going too fast or trying to exercise a muscle riddled with myofascial trigger points (see http://www.thesethree.com/cmp/chronic-myofascial-pain.php ) will only set you back, give you feelings of defeat and most likely cause you to quit.
Start low and go slow.

Exercise when you have chronic fatigue syndrome (ME/CFS) can cause more harm than good. Older studies have suggested a step program, however, if in a flare or if you are confined to bed, we now know it is contraindicated, and puts the already stressed out immune system in haywire mode. Movement should be based on tolerance. Know your body and its experiences from previous flares, move when you can to prevent atrophy of your muscles. There are many exercises that can be done in bed or with the assistance of a care giver.

Finding the right fitness routine for you is important; imagine the oil lubricating stiff muscles allowing them to flow freely as you move, instead of jerking and resisting one another like a sputtering car nearly on empty. In FM and ME/CFS, we do not seem to fit in our space, (lack of proprioception) walk into things, etc. so use care. Some days aren’t as good as others, identify perpetuating factors, such as trying to work in a routine on a physically or emotionally challenging day. Blame driven exercise is NOT productive. Heed the warning signs.

Certain times of the day have been identified; generally, the best time is late morning, early afternoon. Do your movement during your peak hours and not before going to bed. “If you drain your car battery completely, you cannot get enough energy to recharge it. The body, mind, and spirit work much the same way.” (from Integrative Therapies…..)

Remember, you are not in a marathon, doing more on Monday to make up for a Sunday is disaster. If exercise is a nasty word for you exchange the word with movement. T’ai Chi, stretching, walking, or bouncing on a yoga ball are all good ways to increase movement. It is important to enjoy the type of movement you select so you will stick to it.

"My second favorite household chore is ironing. My first being hitting my head on the top bunk until I faint."--Erma Bombeck

This blog is based on the question, What if my fibromyalgia causes too much pain to exercise? my original answer as fibromyalgia expert at ShareCare. View other answered questions on my profile at http://sharecare.com/user/celeste-Cooper

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press, and is not meant to replace medical advice. www.TheseThree.com

Should the government be micromanaging physicians and their ability to do their job managing pain?

2011-08-31T11:21:00.000-07:00

Please follow the link from the American Pain Foundation regarding a Seattle Times article on stringent laws being proposed for pain management. http://action.painfoundation.org/site/MessageViewer?em_id=13682.0&printer_friendly=1
You won't want to miss this one, and you better believe I left a comment as follows.

Since when does the government think they can tell a physician how to be a doctor? I am a chronic pain patient with severe osteoarthritis and inoperable severe spinal stenosis and premature degeneration. I also have fibromyalgia.

The trend set by pharmaceuticals is to treat pain with antidepressants and antiepileptic drugs because it raises their bottom line. I have tried them all and they either interact with my medications to treat my migraines, or leave me like a zombie, not to mention that during the courting period, they empty my pocketbook. Opioids are tried and true pain relievers that when used appropriately, improve function, but leave little room for profit margins. They are proven to be more effective in the treatment of acute and chronic pain.

Education is needed, some will become addicted, not to be confused with pseudoaddiction, options for education and medication vacations are in order, not government influence. I suppose the option is to treat all pain with antidepressants. I worked as an ER nurse for 20 years. I propose that these law makers or a close family member will one day have to make an ER visit for an accident that causes pain. I want to be there to see their reaction when the ER doctor explains the only thing he/she has to offer is a medication for depression or seizure. What happened to common sense?

Harmony and Hope, Celeste

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press are for educational purposes and not meant to replace medical advice. www.TheseThree.com

One Day at a Time: symptoms, age, and FM.

2011-08-29T07:04:00.000-07:00

I have not seen data on ruthlessness of fibromyalgia related by age. However, I know a great deal of younger FM patients who have severe symptoms, so anecdotally, I would say, that age is not a factor in the harshness of this painful and debilitating disorder.

As a patient aging with FM, I believe perpetuating factors and other co-existing conditions such as arthritis, and spinal diseases, metabolic disturbances and other disorders associated with aging to play a role in overall coping. The presence of untreated myofascial trigger points in muscles that don’t have the ability to build do to aging also make it more difficult to call a truce with fibromyalgia. Though I do believe fibro and ME/CFS don’t know the meaning of a treaty at any age.

The key is to identify perpetuating and aggravating factors and bring them under control as best you can. Try to participate in a mild stretching program you enjoy, such as Yoga or T’ai Chi. These activities have no age barrier, they even make Yoga props for those of us challenged by joint disease, and movement meditation has shown to help with balance and with the loss of proprioception associated with FM and chronic fatigue syndrome, ME/CFS. (See Chapter Two “Communicating Your Healthcare Needs.”)

Proprioception = Your own sense of where your body parts are in relationship to your environment when moving.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press are for educational purposes and not meant to replace medical advice. www.TheseThree.com

This question is based on my original answer as fibromyalgia expert at ShareCare, “Do fibromyalgia symptoms differ by age?”
http://sharecare.com/user/celeste-Cooper

Fibromyalgia is complicated, but are there possible complications?

2011-08-25T08:07:00.000-07:00

The greatest risk for complications in fibromyalgia is misdiagnosis, not identifying and treating the comorbid conditions in fibromyalgia, or drug interactions that can occur with other medications, and over the counter drugs, herbs and supplements.

The many comorbid conditions with FM have specific treatments. For instance, there is a higher incidence of hypothyroidism, and the medications used to treat FM will not treat hypothyroidism, or medications used to treat and IBS attack or medications to treat interstitial cystitis or Leaky Gut Syndrome might interfere with or exacerbate side effects of other medications, and this is just an example.

MTP = Myofascial trigger point, a knotted up piece of muscle fiber that is easily felt unless beneath bone or other muscle. It shortens the muscle involved causing pain and dysfunction and radiates pain and other symptoms including neuropathies in a specific pattern between patients.

The coexistence of chronic myofascial pain from myofascial trigger points (MTPs) occur frequently, according the research. The treatments for MTPs require hands on therapy, and when not considered, the pain can be a great complication in the life of a patient with FM. Not only are they a great source of our pain, MTPs are peripheral pain generators that keep the FM brain hyper sensitized.

Talk with your doctor about known comorbid and coexisting conditions. There are many helpful tools to help you understand the many conditions in chapter two of our book, “Communicating Your Healthcare Needs,” including Relating Your Symptoms and Health History, Identifying Aggravating and Alleviating Factors, Coexisting Conditions, Communicating with Your Physician and Other Health Care Providers, a Summary Exercise: Clear Expressions , Medication Log, Symptom Inventory Sheet, Anatomical Diagram of Pain, and Health History Log.

This blog is based on my original answer to “What are possible complications for fibromyalgia?” as fibromyalgia expert at ShareCare.

View my other answered questions as fibromyalgia expert
http://sharecare.com/user/celeste-Cooper

Resources:

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010.

Bazzichi L, Rossi A, Giuliano T, De Feo F, Giacomelli C, Consensi A, Ciapparelli, Consoli G, Dell’Osso L, and Bombardieri S. “Association between thyroid autoimmunity and fibromyalgic disease severity .” Clinical Rheumatology Volume 26, Number 12, 2115-2120, DOI: 10.1007/s10067-007-0636-8

C Cooper, RN and J Miller, PhD. (2010) Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Vermont: Healing Arts Press.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

Hubbard JE. Myofascial Trigger Points: What Physicians Should Know about these Neurological Imitators Minn Med. 2010 May;93(5):42-5.

This blog is for educational purposes and not meant to replace medical advice. www.thesethree.com

Where we are headed understanding the differences in FM and ME/CFS

2011-08-24T07:53:00.001-07:00

What we know is that the first complaint of fibromyalgia is muscle pain and the primary reason ME/CFS patient seek treatment, is fatigue. Though in neither case is this where it stops.

Fibromyalgia and ME/CFS do share some common comorbid conditions, and both are thought to have central nervous system disruption, however, disruptions are different between the two, and newer research is showing a stronger connection to viral, infectious and immune overload in ME/CFS, and research on FM repeats the findings of previous studies on the disruption of the hypothalamus-pituitary-adrenal axis, oxidative stress, which is also seen in ME/CFS, and the peripheral pain generation by myofascial trigger points that keeps the central nervous system sensitized to pain impulses.

There are specific biological differences between FM and CFS/ME. Both are considered neuroendocrineimmune disorders, as is Lyme’s disease, Gulf War Syndrome, Lupus, and others. Though they fall under the same umbrella, they are different.

We explain the differences and the similarities, why they are confused and the importance in having the right diagnosis in Chapter One, “All about Fibromyalgia, Chronic Fatigue Immunodysfunction—The Muster to Master, and Chronic Myofascial Pain—Nerve to Muscle, and Double Cross. There are also checklists for each disorder that you can use to inventory your symptoms and provide to your physician or other healthcare provider. There is also a glossary of terms that describe pain.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press are for educational purposes and not meant to replace medical advice.

This blog is based on my original answer at ShareCare to, “How are fibromyalgia and chronic fatigue syndrome different?”

View my other answered questions as fibromyalgia expert
http://sharecare.com/user/celeste-Cooper

Resources:

Affaitati G, Costantini R, Fabrizio A, Lapenna D, Tafuri E, Giamberardino MA.Effects of treatment of peripheral pain generators in fibromyalgia patients. Eur J Pain. 2011 Jan;15(1):61-9.

Basford JR, An KN. New techniques for the quantification of fibromyalgia and myofascial pain. Curr Pain Headache Rep. 2009 Oct;13(5):376-8.

Bazzichi L, Rossi A, Massimetti G, Giannaccini G, Giuliano T, De Feo F, Ciapparelli A, Dell'Osso L, Bombardieri S.Cytokine patterns in fibromyalgia and their correlation with clinical manifestations. Clin Exp Rheumatol. 2007 Mar-Apr;25(2):225-30.

Burgmer M, Gaubitz M, Konrad C, Wrenger M, Hilgart S, Heuft G, Pfleiderer B.Decreased gray matter volumes in the cingulo-frontal cortex and the amygdala in patients with fibromyalgia. Psychosom Med. 2009 Jun;71(5):566-73. Epub 2009 May 4.

Cakit BD, Taskin S, Nacir B, Unlu I, Genc H, Erdem HR. Comorbidity of fibromyalgia and cervical myofascial pain syndrome. Clin Rheumatol. 2010 Apr;29(4):405-11.

Carvalho LS, Correa H, Silva GC, Campos FS, Baião FR, Ribeiro LS, Faria AM, d'Avila Reis D. May genetic factors in fibromyalgia help to identify patients with differentially altered frequencies of immune cells? Clin Exp Immunol. 2008 Dec;154(3):346-52.

C. Z. Hong and D. G. Simons, “Pathophysiologic and electrophysiologic mechanisms of myofascial trigger points,” Archives of Physical Medicine and Rehabilitation 79, no. 7 (1998): 863–72.

Hong-You Ge, Hongling Nie, Pascal Madeleine, Bente Danneskiold-Samsoe, Thoms Graven-Nielsen, Lars Arendt-Nielsen. Contribution of the local and referred pain from active myofascial trigger points in fibromyalgia syndrome. 2009. Pain.147; 233-240

Hubbard JE. Myofascial trigger points. What physicians should know about these neurological imitators. Minn Med. 2010 May;93(5):42-5.

HY Ge , Y Wang, B. Danneskiold-Samsøe , et. Al., “The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points.” Pain. 2009 Nov 13.

Irwin M, McClintick J, Costlow C, Fortner M, White J, Gillin JC.
Partial night sleep deprivation reduces natural killer and cellular immune responses in humans. FASEB J. 1996 Apr;10(5):643-53.

Lekander M, Fredrikson M, Wik G.Neuroimmune relations in patients with fibromyalgia: a positron emission tomography study. Neurosci Lett. 2000 Mar 24;282(3):193-6.

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC.
Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print]

Lombardi VC, Hagen KS, Hunter KW, Diamond JW, Smith-Gagen J, Yang W, Mikovits JA. Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature. In Vivo. 2011 May-Jun;25(3):307-14.PMID:21576403

D. M. Niddam, R. C. Chan, S. H. Lee, T. C. Yeh, and J. C. Hsieh, “Central representation of hyperalgesia from myofascial trigger point,” NeuroImage 39 (2008): 1299–1306.

D. Racciatti, J. Vecchiet, A. Ceccomanncini, F. Ricci, E. Pizzigallo, “Chronic fatigue syndrome following toxic exposure,” Science of the Total Environment, Italy 270, no. 1–3 (2001): 27–31.

Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, Adkins NJ, Camp DG, Holland BK, Bergquist J, Coyle PK, Smith RD, Fallon BA, Natelson BH. (2011) Distinct cerebrospinal fluid proteomes differentiate post-treatment Lyme disease from chronic fatigue syndrome. PLoS ONE 6(2): e17287. doi:10.1371/journal.pone.0017287

Sikdar, J.P. Shah, E. Gilliams et al. 2008. “Assessment of myofascial trigger points (MTrPs): A new application of ultrasound imaging and vibration soloelastography.” Arch Phys Med Rehab 89(11): 2041-2226.

Smits B, van den Heuvel L, Knoop H, Küsters B, Janssen A, Borm G, Bleijenberg G, Rodenburg R, van Engelen B.Mitochondrial enzymes discriminate between mitochondrial disorders and chronic fatigue syndrome. Mitochondrion. 2011 Sep;11(5):735-8. Epub 2011 Jun 2.

Woynillowicz Kemp, Anne-Marie B.A., Dip.T., M. Ed. “Highlights of Dr. Daniel Person’s presentation to medical practitioners. Myalgic encephalomyelitis/Chronic Fatigue Syndrome” – The Research Frontier. Calgary: April 29, 2011.

Blood tests for diagnosing FM might be more than a vision

2011-08-22T07:37:00.000-07:00

Currently there are no routine blood tests to diagnose fibromyalgia. However, studies are showing promise. Genetic markers have been found, and though still in the research stage, I suspect we will have a blood test for biological markers before long.

As reported in Fibromyalgia Network News, a new study by Dr. Alan Light (Light, et al. 2011) at the University of Utah, shows FM patients have an increased number of certain sensory receptors and three biomarkers are elevated in the FM patient compared to otherwise healthy study participants and those participants with MS and depression. This is a very important finding specific to FM.

Several comorbid conditions to fibromyalgia (meaning they occur more frequent in FM) do have blood or other tests, such as, hypothyroidism, interstitial cystitis and other bladder problems, gastrointestinal dysfunction, and Raynaud’s. Many Lupus, rheumatoid arthritis, and sjögren’s patients also have FM, and metabolic disorders seem to have a connection to the development of secondary fibromyalgia. There are blood tests that should be done when FM is suspected to make sure these other conditions are not present. They are all treated specifically and the medications used to treat the centralization of FM will not treat these other conditions successfully.

It is important to support the research if you are able. The American Fibromyalgia Syndrome Association, AFSA, has contributed to some very important studies that have helped us understand biomarkers and the presence of myofascial trigger points in FM.

www.afsa.org

Harmony and Hope, Celeste

This blog is based on my original answer as fibromyalgia expert at ShareCare, “How are blood tests used to treat fibromyalgia?” View my other answered questions as fibromyalgia expert

http://sharecare.com/user/celeste-Cooper

Citation:
Light, AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and
Fibromyalgia Syndrome. J Intern Med [epub ahead of print], May 26, 2011

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press

Qi Gong and Biofeedback, tools for helping our bodies deal with FM & ME/CFS

2011-08-20T09:48:00.001-07:00

The value of correctly executed deep meditative breathing practice, Qi Gong, and biofeedback has been well documented. There is a biological affect of these practices.

Oxygen is needed in the Krebs cycle for cellular metabolism and without oxygen cellular damage will occur. We know from the research that oxidative stress is prevalent in both FM and ME/CFS, and this is something you can do even if you are physically challenged.

We also know that stress affects vital signs such as a rise in blood pressure, heart rate and even temperature. This is particularly important in the FM and ME/CFS patient because our homeostasis is already metabolically challenged and we need to decrease cellular stress for healing. If we work at regulating exterior forces that we can help control, we in affect help our bodies by eliminating one more thing it is trying to deal with. Biofeedback is a great tool for learning what happens to your body when your mind is in overload, and teaches us ways of helping control this.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press are for educational purposes and not meant to replace medical advice.

Harmony and Hope, Celeste

Helping your doctor diagnose fibromyalgia

2011-08-17T07:12:00.000-07:00

Though there will be a change in the diagnostics for FM, the consensus remains, there are common symptoms that have generally lasted for more than three months. Note and evaluate any measures that help or worsen the following and report them to your doctor:

•Widespread pain, check presence of myofascial trigger points (MTrPs).
•Secondary, anxiety and/or depression
•Sleep disturbance, non restorative or difficulty getting to sleep or maintaining sleep, primary or could be an autoimmune disorder, Hashimoto’s
•Morning stiffness, check presence of MTrPs.
•Fatigue
•Bladder difficulties, pelvic floor dysfunction, now being successfully treated w/ intravaginal trigger point injections by a uro-gyenocologist
•Bowel habits altered (IBS, diarrhea, constipation, cramping, bloating, gas, leaky gut syndrome or small intestine bacterial overgrowth).
•Chemical sensitivity
•Chest wall pain, check presence of MTrPs
•Cognitive disturbances, primary or from comorbid hypothyroidism
•Cold intolerance, primary or result of comorbid hypothyroidism or Raynaud’s
•Dizziness, check MTrPs in muscles close to vital organs or vessels, or comorbid nuerally mediated hypotension (NMH) or postural orthostatic tachycardia (POTS)
•Dry eyes and mouth, primary or secondary to a metabolic disturbance or autoimmune such as Sjogrens
•Gynecological disturbances or premenstrual syndrome (PMS), See bladder difficulties.
•Headaches, severe and chronic, including migraine, MTrPs have been related to migraine
•Impaired coordination, could be primary but check presence of MTrPs
•Irritability or mood changes, secondary to chronic pain and primary to centralization in FM
•Jaw pain, most likely secondary to TMJ, bruxism (teeth grinding), which exacerbate MTrPs
•Paresthesias, unexplained numbness, most likely related to MTrPs in muscles close to major nerves
•Photophobia (sensitivity to light)
•Raynaud’s syndrome
•Restless leg syndrome (RLS) and/or periodic limb movement (PLM), has central and peripheral component, it is possible that MTrPs are keeping the brain in wind-up
•Ringing in the ears, could have a myofascial component
•Sensitivity to odors
•Sensitivity to noise
•Skin sensitivities and rashes
•Subjective swelling
•Visual problems, could have a myofascial component or be related to a comorbid condition

There is a checklist at the end of the section, “All about Fibromyalgia,” called Summary Exercise: Fibromyalgia. Our publisher has given permission to copy these helpful sheets found at the end of each section or chapter. Share them with your doctor or other healthcare provider.

Tips for communicating with your healthcare provider at
http://www.thesethree.com/fibromyalgia/communication-tips.php

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press

This question is based on my original answer at ShareCare, “How can I help my doctor diagnose fibromyalgia?”

View my other answered questions as fibromyalgia expert
http://sharecare.com/user/celeste-Cooper

Fibromyalgia and the Workplace

2011-08-11T16:12:00.001-07:00

Telling your boss you have fibromyalgia is a personal choice. If you require specific needs, such as time off for doctors appointments, make special revisions to your work area to accommodate your needs, or apply for FMLA, then you may not have a choice.

Staying productive is important, but if your needs exceed what your employer believes is acceptable, there are certain rules that may protect you and certain rules that may protect your employer.

Chapter Seven, Dealing with the System Systematically, in our book, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection covers the laws and programs devised to provide you with protection and help you remain in the workforce.

This blog is based on my original answer as fibromyalgia expert at ShareCare to the question. Do I need to tell my boss about my fibromyalgia?”
View other answered questions on my profile at
http://sharecare.com/user/celeste-Cooper

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.

In with the New, Out with the Old: Fibromyalgia diagnostics

2011-08-05T08:59:00.000-07:00

Times are changing, but we aren't quite there yet. The preliminary diagnostic criterion intends to do away with the tender point model, which has become the hallmark for diagnosing FM.

Fibromyalgia is a central sensitization problem thought to be brought on by a dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis and other central nervous system (CNS) disruptions. The criterion considers the effects of FM on CNS sensitization, and comorbid conditions; migraine, IBS, irritable bladder, cognitive deficit, RLS, hypothyroidism, Raynaud’s, disordered sleep etc.

However, it does not address the co morbidity of chronic myofascial pain, a peripheral nerve to muscle disease that causes myofascial trigger points (MTrPs). Trigger points are knotted up muscle fibers in a taut (tight) band of muscle. They are EASILY felt unless behind bone or other muscles, or the band of muscle affected is too tight. It is an objective piece of evidence to indicate the presence of chronic myofascial pain (CMP) in FM and research suggests possibly all FM patients have them. This is not new to me, and is why myofascial pain is covered extensively in our book. These MTrPs are peripheral pain generators that bombard the brain with pain messages keeping the central nervous system sensitized. Exercising a muscle riddled with MTrPs, will only make the pain and dysfunction worse, leading both the patient and the physician down a road of misguided confusion.

Hashimoto’s thyroiditis may put the patient at greater risk of developing FM. The proposed criteria considers hypothyroidism as a comorbid condition in FM, however, waxing & waning hormones in Hashimoto’s makes it difficult to detect in routine tests. I have had the honor of discussing this with Dr. I Jon Russell, one of the co-authors of the proposed criteria. I believe it prudent that patients with a normal thyroid panel, but symptoms of thyroid disease, (the ups and downs of thyroid hormones, palpitations one minute, and unable to get out of bed the next), should have thyroid antibodies drawn.

For now the tender point model is being used to diagnose fibromyalgia. See a complete account of the tender point model at http://www.thesethree.com/fibromyalgia/tender-points.php

And symptoms at http://www.thesethree.com/fibromyalgia/fibromyalgia-symptoms.php

As fibromyalgia expert at ShareCare.com, this question is based on my original answer to, “What criteria must I meet to be diagnosed with fibromyalgia?

View other answered questions on my profile at
http://sharecare.com/user/celeste

Bats crowding out your belfry, dizziness in FM and CFS/ME

2011-07-28T06:49:00.000-07:00

This blog is based on my original answer to “How do you treat dizziness in fibromyalgia and CFS/ME?” as fibromyalgia expert at ShareCare.com

View other answered questions on my profile at
http://sharecare.com/user/celeste-Cooper

First, you must find out what is causing your dizziness. Dizziness is a symptoms and can be caused by many conditions, but in FM and CFS/ME the major culprits are hypothyroidism, Nuerally Mediated Hypotension (NMH) or Postural Orthostatic Tachycardia (POTS). The presence of myofascial trigger points, causing chronic myofascial pain, located in muscles next to vital organs and blood vessels can also cause dizziness.

Therefore, you must first identify the cause of your dizziness to know how it is best treated. The treatment for all of the disorders I just suggested is different. Equally important is to rule out other conditions such as hypoglycemia (low blood sugar), insulin resistance, impending stroke, etc. Dizziness can be a symptom of many things.

Report this to your doctor and discuss the possibilities of the presence of these conditions, there are tests that can be done. Once any life threatening cause has been ruled out, be sure to check for myofascial trigger points in the area. They can be easily felt by a trained examiner, and treated. Myofascial Pain is present in most if not all FM patients, and many CFS/ME patients have said they suspect them too.

You can read more about all of this in our book, direct links at www.thesethree.com.

Harmony and Hope, Celeste

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press

How do I manage fibromyalgia on a daily basis?

2011-07-27T08:57:00.000-07:00

This question is based on my original answer as fibromyalgia expert at ShareCare.com. View other answered questions on my profile at
http://sharecare.com/user/celeste

Managing fibromyalgia is multidimensional.

Having helpful tools and knowing what to report to your doctor is important. Having a guide to keep us on track is helpful. Also helpful are having terms to describe your pain, understanding what the doctor needs to know about your health history, and knowing how to communicate with your doctor or healthcare provider. Keeping a medication log, a symptoms inventory sheet, evaluation of treatments and medications, etc. are all important to the patient with FM. (All available in our book).

But, there are other aspects to managing fibromyalgia too, such as learning about what fibromyalgia is, developing communication skills with others, and accepting through journaling. It is also important to learn diversion skills to take your mind away from the pain and fatigue. You can learn to do this on your own, develop new hobbies in-line with your new life, or if you need more help like I did, therapy and biofeedback.

There are many therapies and therapists helpful in managing FM. Our book has a complete list with definitions, the types of therapies and treating physicians, and how to find the right therapy and therapist for you.

Managing FM is a 24/7 job. Explaining it in just a few paragraphs is difficult. I started our book as a way of my personal coping. It started with one entry in my journal, “write a book.” Later I was joined by my then therapist and I believe we have a comprehensive guide to managing FM. You are welcome to see the contents at http://www.thesethree.com/fibromyalgia/fibromyalgia-book-content.php

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press

Can pregnancy cause fibromyalgia?

2011-07-18T07:57:00.000-07:00

This question is based on my original answer as fibromyalgia expert at ShareCare.
View other answered questions on my profile at
http://sharecare.com/user/celeste-Cooper

Most of what I have to say about pregnancy and fibromyalgia is from a personal view and anecdotal one.

I did have very difficult pregnancies with severe prolonged morning sickness. However, I doubt that pregnancy was the cause of my FM, I suspect the FM was why I had difficult pregnancies, as I had the comorbid conditions then, Raynaud’s, IBS, migraine, frequent UTI’s,migraines since age 16, etc.

I have heard others say they had great difficulty and needed some assistance after the birth, because lifting caused great pain. I believe that since we now know myofascial trigger points play a role in peripheral mediated pain in FM, that it is important for you to identify any now and treat them.

I had difficulty with my left hip going out with pregnancy, and I suspect it was related to trigger points in the area that were aggravated by the weight of the baby. Knowing these things might help you avoid some of these experiences.

So my answer is we suspect that physical or emotional trauma is a trigger to FM, and pregnancy definitely puts a strain on the physical. It could be a trigger, though not a cause, men have FM too.

Here are two links you might find helpful, one from a scientific aspect, the other from a social one.

http://www.ncbi.nlm.nih.gov/pubmed/21284491
http://fibromyagiablog.blogspot.com/

As always, Harmony and Hope, Celeste

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press

Are there alternative treatments for fibromyalgia?

2011-07-14T08:07:00.000-07:00

This question is based on my original answer as fibromyalgia expert at ShareCare.

View other answered questions on my profile at

http://www.sharecare.com/user/celeste-cooper

Research suggests that many, most, possibly all FM patients also have chronic myofascial pain from myofascial trigger points.

Trigger points are knotted up muscle fibers in a taut (tight) band of muscle. They are EASILY felt unless behind bone or other muscles, or the band of muscle affected is too tight. They shorten the affected muscle and cause dysfunction and refer pain and other symptoms, such as nerve pain if next to a nerve, in a specific pattern that is consistent among all patients. This is not new to me, evidence has shown for a while that many patients with FM also have MTrPs and is why myofascial pain is included in our book, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN and Jeff Miller, PhD. These MTrPs are peripheral pain generators that lend to central nervous system sensitization keeping the FM brain in wind-up.

Treatments for myofascial trigger points include some traditional therapies and alternative treatments:

•Trigger point injection
•Trigger point pressure therapy
•Self Treatment of trigger points (The value of the theracane and tennis balls)
•Active Release Therapy (preformed by some physical therapists and chiropractors)
•Trigger point massage therapy (See the National Association of Myofascial Trigger Point therapists, http://myofascialtherapy.org
•Massage therapy by someone specifically trained in treatment of myofascial trigger points
•Botox injections is being used for the treatment of MTrPs and those that cause migraine. More studies are indicated for treating chronic myofascial pain (CMP/MPS). Due to the need to locate and treat the primary trigger point, not just the active TrP, may make this a less successful option. Because of the many TrPs involved in CMP with FM, it would require toxic doses to treat appropriately. And, FM patient have many sensitivities.

Chapter four, of , Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection, “ My Body is Matter and it Matters,” covers understanding and treating chronic pain, trigger point therapies, body work, different therapies, how to find the right therapist, implications of diet, and the do’s and don’ts of exercise.

Harmony and Hope, Celeste

Available at Inner Traditions Bear and Company, publisher, and all major outlets. http://store.innertraditions.com/Product.jmdx;jsessionid=84DFDF90E93A65CE4B1D02D54D979C9E?action=displayDetail&id=3723&searchString=978-1-59477-323-5

Does someone with fibromyalgia need more exercise?

2011-07-06T06:15:00.000-07:00

This question is based on my original answer as fibromyalgia expert at ShareCare.

View other answered questions on my profile at
http://sharecare.com/user/celeste-Cooper
More exercise is not the answser to managing fibromyalgia when compared to the population at large. It is the type and amount of exercise that is important.

The motto is always, start low and go slow. Generally, therapists that do not truly understand FM will ask you to do more than you should. When you exercise a muscle with myofascial trigger points present (see http://www.thesethree.com/cmp/myofascial-trigger-point.php ) it will cause rebound of the trigger point (TrP). This causes further shortening and dysfunction of the muscle, increased pain, and activation of latent trigger points which will then cause pain which may be well away from the primary TrP. These referral patterns are consistent among all patients.

Many, most, and possibly all FM patients have chronic myofascial pain from myofascial trigger points. Treatment is necessary for exercise to be successful. Once they are treated, gentle stretching and aerobic exercise is imperative to help prevent the reoccurrence, and prevent increased centralization of pain. Unfortunately in FM, the triggers for development of TrPs are different from someone with a traumatic injury. In FM it may only take a chill to activate myofascial trigger points.

If exercising causes more pain, you are less likely to stick with it.

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press

Available at Inner Traditions Bear and Company, publisher, and all major outlets. http://store.innertraditions.com/Product.jmdx;jsessionid=84DFDF90E93A65CE4B1D02D54D979C9E?action=displayDetail&id=3723&searchString=978-1-59477-323-5

Can fibromyalgia or CFS/ME cause depression?

2011-07-01T06:28:00.000-07:00

This question is based on my original answer as fibromyalgia expert at ShareCare.

View other answered questions on my profile at
http://sharecare.com/user/celeste-cooper

Depression can result from the losses associated with having FM and/or CFS/ME; it is not a psychological disorder, but feeling blue and even possibly isolated are a common. We are grieving a loss, not only of our previous functioning, but personal relationships, as well.

Having chronic daily pain and fatigue and the other conditions that accompany FM and CFS/ME are perpetuators to depression.

Acceptance is the first step to managing any chronic illness, but can be difficult. If you are not getting the support you need see a counselor that is experienced in helping people with chronic pain. My co-author started out as my therapist.
It is important to see a counselor that is experienced in helping people with chronic pain. My co-author started out as my therapist.
The right therapist is:

• Highly personal, a connection both nurturing and challenging.
• Highly empathic and not limited by your current perceptions.
• One that uses various therapeutic approaches
• Actively engaged with your therapy.
• One you feel connected to, as well as challenged.
• Never takes advantage of a client, financially, emotionally, or sexually

Other sections of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection discuss various therapeutic approaches, such as visualization, biofeedback, cognitive behavioral therapy, hypnosis, and affirmations.

Harmony and Hope, Celeste

How does fibromyalgia affect my musculoskeletal system?

2011-06-29T07:12:00.000-07:00

This was such a good question asked of me as Share Care fibromyalgia expert, http://www.sharecare.com/user/celeste-cooperI just had to blog here for my fellow bloggers and followers.

Times are changing, but we aren't quite there yet. The preliminary diagnostic criterion intends to do away with the tender point model, which has become the hallmark for diagnosing FM.

Fibromyalgia is a central sensitization problem thought to be brought on by a dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis and other central nervous system (CNS) disruptions. The criteria considers the effects CNS sensitization, and comorbid conditions, migraine, IBS, irritable bladder, cognitive deficit, RLS, disordered sleep etc.

However, it does not address the co morbidity of chronic myofascial pain, a peripheral nerve to muscle disease that causes myofascial trigger points (MTrPs). Trigger points are knotted up muscle fibers in a taut (tight) band of muscle. They are EASILY felt unless behind bone or other muscles, or the band of muscle affected is too tight. It is an objective piece of evidence to indicate the presence of FM when other comorbid conditions are present, research suggests possibly all FM patients have them. This is not new to me, but many patients with FM and is why myofascial pain is included in our book, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN and Jeff Miller, PhD. These MTrPs are peripheral pain generators that lend to sensitization, and keep the FM brain in wind-up.

M = Myofascial
TrP = Trigger point, synonymous with
MTrP = Myofascial trigger point
FM = Fibromyalgia
CMP = Chronic myofascial pain

Doctors that diagnose FM need comprehensive, non-confusing guidelines to diagnose & provide helpful treatments. Exercising a muscle riddled with MTrPs, will only make the pain and dysfunction worse, leading both the patient and the physician down a road of misguided conception.

A similar article, Letter to the Editor, from me will be published in the July issue of the Journal of the American Academy of Pain Management.

“Initially we struggle to accept, backsliding from time to time, but we maintain forward momentum, coping, defining and defending our new life.”

Continue to Share, because I know you Care.
Fibromyalgia Expert http://www.sharecare.com/user/celeste-cooper

All blogs and posts are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (co-author, Jeff Miller, PhD).

Resources:

Basford JR, An KN. New techniques for the quantification of fibromyalgia and myofascial pain. Curr Pain Headache Rep. 2009 Oct;13(5):376-8. Mayo Clinic, SW, Rochester, MN 55905

Cakit BD, Taskin S, Nacir B, Unlu I, Genc H, Erdem HR. Comorbidity of fibromyalgia and cervical myofascial pain syndrome.Clin Rheumatol. 2010 Apr;29(4):405-11.

Ge HY.Prevalence of myofascial trigger points in fibromyalgia: the overlap of two common problems.Curr Pain Headache Rep. 2010 Oct;14(5):339-45.

Ge HY, Nie H, Madeleine P, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen
L. Contribution of the local and referred pain from active myofascial trigger points in fibromyalgia syndrome. Pain. 2009 Dec 15;147(1-3):233-40. Epub 2009 Oct 9.

Ge HY, Y Wang, B. Danneskiold-Samsøe , et. Al., “The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points.” Pain. 2009 Nov 13.

Giamberardino MA, Affaitati G, Fabrizio A Costantini R. Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia. Curr Pain Headache Rep. 2011, May [Epub ahead of print].

C. Z. Hong, “New Trends in myofascial pain syndrome,” Zhonghua Yi Xue Za Zhi (Taipei) 65, no. 11 (2002): 501–12.

C. Z. Hong and D. G. Simons, “Pathophysiologic and electrophysiologic mechanisms of myofascial trigger points,” Archives of Physical Medicine and Rehabilitation 79, no. 7 (1998): 863–72.

T.S. Kuan, Y.L. Hsieh, S.M. Chen, J.T. Chen, W.C. Yen, C.Z. Hong. “Re: The myofascial trigger point region: correlation between the degree of irritability and the prevalence of endplate noise.” Am J Phys Med Rehabil. 2007 Dec;86(12):1033-4; author reply 1034.S.

D. M. Niddam, R. C. Chan, S. H. Lee, T. C. Yeh, and J. C. Hsieh, “Central representation of hyperalgesia from myofascial trigger point,” NeuroImage 39 (2008): 1299–1306.

Sikdar, J.P. Shah, E. Gilliams et al. 2008. “Assessment of myofascial trigger points (MTrPs): A new application of ultrasound imaging and vibration soloelastography.” Arch Phys Med Rehab 89(11): 2041-2226.

D. G. Simons and S. Mense, “Diagnosis and therapy of myofascial trigger points,” Schmerz 17, no. 6 (2003): 419–24.

D.G. Simons, J.Travell, and L. S. Simons, Myofascial Pain and Dysfunction: The Trigger Point Manual, 2nd ed. (Baltimore: Williams and Wilkins, 1999.)

Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome: A
Survival Manual, 44.

We’re Hunting Wabbits: Labels, Research and Doctors

2011-06-23T07:12:00.000-07:00

This is a blog I resurrected from the archives because I felt it needed a face lift.

Questions from one of my FM/CFID/CMP friends.“I am on a hunt for the right diagnosis.”

My friend has genuine and valid concerns for understanding why the labels/names have changed over the years and what it really means, why the doctors that treat us seem to have less information than we do, and how to sort through the cross over symptoms of FM, CFID, now known as CFS/ME, and CMP.

My response:Ah, yes. It is the research, and we are moving in the right direction. Newer research shows that possibly all people with fibro also have chronic myofascial pain (CMP) from trigger points (TrPs). CMP is also known as MPS, (myofascial pain syndrome). Why do Devin Starlanyl and I switch terms? MPS suggests a syndrome and we know now that TrPs are caused by excessive release of acetylcholine (a chemical messenger between the brain and the peripheral nervous system) at the nerve to muscle junction, moving it out of the syndrome classification and into a disease classification. What we don’t know about chronic myofascial pain (CMP) from myofascial trigger points is why in some people TrPs keep recurring, when in the patient with acute injury TrPs can be treated and they remain gone unless a re-injury occurs. I hypothesis that this could be because of poor cellular healing in FM, and the excessive release of pro-inflammatory cytokins in the absence of inflammation and cellular injury, which in turn creates a hypoxic state (not enough cellular oxygen), and creates an ion channelopathy, and the domino effect begins, and repeats itself over and over again. This is where CMP comes in. It is believed to be and research is beginning to support that people with FM also have chronic myofascial trigger points, yielding chronic myofascial pain. I speak to this frequently, and a great deal of research into this went into the book, which was published in 2010, and the research continues to bear fruit in this direction.

Trigger Point (TrP) or Myofascial Trigger Point(MTrP): A hypersensitive bundle of muscle fiber in a taut band of muscle that causes dysfunction of the muscle involved, pain, and a referral pattern that is consistent among all patients for that specific trigger point. Anywhere there is muscle, a trigger point can occur.

Why is research yielding this? We know more now about CMP than we did when the FM model erected (a tool for selecting FM patients in some of the first studies, it was not meant to be a diagnostic tool, but evolved into one). I kept wondering why all my pain docs thought FM was part of the TrP component, when the tender point model has never suggested the presence of myofascial trigger points. Could it be that they were there all along but we didn’t take the time or know how to assess or feel for the knotted up muscle fibers? Possibly, the taut band of muscle was too tight in these participants to feel the trigger point (TrP). I suspect, that those with FM diagnosis without TrPs (if that turns out to be true, replication studies are needed) may have been misdiagnosed, OR there is a subset of FM patients that has both FM and CMP. With better participant screening we will be seeing better study results. We do know that people can and do have myofascial trigger points but do not have FM.

In FM/CMP complex it is the dysfunctional HPA axis that (central sensitization) that bombards the periphery (nerve to muscle) with the wrong messages, or possibly the message for pain relief from the trigger point (in response to the excessive release of the neurotransmitter chemical acetylcholine) never reaching the brain.

In research, things take time and funding is needed. Despite all of the recent controversy, I still suspect that XMRV related viruses will be in a subset of CFS/ME, (chronic fatigue syndrome/myalgic encephalomyelitis) patients like neutrally mediated hypotension (NMH) and postural orthostatic tachycardia (POTS).

There are many cross over symptoms between FM and CFS/ME. You should be able to sift through and determine which are attributable to you. If you are having difficulty because it seems you have them all, it is possible you have all three, FM, CFS/ME, and CMP, as I do. Research may also yield that there is more than a casual connection to FM and ME/CFS and other neuroendocrineimmune (NEI) disorders. Though not published the WPI did find XMRV in their samples of FM patients. As we know it now though FM and CFS/ME are similar they are different, and the differences in the science are discussed in the book.

The WPI study and other studies suggesting a biological marker for CFS/ME, have not only stimulated the research, the term CFS is no more. Scientists and the CFSAC (an action committee on CFS/ME that reports directly to the Secretary of Health in the administrative branch of the US government), now agree there is a biological cause and the need for the name change. For those of us who have dealt with this and screamed out for a name change this inspires hope.

See my blog Hope for ME/CFS a Possible Biological Marker http://fmcfstriggerpoints.blogspot.com/2011/02/hope-for-mecfs-possible-biological.html

Symptomatology and quality of life.

How are your symptoms affecting your life? And, have you found a doctor that listens to and takes your symptoms seriously? In their defense, this is new science. Some filters down to their individual specialty journals, and not. I doubt many subscribe to Science, as this is for scientists mostly. Docs are clinically minded. A GOOD doctor wants to learn, but all are intimidated by patients and mention of the internet. It is in the way you approach them. If your doc isn’t willing to be part of your care (it should be a trusting collaborative relationship), try to find a new one. Ask, why do pharmaceuticals have an edge? The answer is they contact doctors and educate them about their new cutting edge product.

Suggest to your doctor, “You are probably already aware of this, but I was not, and wanted to share this article with you.”

I think if we were educating them regularly about FM, CFID and CMP they would know more about it. That is why I wrotea letter to the editor of The American Academy of Pain Management, which will be published in July issue. Don't expect your doctor to sort through it all as we are all still learning. Have patience if he/she seems interested in learning. If not, GET A NEW DOCTOR!

Things are changing. This is an exciting time for us. Push and support research.
“Bestowed on me is strength from those who exemplify the possibilities of hope, not only believing in the right thing, but putting a megaphone to their voice and action behind it” Harmony and Hope,  Celeste

Share Care Expert http://sharecare.com/user/celeste-cooper
FB http://www.facebook.com/#!/pages/Integrative-Therapies-for-Fibromyalgia/345295878606
Website http://TheseThree.comTwitter http://twitter.com/#!/FibroCFSWarrior
Author: Integrative Therpies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-author Jeff Miller, PhD
Available at book stores with direct links at: Sharecare, this blog and my website

Resources

M. Calis, C. Gokce, F. Ates, S. Ulker, H. B. Izgi, H. Demir, M. Kirnap, S.Sofuoglu, A. C. Durak, A. Tutus, and F. Kelestimur, “Investigation of the hypothalamo-pituitary-adrenal axis (HPA) by 1 microg ACTH test and metyrapone test in patients with primary fibromyalgia syndrome,” Journal of EndocrinologyInvestment 27, no. 1 (2004): 42–46.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points. J Pain. 2009 Nov 13. [Epub ahead of print]

R. Gerwin, “Trigger points: a comprehensive hypothesis of trigger point formation,” Journal of Musculoskeletal Pain 15, no. 13 (2007): 12.

Green PG, Alvarez P, Gear RW, Mendoza D, Levine JD. Further Validation of a Model of Fibromyalgia Syndrome in the Rat. J Pain. 2011 Apr 8. [Epub ahead of print]

C. Z. Hong and D. G. Simons, “Pathophysiologic and electrophysiologic mechanisms of myofascial trigger points,” Archives of Physical Medicine and Rehabilitation 79, no. 7 (1998): 863–72.

Kim SK, Kim KS, Lee YS, Park SH, Choe JY. Arterial stiffness and proinflammatory cytokines in fibromyalgia syndrome. Clin Exp Rheumatol. 2010 Nov-Dec;28(6 Suppl 63):S71-7. Epub 2010 Dec 22.

Lombardi VC, Ruscetti FW, Das Gupta J, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science. 2009 Oct 23;326(5952):585-9. Epub 2009 Oct 8.

J. L. Newton, O. Okonkwo, K. Sutcliffe, A. Seth, J. Shin, and D. E. Jones, “Symptoms
of autonomic dysfunction in chronic fatigue syndrome,” Q JM 100, no. 8
(2007): 519–26.

S. Pay, M. Calguneri, Z. Caliskaner, A. Dinc, S. Apras, I. Ertenli, S. Kiraz, and V. Cobankara, “Evaluation of vascular injury with proinflammatory cytokines, thrombomodulin and fibronectin in patients with primary fibromyalgia,” Nagoya Journal of Medical Science 63, no. 3–4 (2000): 115–22.

Reyes Del Paso GA, Garrido S, Pulgar A, Martín-Vázquez M, Duschek S. Aberrances in autonomic cardiovascular regulation in fibromyalgia syndrome and their relevance for clinical pain reports. Psychosom Med. 2010 Jun;72(5):462-70. Epub 2010 May 13.

P. C. Rowe, “Neurally Mediated Hypotension and CFS.” 1998 Clinical and Scientific
Meeting, www.ahmf.org/98rowe.html (accessed August 2003).

Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, et al. (2011) Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome. PLoS ONE 6(2): e17287. doi:10.1371/journal.pone.0017287

Silverman MN, Heim CM, Nater UM, Marques AH, Sternberg EM. Neuroendocrine and immune contributors to fatigue. PM R. 2010 May;2(5):338-46.

About XMRV – Whittemore-Peterson Institute http://www.wpinstitute.org/xmrv/xmrv_qa.html

The Cat's Out of the Bag-ShareCare Expert

2011-06-22T09:58:00.000-07:00

I have accepted the invitation to be a fibromyalgia expert at Sharecare.com a new online health and wellness interactive social QA platform created by Dr. Mehmet Oz, Jeff Arnold, Harpo Studios (Oprah) and Discovery Communications.

We answer your questions, such as:

“What are the physical effects of fibromyalgia?”
"Do sleep disorders cause fibromyalgia?"
"Is fibromaylgia curable?"
"What factors make fibromyalgia worse?"
"What is fibro fog?"

And any question you want to ask. In all my years of teaching I learned that when one person has a question someone else has the same one. Be the first to raise your hand.

Other experts include, but are not limited to:

•Renowned physicians, nurses, and health authors from around the country
•Top wellness, fitness, and wellbeing experts (including Dr. Michael Roizen, Bob
Greene, Deepak Chopra, Dr. Dean Ornish, Kelly Travers and many more)
•Leading health organizations including American Cancer Society, American Heart
Association, AARP, American Red Cross and American Diabetes Association.
•Nationally recognized hospitals including Johns Hopkins Medicine, New York
Presbyterian, Cleveland Clinic and The Mt. Sinai Medical Center

Come visit me at http://sharecare.com/user/celeste-cooper

Voting on Vivant - Seizing Opportunity

2011-06-20T08:02:00.000-07:00

Vivant says:

We're giving away $1,250,000 to charities you choose where the money goes!

It’s easy and please vote everyday!

JUNE 14 - AUGUST 27

• Like Vivint on FB

at this link:
http://www.facebook.com/#!/VivintHome

• Then just go to this link
http://www.vivint.com/givesbackproject

• Push on the FB sign in logo in the upper R corner

• On next pg, scroll down and choose your favorite charity

At this point WPI has a good chance. They need the revenue so they can continue their research on neuroendocrineimmune diseases.

• Click on the charity you choose

• On next page scroll down and push the vote button.

You have to option of posting your vote on your profile page. Choosing the option puts a megaphone to your voice

“May our spirit fill us with understanding of victory and defeat, the gift of collaboration, the wisdom to choose the right path, and opportunities to inspire hope.”

This is that opportunity

Harmony and Hope, Celeste

The Untold Story of your Thyroid, FM and CFS/ME

2011-06-18T08:50:00.000-07:00

Why is it important to understand how these conditions can relate to those of us with fibromyalgia (FM) and/or chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)? The answer is, research is consistently pointing to an association of hypometabolism, hypothyroidism, Hashimoto's, and thyroid resistance, particularly in fibromyalgia, but also ME/CFS. This research has been ongoing for at least a decade now, and it is important that we pay attention to what the results are showing. The participants in these studies are representative of us and what we go through every day.

Following are some brief overviews and resources for learning more.

HYPOTHYROIDISM ©

The thyroid gland is a butterfly-shaped organ located in the front of the neck, just over the windpipe. It produces iodine-containing hormones, such as thyroxin. Thyroxin regulates the rate at which body cells use energy and produce heat. When these hormones are low, a person is said to have hypothyroidism.

There are several types of hypothyroidism, (discussed here) but the symptoms are generally the same; physical and mental sluggishness, fatigue, dry skin, weight gain, hair loss, cold sensitivity, muscle cramps, constipation, irritability, and in more serious cases, enlargement of the tongue and/or thickening of the skin.
End excerpt (Cooper & Miller, pg 93-94).

According the the National Institute of Health at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001393
The most common cause of hypothyroidism is inflammation of the thyroid gland, which damages the gland's cells. Autoimmune or Hashimoto's thyroiditis (insert, discussed later). Some women develop hypothyroidism after pregnancy (often referred to as "postpartum thyroiditis").

Other common causes of hypothyroidism include:
•Congenital (birth) defects
•Radiation treatments to the neck to treat different cancers, which may also damage the thyroid gland
•Radioactive iodine used to treat an overactive thyroid (hyperthyroidism)
•Surgical removal of part or all of the thyroid gland, done to treat other thyroid problems
•Viral thyroiditis, which may cause hyperthyroidism and is often followed by temporary or permanent hypothyroidism

Certain drugs can cause hypothyroidism, including:
•Amiodarone
•Drugs used for hyperthyroidism (overactive thyroid), such as propylthiouracil (PTU) and methimazole
•Lithium
•Radiation to the brain
•Sheehan syndrome, a condition that may occur in a woman who bleeds severely during pregnancy or childbirth and causes destruction of the pituitary gland

Risk factors include:
•Age over 50 years
•Being female

More recent research, http://www.ncbi.nlm.nih.gov/pubmed/21085966 suggests that Hashimoto's may be a risk factor for fibromyalgia. I am in hopes that the NIH, will be able update their information as the science evolves.

A great book with a holistic approach on hypothyroidism or Hashimoto’s is Living Well With Hypothyroidism: What your Doctor Doesn’t Tell You that you need to Know by Mary Solomon.

You can find information and patient comments on physicians around the country at her website;

website. www.thyroid-info.com

Dr. Jacob Teitelbaum is one of her physician consultants and author of From Fatigued to Fantastic. He has energy systems that include high vitamin B Complex and other treatments. Find out about him and what he has to say at:

http://www.endfatigue.com/

LAB Values have changed
This is probably one of the best kept secrets of all time, yet a factor that can have a great impact on your quality of life if you have undiagnosed thyroid problems.

The old antiquated thyroid assessment scale of 0.5 to 5.0 for the thyroid stimulating hormone -- TSH was changed by specialists in the field in 2003. All labs and physicians should be assessing the thyroid by:

TSH of 0.3 to 3.0

This means in a normal individual (remember in FM and CFS/ME the HPA Axis is out of kilter) a TSH of <0.3 would indicate hyperthyroidism and a TSH of >3.0 would indicate hypothyroidism. At any rate, either requires further investigation, thyroid scans to actually check the function and ultra sounds to see if there could be a tumor that needs to be removed are indicated, but frequently missed with disastrous results for anyone with thyroid disease, but particularly the FM and ME/CFS patient.

The wretchedness of this story is that it STILL is not recognized in most labs, and doctors are either unaware of the changed parameters or chose to ignore them.

Read “The Tragic and Invisible Epidemic of Thyroid Disease” at Vitality 10
http://www.endfatigue.com/health_articles_t-z/Thyroid-tragic_and_invisible_epidemic_of_thryroid_disease.html

HYPOMETABOLISM–Thyroid Resistance ©

Hypometabolism is not the same as hypothyroidism. In this case the thyroid is working appropriately, but the body isn’t utilizing the thyroid hormones. Like reactive hypoglycemia, thyroid hormone levels are normal but they are resisted in the peripheral tissue; this is thyroid resistance. As suggested in chapter 1 of our book, some FM and CFID (ME/CFS) patients have hypometabolism.

The role of thyroid resistance in the fibromyalgia patient is being investigated, and thyroid autoimmunity has been associated with FM severity (Bazzichi, et al. 2007). It may also contribute to the development of myofascial trigger points (Starlanyl and Copeland, 2001).

Thyroid resistance has also been considered as a metabolic factor in chronic fatigue syndrome, as well as fibromyalgia. (Garrison and Breeding, 2003)

End of excerpt (Cooper and Miller, pg 94-95.)

Dr. John C. Lowe is a fibromyalgia, thyroid, and metabolism researcher. As Director of Research for the Fibromyalgia Research Foundation, he has spearheaded the scientific study of two related topics: the metabolic causes of fibromyalgia, and the relief of fibromyalgia symptoms through the treatment approach he developed and named "metabolic rehabilitation." Read more at:

http://www.drlowe.com/jcl/biojcl.htm

IMHO, I am not sure that treating hypometabolism will END fibromyalgia, or CFS/ME. Though having my own Hashimoto's treated with thyroid hormone has helped with the life altering fatigue, it has not helped my pain, insomnia, migraines, and other centrally mediated co-morbid conditions or the peripheral pain generators from myofascial trigger points. However, I do believe hypothyroidism has a more than casual connection to fibromyalgia. And, it is possible that some diagnosed with chronic fatigue syndrome, may not have a viral connection, but a metabolic one if they have undiagnosed thyroid disease. As in my case, one cannot rely solely on a TSH. The proper tests must be done for a proper diagnosis.

Knowing if you have hypothyroidism or hypometabolism, and treating it will certainly help control this co-existing condition. As we talk about in the book, this is extremely important and gives one a sense of empowerment over fibromyalgia and chronic fatigue syndrome.

You can read about Dr. John Lowe’s theory on hypometabolism in an article written by Mary Shomon at:

http://www.thyroid-info.com/articles/drlowefms.htm

HASHIMOTO'S THYROIDITIS—Autoimmune Thyroiditis ©

Hashimoto’s thyroiditis is a condition known to coexist—although not exclusively—in a certain subgroup of CFID patients. It is a type of autoimmune thyroid disease, meaning the body’s immune system attacks and destroys the thyroid gland. Its characteristics are inflammation of the thyroid gland, fatigue, depression, cold sensitivity, weight gain, muscle weakness, thickening of the skin, constipation, dry or brittle hair, muscle cramps, increased menstrual flow, and goiter. Some patients may not have any symptoms.
End excerpt (Cooper and Miller, pg 95).

As we now know, Hashimoto's has been significantly linked to fibromyalgia, http://www.ncbi.nlm.nih.gov/pubmed/21085966 in the latest Bazzichi, et al study (Nov 2010). This is not the first study and should be receiving the recognition it deserves by those who treat fibromyalgia.

Kristin Thorson, is a patient, advocate and editor of Fibromyalgia Network. http://www.facebook.com/#!/FibroNetwork She also runs the nonprofit organization, http;//afsafund.org which funds important FM research and the board has several well known physicians.

As do all of her articles, the January 2011 edition of Network News article, “Thyroid Malfunction Dragging you Down?: Symptoms, Tests and Treatments" caught my eye.

I suggest you take her article and the studies cited her, and a copy of my blog with you to your doctor if you are having unusual symptoms consistent with those mentioned here. Preface your remarks with, you probably already know this, but I found it quite interesting, and thought I would like to share it with you so we can get to the bottom of my symptoms. Get that TSH, free T4, free T3, TPO and TG. Take them actual journal articles and articles supported by research. If they are not interested, find a new doctor.

“As I walk this path, I understand the privilege of intersections, these interruptions enrich my life.” --Celeste

PS
You can find my letter of gratitude to the authors in my blog, Thyroid Autoimmunity and Fibromyalgia, Letter to the author, (Laura Bazzichi, lead author of studies).

http://fmcfstriggerpoints.blogspot.com/2011/01/thyroid-autoimmunity-and-fibromyalgia.html
I hope you will read it. It is important to recognize people for their unending dedication to helping others.

Resources other than those previously linked:

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010., by Division of Rheumatology, Department of Internal Medicine, University of Pisa, Pisa, Italy.

L. Bazzichi, A. Rossi, T. Giuliano, F. De Feo, C. Giacomelli, A. Consensi, A. Ciapparelli, G. Consoli, L. Dell’osso, and S. Bombardieri, “Association between thyroid autoimmunity and fibromyalgic disease severity,” Clinical Rheumatology 26, no. 12 (2007): 2115–20.

Cooper C and Miller J. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont, 2010.

R. L. Garrison and P. C. Breeding, “A metabolic basis for fibromyalgia and its related disorders: the possible role of resistance to thyroid hormone,” Medical Hypotheses 61, no. 2 (2003): 182–89.

Network News. (2011, January) “Thyroid Malfunction Dragging you Down?: Symptoms, Tests and Treatments.”

Mary Shomon. Living Well with Hypothyroidism: What Your Doctor Doesn't Tell You... That You Need to Know (Collins; 1st edition, March 2000)

Devin. J. Starlanyl and Mary. E. Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual (Oakland, Calif.: New Harbinger Publications, Inc., 2001), 44.

Bespeak or Begrudge: finding and affording the shingles vaccine

2011-06-15T06:06:00.000-07:00

People with fibromyalgia (FM) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)often have impaired or ineffective immune systems. This, along with some medications and treatments, a history of certain types of cancer, and stress and fatigue puts us at a higher risk of developing shingles.

Shingles also known as herpes zoster is a viral infection from varicella-zoster virus that causes painful rash/blisters on the skin following a nerve tract. If you have had chicken pox the virus can lay dormant until it erupts later in life as shingles. Early treatment with an anti-viral drug may decrease the risk of reoccurrence.

See the latest reports and information.

Shingles Vaccine from US Today: Your Life Health.
“Shingles vaccine can protect you but it can be hard to find.”
http://yourlife.usatoday.com/health/medical/story/2011/05/Shingles-vaccine-can-protect-you-but-it-can-be-hard-to-find/47160242/1

More on the vaccine from the CDC, standout comment, if you have had shingles, the vaccine may help prevent recurrence.
http://www.cdc.gov/vaccines/vpd-vac/shingles/vacc-need-know.htm

Post Herpatic Neuropathy (PHN) = The residual effect of shingles, where nerve pain, neuralgia, last long after a shingles outbreak has cleared up. It can last months or a lifetime.

Treatment currently includes: antidepressants, anticonvulsants (gabapentin like drugs), topical lidocaine or capsaicin cream, opioid analgesics and TENS units.

Having had shingles, the US Today article left me with an unanswered question. “Does the vaccine help long term effects that can occur, post herpatic neuropathy?”

According to the FDA, the vaccine, Zostavax, will not help PHN.
http://www.fda.gov/BiologicsBloodVaccines/Vaccines/QuestionsaboutVaccines/UCM070418

An important question was raised after I posted this blog. “Should known immunocompromised patients receive the vaccine?” This is something I think each individual should discuss with their doctor, following is why.

Vaccinating the already immune compromised, from the National Foundation for Infectious Diseases:

“Immunocompromised people are more likely to have serious illness with complications as a result of chickenpox. The best way to prevent infection in such people is by immunizing their susceptible family members and their other close contacts. However, some immunocompromised people are eligible for vaccination.”
http://www.nfid.org/pdf/factsheets/varicellaadult.pdf

Harmony and Hope, Celeste, author

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (co-author, Jeff Miller, PhD).

You can find out more about me, the book, how to order the book, and other helpful information and links at http://TheseThree.com

My critique of “Diagnosing fibromyalgia: Moving away from tender points”

2011-06-08T07:59:00.000-07:00

When I got up this morning, the last thing on my mind was writing an advocacy piece, let alone a blog, however, following my own philosophy of “seize the moment” I found my mind would not let me set it aside.

In an effort to raise awareness of centralization in FM from the peripheral input of pain by myofascial trigger points, the following letter when out to doctors who have been kind enough to communicate with me on this issue from both sides of the fence. A Bcc went out to other advocates to provide opportunities for them to carry this forward.

First and foremost, a huge THANKS to Marla Silverman at PANDORA for bringing this to my attention and for giving me the privilege of commenting.
http://www.pandoranet.info/

Following is my letter, which is pretty much my comment to Marla’s request with a few clarifications. After this letter is the full abstract for “Diagnosing fibromyalgia: Moving away from tender points.”

RE: Diagnosing fibromyalgia: Moving away from tender points
By ATUL KHASNIS, MD, WILLIAM S. WILKE, MD | April 11, 2010
The Journal of Musculoskeletal Medicine. Vol. 27 No. 4

Hello Dr. Gerwin, Dr. Bennett, Dr. Russell and Dr. Whiteside

Marla Silverman, President of the Patient Alliance for NeuroEndocrineimmune Disorders Organization for Research and Advocacy has asked me to comment on the noted article in the Journal of Musculoskeletal Medicine. I thought you all might be interested in what I had to say:

It is refreshing to see continued acknowledgement of the science by noting this [FM] is a diagnosis of inclusion. No doubt the aspects reviewed in 2010 were a precursor to the New Proposed Diagnostic Criteria for Fibromyalgia. The Proposed criteria do look at inclusion versus exclusion by noting the comorbid conditions with FM and the centralization of pain. My beef and the beef of others is that they are not including the assessment of myofascial trigger points. If we know this is the main complaint in FM, and science shows repeatedly that MTrPs are peripheral pain generators to the centralization of FM, why wouldn't we acknowledge their presence so they can be appropriately treated?

Exercising a muscle with active or latent trigger points (TrPs) will lead to further dysfunction and shortening [of muscle] and development of TrPs in compensating muscles unless the TrPs are treated prior to exercise. It is one of those double edged swords.

Exercise, stretching and aerobic (there is believed to be a cellular hypoxia related to TrPs) conditions muscles and helps prevent TrPs. The problem is, with FM, TrPs are not the same as in the average person who sustains an injury. It appears that the injury occurs at a very basic cellular and metabolic level, hence the release of pro-inflammatory cytokines in the absence of injury and no inflammation measured in FM, and the presence of elevated sensory preceptors in FM as indicated in a recent study [“the FM-only group had significantly higher baseline quantities of mRNA for sensory receptors P2X4 and TRPV1 and for the cytokine IL10.” Based on the group’s earlier work in mice, they hypothesize that these markers represent increased signal for muscle metabolites that would lead to widespread increases in muscle pain and secondary hyperalgesia in skin throughout the body. Light, et al., 2011].

Side Note:
This study was collaboratively funded by the American Fibromyalgia Syndrome Association (Associated periodical “Fibromyalgia Network News”)
http://www.afsafund.org/research.htm
CFIDS Association of America,
http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/#comments
And the National Institutes of Health

To me and to others who have studied this extensively, such as Devin Starlanyl, Dr. Gerwin, Dr. Bennett, Dr. Hong, Dr. Ge Hy, etc. this all seems pretty basic, but continues to be overlooked.

The article will help raise awareness to the centralization of FM and that certain conditions are common in FM because of brain defects or defects in the messaging system, but it is a very minor start in educating about the aspects of FM. It does take a multimodal approach, but part of that is myofascial therapy, which again, has been omitted.

I found it strange that the authors commented that opioids have been shown to be of little benefit, when there are other studies that show the contrary, and they say that the SSRIs and SNRIs are indicated, as well as Lyrica and Neurontin like drugs, when the evidence of their success in treatment of FM has been very underwhelming. Of course, the benefit of medications of any of these classes would depend on other co-existing conditions.

My biggest concern, as you know is that MANY with FM have migraine and treat them with triptans, which are contraindicated with the SNRIs or SSRIs or combo drugs such as Cymbalta. This MUST be considered for patient safety.

Patient education is imperative, I certainly agree with that, but so is physician education. Everybody needs to be on the same page. The patient should feel free to roam the internet to educate themselves and not be put down for doing so. We are in an entirely different age than we were even 10 years ago. Many patients and patient advocates have saved lives by being entirely informed.

This was the most important bullet of the entire article.

•We refer the patient for sleep study, if indicated; physical therapy; or aquatic therapy. Most patients can motivate themselves for pool therapy. Refer the patient for sleep medicine if that is indicated by the results of the sleep questionnaire.

These days if the doctor asks for a myofascial assessment, the physical therapist will be specialized in this and be able to report back to the physician on the presence of myofascial trigger points, about dysfunction, range of motion of the muscles involved, etc. When this starts to happen, doctors will set up and take note. Dr. Robert Bennett once told me that in all of his years in clinical treatment of FM, he never had one patient that didn't have myofascial trigger points, and Dr. John Whiteside has told me the same. Of course they know how to assess for them, this is paramount.

There you have it, my take. Hope that helps, and TY for valuing my opinion.

Harmony and Hope, Celeste

Light AR, Bateman L, Jo D, Hughen RW, VanHaitsma TA, White AL, Light KC. Gene expression alterations at baseline following moderate exercise in patients with chronic fatigue syndrome and fibromyalgia syndrome. Journal of Internal Medicine.2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x.

Diagnosing fibromyalgia: Moving away from tender pointsEvaluation now emphasizes “areas of pain” and seeing the “whole patient”
By ATUL KHASNIS, MD WILLIAM S. WILKE, MD | April 8, 2010
Dr Khasnis is a fellow and Dr Wilke is a staff member in the department of rheumatic and immunologic disease at the Cleveland Clinic in Ohio.

ABSTRACT:
Since the American College of Rheumatology definition of fibromyalgia syndrome (FMS) was set in 1990, multiple studies have lent support to relying less heavily on tender points. Patients may indicate “areas of pain,” and the diagnostic process includes other common symptoms. The Symptom Intensity Scale provides an objective measure of pain and fatigue. Recognition of FMS may be aided by the presence of other conditions. FMS should be a diagnosis of inclusion rather than exclusion. Multimodal management of FMS starts with patient education, and exercise is a keystone of treatment. Sleep optimization is an important issue. Depression deserves investigation, recognition, and optimal management. Pain management in patients with FMS often is challenging. A combination of patient education and nonpharmacological and pharmacological measures is key to management. (J Musculoskel Med. 2010;27:155-162)

Full article can be viewed at Fibrotalk Blog, http://www.fibrotalk.com/forum/viewtopic.php?f=29&t=23905

Points That Need More Than Pondering: Defining Myofascial Trigger Points

2011-06-04T05:59:00.000-07:00

What is a Myofascial Trigger Point (MTrP), and why does it matter, especially in fibromyalgia?

Myofascial trigger points can mimic many things and cause pain, dysfunction, and shortening of the muscle affected by this knotted up muscle fiber in a taut band of muscle. Such things as paresthesias (numbness and tingling that can be local or radiate in a specific pattern), burning, and pain can result from a MTrP, which is entrapping a nerve. Circulation/temp changes can occur if a MTrP is located next to a blood vessel, and swelling can develop if the MTrP is located next to a blood or lymph vessel). (Helpful treatments are links following).

The following book excerpts are protected by copyright, you must ask permission from Healing Arts Press to reuse this content.

Common Abbreviations©

MPS: myofascial pain syndrome
CMP: chronic myofascial pain
MTP: myofascial trigger point
TrP: trigger point

Myofascial Trigger Point©
A myofascial trigger point (TrP) is a self-sustaining, irritable area in the muscle that can be felt as a nodule in a taut band. This irritated spot causes the muscle to gradually shorten, interfering with the motion function of the muscle and causing weakness and pain. Trigger points differ from tender points in that generally they refer pain to other parts of the body and can usually be felt with the hand (palpated) unless the muscle is too rigid from intense muscle involvement, or the trigger point is in a deep muscle or under bone. The tender points of FM or myalgias associated with CFID do not restrict motion or cause localized muscle weakness. If they do, the patient should also be evaluated for the presence of CMP. Trigger points in CMP are well defined and often radiating—the pain radiates out to other parts of the body.

Active Trigger Point©
An active TrP is a myofascial trigger point that causes pain at rest. It is always tender, causes shortening of the muscle, weakens the muscle, and causes patient complaints of referred pain on direct compression. An active trigger point can elicit a visible local twitch response when adequately stimulated by compression or needle insertion. It can produce referred motor and autonomic phenomena, generally occurring in the TrP referral zone. An active TrP can also cause the referral zone to become tender.

Secondary Trigger Point©
A secondary TrP is one that develops in a second compensating muscle. A compensating muscle is one that is trying to make up for the malfunction of the muscle affected by primary trigger points. In other words, when a primary trigger point causes muscle dysfunction, the opposing muscles become stressed. These opposing muscles become overloaded because they are attempting to carry the entire load of the muscle work needed to perform a task. When staring at a computer screen your head starts to drift forward after a while, particularly if you spend hours there. You may have primary TrPs in muscles on the front of your neck, which may or may not be making their presence known. As your head starts drifting forward, putting less stress on the primary TrPs because of the slackening, the muscles on the backside of your neck are being stretched and stressed in an effort to keep your face from falling onto your keyboard. The sustained overstretching of these muscles causes secondary trigger points to develop in the muscles on the back of your neck. (This is an important reason to pay attention to posture as an aggravating factor, to be discussed in chapter 4.)

Satellite Trigger Point©
Chronic myofascial pain (CMP) from myofascial trigger points is a peripheral nerve to muscle problem. Acetylcholine (a neurotransmitter, a chemical that carries information from the peripheral nervous system to the central nervous system) has been found in excessive amounts. Fibromyalgia, CFID/ME, migraine, IBS, irritable bladder and several other common co-existing conditions have a strong central nervous system component. When any of these co-exist with chronic myofascial pain (CMP) from myofascial trigger points (TrPs), the peripheral message of painful trigger points to the brain keeps the brain in a hypersensitive state," causing a “wind up” phenomenon at the HPA-axis (dysfunctional in FM and thought to be dysfunction in CFID) is off an running.

End Comments:
Chronic myofascial pain (CMP) from myofascial trigger points is a peripheral nerve to muscle problem. Acetylcholine (a neurotransmitter, a chemical that carries information from the peripheral nervous system to the central nervous system) has been found in excessive amounts where nerve meets muscle. Biopsies show a histological difference in MTrP fiber and even differences between an active and latent MTrP. Because of development of new technology examiners can now easily locate MTrPs for treatment.

Fibromyalgia, CFID/ME, migraine, IBS, irritable bladder and several other common co-existing conditions have a strong central nervous system component. When any of these co-exist with chronic myofascial pain (CMP) from myofascial trigger points (TrPs), the peripheral message of painful trigger points to the brain keeps the brain in a hypersensitive state," causing a “wind up” phenomenon at the HPA-axis (dysfunctional in FM and thought to be dysfunction in CFID) is off an running.

Myofascial trigger points can mimic sciatica, pelvic floor pain, or costochondritis. They can also cause painful intercourse, impotence, vulvodynia, cavitational necrosis, TMJ/TMD, restless leg syndrome, PMS, and much more. They can be one of the main factors in migraine headaches, chronic sinusitis and a host of other conditions. They are NOT to be taken lightly, especially now with abounding and repeated research over more than a decade showing us that they are a main component in the pain of FM.

Myofascial Release http://www.myofascialrelease.com/fascia_massage/public/default.asp

Active Release Therapy (ART) http://www.qfac.com/pain_management/active_release_therapy.html

National Association of Myofascial Trigger Point Therapists http://www.myofascialtherapy.org

Recommended reading for self treatment:
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN and Jeff Miller, PhD. Healing Arts Press: Vermont, 2010. (Forward by Devin Starlanyl, author, researcher, endorsed by Dr. John Whiteside, myofascial and holistic specialist physician, Australia, and Bill Douglas, Best Selling author, teacher, and founder of many stress management programs with global recognition.)

Healing Arts Press (Publisher)
http://store.innertraditions.com/isbn/978-1-59477-323-5 (On Sale)

Amazon
http://www.amazon.com/Integrative-Therapies-Fibromyalgia-Syndrome-Myofascial/dp/1594773238/ref=sr_1_1?ie=UTF8&s=books&qid=1246252159&sr=8-1(available in Kindle)

Barnes and Nobel
http://search.barnesandnoble.com/Integrative-Therapies-for-Fibromyalgia-Chronic-Fatigue-Syndrome-and-Myofascial-Pain/Jeffrey-Miller/e/9781594773235?itm=1&USRI=Integrative%20Therapies%20for%20Fibromyalgia,%20Chronic%20Fatigue%20Syndrome,%20and%20Myofascial%20Pain:%20The%20Mind-Body

The Trigger Point Therapy Workbook, 2nd ed. By Clair Davies, NCTMB with Amber Davies, NCTMB. New Harbinger: Oakland, 2004. (Forward by Dr. David Simons)

http://www.triggerpointbook.com/triggerp.htm

Amazon
http://www.amazon.com/Trigger-Point-Therapy-Workbook-Self-Treatment/dp/1572243759/ref=sr_1_1?ie=UTF8&qid=1307195480&sr=8-1

Barnes and Nobel
http://www.barnesandnoble.com/w/trigger-point-therapy-workbook-2d-clair-davies/1006105335

I hope you found this information helpful.

"Though our bodies are weak our determination is unbreakable, standing tall, standing strong, standing united, committing to a cure."

Celeste http://TheseThree.com
Resources:

Ashkenazi A, Blumenfeld A, Napchan U, Narouze S, Grosberg B, Nett R, DePalma T, Rosenthal B, Tepper S, Lipton RB. Peripheral nerve blocks and trigger point injections in headache management - a systematic review and suggestions for future research. Headache. 2010 Jun;50(6):943-52. Epub 2010 May 7.

Cakit BD, Taskin S, Nacir B, Unlu I, Genc H, Erdem HR.Comorbidity of fibromyalgia and cervical myofascial pain syndrome. Clin Rheumatol. 2010 Apr;29(4):405-11.

Cooper, C and Miller, J. (2010). Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont

Fernández-de-las-Peñas C, Galán-del-Río F, Fernández-Carnero J, Pesquera J,
Arendt-Nielsen L, Svensson P. Bilateral widespread mechanical pain sensitivity in women with myofascial temporomandibular disorder: evidence of impairment in central nociceptive processing. J Pain. 2009 Nov;10(11):1170-8. Epub 2009 Jul 9.

Ge HY.Prevalence of myofascial trigger points in fibromyalgia: the overlap of two common problems.Curr Pain Headache Rep. 2010 Oct;14(5):339-45.

Ge HY, Fernandez-de-Las-Penas C, Yue SW, Myofascial trigger points: spontaneous electrical activity and its consequences for pain induction and propagation. Chin Med. 6(1):13, 2011.

Ge HY, Nie H, Madeleine P, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen
L. Contribution of the local and referred pain from active myofascial trigger points in fibromyalgia syndrome. Pain. 2009 Dec 15;147(1-3):233-40. Epub 2009 Oct 9.

Ge HY, Zhang Y, Boudreau S, Yue SW, Arendt-Nielsen L. Induction of muscle cramps by nociceptive stimulation of latent myofascial trigger points. Exp Brain Res. 2008 Jun;187(4):623-9. Epub 2008 Mar 4.

Giamberardino MA, Affaitati G, Fabrizio A Costantini R. Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia. Curr Pain Headache Rep. [May 5 Epub ahead of print].

Gerwin R. Treatment of Chronic Migraine Headache with nabotulinumtoxinA Curr Pain Headache Rep. 2011 May 6. [Epub ahead of print]

Hubbard JE. Myofascial trigger points. What physicians should know about these neurological imitators. Minn Med. 2010 May;93(5):42-5.

Niddam DM, Chan RC, Lee SH, Yeh TC, Hsieh JC. Central representation of hyperalgesia from myofascial trigger point. Neuroimage. 2008 Feb 1;39(3):1299-306. Epub 2007 Oct 11.

Niddam DM. Brain manifestation and modulation of pain from myofascial trigger points. Curr Pain Headache Rep. 2009 Oct;13(5):370-5.

Partanen JV, Ojala TA, Arokoski JP. Myofascial syndrome and pain: A neurophysiological approach. Pathophysiology. 2010 Feb;17(1):19-28. Epub 2009 Jun 4.

Shah JP, Gilliams EA. Uncovering the biochemical milieu of myofascial trigger points using in vivo microdialysis: an application of muscle pain concepts to myofascial pain syndrome. J Bodyw Mov Ther. 2008 Oct;12(4):371-84. Epub 2008 Aug 13.

Sikdar S, Shah JP, Gilliams E, Gebreab T, Gerber LH. Assessment of myofascial trigger points (MTrPs): a new application of ultrasound imaging and vibration sonoelastography. Conf Proc IEEE Eng Med Biol Soc. 2008;2008:5585-8.

Do No Harm – Medication Safety

2011-05-31T20:20:00.000-07:00

Frequently we ask each other about medications our doctors want us to try. It is a normal reaction to desire the input from our other challenged friends. As a nurse and patient advocate, I have a few words to say about this.

First, no two of us are exactly alike. Though many of us have the same comorbid conditions, IBS, IC, irritable bladder, chronic sinusitis, Raynaud’s, migraine, symptoms compatible with chronic myofascial pain (CMP), hypothyroidism or Hashimoto’s, insomnia, allergy, malaise, SICCA symptoms (dry mucous membranes usually due to an autoimmune process), anxiety and depression, cold intolerance, leaky gut syndrome, small intestine bacterial overgrowth (SIBO), restless leg syndrome, multiple chemical sensitivities, bruxism (teeth grinding), symptoms of autonomic effects, neutrally mediated hypotension (NMH), postural orthostatic hypotension (POTS), jaw pain, chills and night sweats, and many more that cross over between FM, ME/CFS, and CMP, each requires their own different medication or treatment. And, we may have other co-existing conditions to boot.

comorbid = indicating a medical condition existing simultaneously but independently with another condition in a patient. (source Wikipedia)

“Chronic Myofascial Pain (CMP) = a chronic disease causing sensory, motor, and autonomic symptoms that are affected by nerve to muscle chemicals where the nerve endplate meets muscle. It is a chronic disorder in which myofascial trigger points (TrPs) develop in muscles that are overstressed, overused, or injured, and they can be reactivated by a chill or other stressor. Different from isolated occurrences of TrPs in normal individuals; CMP develops when TrPs are apparent in several quadrants of the body and have become chronic.

Myofascial Trigger Point = A myofascial trigger point (TrP) is a self-sustaining, irritable area in the muscle that can be felt as a nodule in a taut band that causes the muscle to gradually shorten, interfering with the muscle function causing weakness and pain.”

[Cooper and Miller, 2010]

Co-existing conditions, conditions or diseases that occur coincidentally with another, but not at any greater rate with FM or ME/CFS, also require medications for treatment that might interfere with or enhance our other meds. Though they are not considered comorbid conditions the can co-exist. These diseases might include Lupus, Lyme’s, Multiple sclerosis (MS), Gulf War Syndrome, chronic yeast, Complex Regional Pain Syndrome (also called Reflex Sympathetic Dystrophy Syndrome), osteoarthritis, high cholesterol (statin drugs), rheumatoid arthritis, degenerative disc disease, hypothyroidism, thyroid resistance, insulin resistance, hypoglycemia, reactive hypoglycemia or any metabolic condition, and many more which are explained and defined in our book.

I believe you will be extremely interested in the links provided at the end of this article, and I hope you will read to the very end and look at each one. They are some of the tools you need to be as safe with your medications, including over-the-counter (OTC) and herbs and supplements.

All of these conditions can be present in FM and ME/CFS, but vary between patients; meaning medications to treat one condition might interact with medications to treat another. The more medications you need to control comorbid and coexisting conditions, the greater the risk for interaction.

Physicians have little time to spend with you before handing you a script or sample and sending you on your way. The insert to your medication, which you may or may not get with your samples, will say certain medications require close monitoring when given together. As an example, many FM, ME/CFS, or CMP patients have migraine as a comorbid condition, yet the SSRI and SNRI antidepressants used in treatment come with warnings regarding the concomitant use with certain drugs to treat migraine. Serious life threatening results can occur and it is doubtful your doctor will be able to monitor you close enough until they get a report on your emergency room visit or hospitalization. Now, if you don’t have comorbid or coexisting conditions, and your only medication is that to treat FM, ME/CFS, or CMP then you are not at a great risk, however, part of having FM or ME/CFS is the relationship of so many other conditions.

Another example is the use of calcium citrate to combat osteopenia (precursor to osteoporosis). If you have hypothyroidism you should not take calcium within 4-6 hours of your thyroid hormone replacement, and most of the statin drugs used to treat high cholesterol tell you not to eat or drink grapefruit, but let’s face it, when samples are given or you are instructed to take something OTC, you don’t get this information. The pharmacist is also overworked and generally not in the mood to do one on one education on your complete medication profile on demand. Though they will give you information on a new medication, you need a complete review of your medication profile when a new med or supplement is added. Take a complete medication list with you. Laws regarding the responsibility of the pharmacist to protect us from medication interactions are in place. You might ask that they review your file and the data base at their disposal then set up a later consultation time, or follow up phone call. This will give them time to give you the attention you need.

Medications such as Lexapro, an SSRI used to treat primary FM, can exacerbate or cause bruxism.

Medications used to treat arthritis conditions can cause a great deal of GI distress, if you have one of the many gastrointestinal conditions that seem to occur with FM, the drug you are using to treat your co-existing condition can make it worse, or could cause a life threatening bleed.

Other medications used to treat conditions related to ME/CFS: Immune globulin may interfere with vaccinations, interferon, antivirals such as acyclovir, and now Ampligen all come with some significant warnings. This doesn’t mean the benefit doesn’t outweigh the risk, only that you need to be aware of what might happen so you can make your own educated choices.

Medications used to improve cognition and improve sleep, come with a host of interactions with other medications. As an example, a drug being used to help with cognition used to treat Alzheimer’s, galantamine, and the drug Methylphenidate to treat ADHD interfere with many of the other medications used to treat our conditions. The classes of medications used to help us sleep, relax muscles, treat headache, allergies, or the many other conditions we endure come with long lists of interactions too.

These are just a few examples, but all of these things have to be weighed on a benefit/risk analysis. The days of your physician being able to help you with that or even discuss the possibility are long gone unless you speak up. We must become proactive in our own healthcare. Know what you are putting into your body, what it is for, and interactions with other medications or other conditions you may have.

I always tell my husband when starting a new medication, and here is why. I was put on a widely used medication to treat primary FM. Disordered sleep and insomnia are part of my everyday life. However, I went 5 days with no sleep. I was agitated, paranoid, delusional, severely depressed, could not walk, put two thoughts together or form a complete sentence. It was my husband that was able to make the connection with the new medication, because I didn’t have enough active brain cells to connect the dots. What happened is called a paradoxical reaction. That class of medications is now on my allergy list. I have also had to visit the ER because of other new medication reactions. We do experience unusual sensitivities; it is part of FM and ME/CFS.

I was an ER nurse for 20 years, so I understand that when physicians see certain medications listed as allergies, a red flag goes up. Well, I am here to tell you that I really don’t care what they think. What is important to me is that you and I live the best life we can live under the circumstances.

Here is a little story for you. I was once forced to give a patient a drug in the class of non steroidal anti-inflammatory, when she had ibuprofen listed as an allergy. Believing what I always told my students, the patient knows more about their body than anybody, if they question you, you question you, I had epinephrine at the bedside. She immediately went into anaphylactic shock and lost consciousness. Following our standing protocol (I didn’t need the doctor’s permission), I gave it. Believe me these things do happen. Throw a fit if need be.

If you have a concern, check it out on sites that are reputable, document your symptoms, print out supporting material and take it to your doctor. Fibromyalgia, ME/CFS and CMP are complicated, your physicians needs to be working for you and with you. Let him/her explain to you why the benefits may outweigh the risks in your case. If he/she cannot do that ask who can and get a referral. If your physician seems disinterested, find a new doctor.

Always make sure your pharmacist or every pharmacist (I understand these days people must shop for the best price) has a complete list of all your medications, including samples and over the counter medications (acetaminophen, widely known as Tylenol, is in many medications and there is a potential for overdose and severe liver damage). Over the counter medications, supplements, and even creams may contain chemicals that can be absorbed and increase blood levels of your medications. An example given to me was a cream with St. John’s Wort, which can alter/elevate serotonin levels. There is a reaction called serotonin syndrome, which is life threatening crisis. So if you take a medication such as an SSRI or combination SSRI/SNRI, you could be at risk. There is a form for medication lists and tracking benefits/non-benefits of all therapies in our book.

Not all drugs should be abruptly discontinued, particularly those in the class of antidepressant or antiseizure, which are approved for use in the U.S. for FM and are being used in ME/CFS. Please consult with your physician and/or pharmacist before discontinuing any of your medications.

Report any drug reaction to your pharmacist and make sure they submit an incident report. You can also report interactions at FDA Med Watch (left column)
http://www.fda.gov/Safety/MedWatch/default.htm

Please Be Safe, take charge of your health care; it could save your life.

Drug Checkers

Good patient information

http://www.drugs.com

Check interactions of specific drugs

http://www.drugs.com/interactions-check.php?drug_list=1989-1281,704-358

Provides extensive information about side effects, drug interactions, FDA recalls and drug alerts

http://Drugwatch.com

Information on Supplements

http://www.arthritistoday.org/treatments/supplement-guide/index.php

Check drugs you are taking for interactions with each other, including over the counter drugs or herbals and vitamins.

http://cpref.goldstandard.com/inter.asp?r=8084

Information on Drugs and Supplements

http://www.ncbi.nlm.nih.gov/pubmedhealth/s/drugs_and_supplements/a/

Reporting drug interactions or adverse effects
FDA Med Watch (left column)

http://www.fda.gov/Safety/MedWatch/default.htm

FM Drugs

http://fmcfsme.com/drug_database.php

http://arthritis.about.com/od/fibromyalgia/a/fibrotreatment_2.htm

http://arthritis.about.com/od/fibromyalgia/a/fibrotreatment_2.htm

http://www.ncbi.nlm.nih.gov/pubmed/20047155 (Article on why Europe will NOT approve the medications that the FDA has approved in the US for treating fibromyalgia)

http://www.benthamscience.com/open/torj/articles/V004/35TORJ.pdf (PDF Pregabalin in Treatment-Refractory Fibromyalgia. My Comment: the efficacy of Pregabalin in treating FM is suspect.)

http://rheumatology.oxfordjournals.org/content/50/3/532.abstract (Comparative efficacy and acceptability of amitriptyline, duloxetine and milnacipran in fibromyalgia syndrome: a systematic review with meta-analysis. My Comment: the efficacy of amitriptyline, duloxetime and milnacipran for treating primary FM are not as promising as we hoped.)

http://www.health.com/health/condition-article/0,,20326413,00.html (Prescription Medications for Fibromyalgia: Lyrica, Cymbalta, Savella, and Off-Label Remedies. My Comment: Success rate for Lyrica, Cymbalta and Savella is disappointing, however, if you happen to be in the small percentage of people that it helps, Woo Hoo! If the results are not worth the risk, then reevaluation is indicated)

CFID drugs

http://www.immunesupport.com/chronic-fatigue-syndrome-medications.htm

http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=treatments-and-drugs (Comment: Unfortunately, there is no magic bullet for CFID (ME/CFS) at this time and treatments are aimed at the underlying conditions.)

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain by Celeste Cooper, RN and Jeff Miller, PhD. Healing Arts Press: Vermont, 2010.

Thursday May 26th Teleconference on Myofascial Trigger Points

2011-05-23T06:09:00.000-07:00

In honor of Fibromyalgia Awareness Month, I have been invited to speak on myofascial pain in fibromyalgia. The agenda will include myofascial trigger points, their involvement in fibromyalgia, symptom referral patterns, why it is important to understand more about these peripheral pain generators specifically in FM, what they are, the different types, perpetuating factors, treatment, and self care.

Title: Teleconference: Celeste Cooper on Myofascial Pain
Date: This Thursday, May 26, 2011
Time: 11:00am Pacific; 2:00pm Eastern; 1:00pm Central; 12:00pm Mountain
This is a Phone + Web Simulcast

To call in dial (503) 290-5016 PIN Code: 783111#

To visit live on the web: http://InstantTeleseminar.com/?eventID=19942302
Sponsor: The Oregon fibromyalgia Support Group
Moderator: Tamara Robinson Staples.

Hope to see you there.

Harmony and Hope, Celeste, author
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome,, and Myofascial Pain (co-author, Jeff Miller, PhD)

RESOURCES for the presentation:

Ashkenazi A, Blumenfeld A, Napchan U, Narouze S, Grosberg B, Nett R, DePalma T, Rosenthal B, Tepper S, Lipton RB. Peripheral nerve blocks and trigger point injections in headache management - a systematic review and suggestions for future research. Headache. 2010 Jun;50(6):943-52. Epub 2010 May 7.

Cakit BD, Taskin S, Nacir B, Unlu I, Genc H, Erdem HR.Comorbidity of fibromyalgia and cervical myofascial pain syndrome. Clin Rheumatol. 2010 Apr;29(4):405-11.

Chen Q, Bensamoun S, Basford JR, Thompson JM, An KN.Identification and quantification of myofascial taut bands with magneticresonance elastography. Arch Phys Med Rehabil. 2007 Dec;88(12):1658-61.

Explore Plastic Surgery - Dr. Barry Eppley
The Importance Of Patient Selection in Migraine Surgery http://exploreplasticsurgery.com/category/migraine-headaches/

Fernández-de-las-Peñas C, Galán-del-Río F, Fernández-Carnero J, Pesquera J,
Arendt-Nielsen L, Svensson P. Bilateral widespread mechanical pain sensitivity in women with myofascial temporomandibular disorder: evidence of impairment in central nociceptive processing. J Pain. 2009 Nov;10(11):1170-8. Epub 2009 Jul 9.

Ge HY.Prevalence of myofascial trigger points in fibromyalgia: the overlap of two
common problems.Curr Pain Headache Rep. 2010 Oct;14(5):339-45.

Ge HY, Arendt-Nielsen L. Latent myofascial trigger points. Curr Pain Headache Rep May 11 [Epub ahead of print]

Ge HY, Fernandez-de-Las-Penas C, Yue SW, Myofascial trigger points: spontaneous electrical activity and its consequences for pain induction and propagation. Chin Med. 6(1):13, 2011.

Ge HY, Nie H, Madeleine P, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen
L. Contribution of the local and referred pain from active myofascial trigger points
in fibromyalgia syndrome. Pain. 2009 Dec 15;147(1-3):233-40. Epub 2009 Oct 9.

Ge HY, Serrao M, Andersen OK, Graven-Nielsen T, Arendt-Nielsen L.Increased H-reflex response induced by intramuscular electrical stimulation of latent myofascial trigger points. Acupunct Med. 2009 Dec;27(4):150-4.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L.
The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

Ge HY, Wang Y, Fernandez-de-Las-Penas C, Graven-Nielsen T, Danneskiold-Samsøe B, Arendt-Nielsen L. Reproduction of overall spontaneous pain pattern by manual stimulation of active myofascial trigger points in fibromyalgia patients. Arthritis Res Ther. 2011. 13(2):R48.

Ge HY, Zhang Y, Boudreau S, Yue SW, Arendt-Nielsen L. Induction of muscle cramps by nociceptive stimulation of latent myofascial trigger points. Exp Brain Res. 2008 Jun;187(4):623-9. Epub 2008 Mar 4.

Giamberardino MA, Affaitati G, Fabrizio A Costantini R. Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia. Curr Pain Headache Rep. [May 5 Epub ahead of print].

Gerwin R. Treatment of Chronic Migraine Headache with nabotulinumtoxinA Curr Pain Headache Rep. 2011 May 6. [Epub ahead of print]

Hubbard JE. Myofascial trigger points. What physicians should know about these neurological imitators. Minn Med. 2010 May;93(5):42-5.

Li LT, Ge HY, Yue SW, Arendt-Nielsen L. Nociceptive and non-nociceptive hypersensitivity at latent myofascial trigger points. Clin J Pain. 2009 Feb;25(2):132-7.

Myburgh C, Lauridsen HH, Hartvigsen J. Standardized manual palpation of myofascial trigger points in relation to neck/shoulder pain; the influence of clinical experience on inter-examiner reproducibility. Man Ther. 2010 Aug 31. [Epub ahead of print]

Niddam DM, Chan RC, Lee SH, Yeh TC, Hsieh JC. Central representation of hyperalgesia from myofascial trigger point. Neuroimage. 2008 Feb 1;39(3):1299-306. Epub 2007 Oct 11.

Niddam DM. Brain manifestation and modulation of pain from myofascial trigger points. Curr Pain Headache Rep. 2009 Oct;13(5):370-5.

Partanen JV, Ojala TA, Arokoski JP. Myofascial syndrome and pain: A neurophysiological approach. Pathophysiology. 2010 Feb;17(1):19-28. Epub 2009 Jun 4.

Shah JP, Danoff JV, Desai MJ, Parikh S, Nakamura LY, Phillips TM, Gerber LH. Biochemicals associated with pain and inflammation are elevated in sites near to and remote from active myofascial trigger points. Arch Phys Med Rehabil. 2008 Jan;89(1):16-23.

Shah JP, Gilliams EA. Uncovering the biochemical milieu of myofascial trigger points using in vivo microdialysis: an application of muscle pain concepts to myofascial pain syndrome. J Bodyw Mov Ther. 2008 Oct;12(4):371-84. Epub 2008 Aug 13.

Sikdar S, Shah JP, Gilliams E, Gebreab T, Gerber LH. Assessment of myofascial trigger points (MTrPs): a new application of ultrasound imaging and vibration sonoelastography. Conf Proc IEEE Eng Med Biol Soc. 2008;2008:5585-8.

Xu YM, Ge HY, Arendt-Nielsen L. Sustained Nociceptive Mechanical Stimulation of Latent Myofascial Trigger Point Induces Central Sensitization in Healthy Subjects Man Ther. 2010 Aug 31. [Epub ahead of print]

Zhang Y, Ge HY, Yue SW, Kimura Y, Arendt-Nielsen L. Attenuated skin blood flow response to nociceptive stimulation of latent myofascial trigger points. Arch Phys Med Rehabil. 2009 Feb;90(2):325-32.

Letter to the President of the United States

2011-04-29T07:30:00.000-07:00

Dear Mr. President,

Did you know that Dr. Janet Travell is the pioneer in understanding myofascial trigger points AND the first female physician in the Whitehouse? Did you know she treated President Kennedy for his personal chronic pain issues?

Fibromyalgia (FM) is a biological disorder. It is a disorder of the central nervous system that is further sensitized by input from the peripheral nervous system. But the proposed diagnostic criteria for fibromyalgia does not include assessment of Hashimoto’s Thyroiditis, restless leg syndrome myofascial trigger points which are knotted up pieces of muscle fiber called trigger points, that keep the brain in perpetual wind-up because of the peripheral pain and dysfunction, including shortening of muscle and neuropathies. We have been inappropriately labeled far too long. Many have been psychologically bruised by the medical community. Touch me. Feel the knots in my muscles, test me for thyroid autoimmune disease, and perform a sleep study on me that shows you I moved my legs 187 times in 4 hours and never reached slow wave progression sleep and then tell me it is all in my head.

I have communicated my concerns as a patient, author and advocate to Mr. Clark, Public Liaison, National Institute of Health, NIAMS division, editor of Arthritis Today, who published “The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity” (see footnote) and the liaison for the American College of Rheumatology.

We need to avail all treatments including complimentary therapies. Pain and muscle dysfunction caused by myofascial trigger points should be treated with appropriate hands on therapy by those trained in the guidelines set forth by Dr. Janet Travell later joined by Dr. David Simons (first physician in outer space).

Can we, the fibromyalgia community count on you to take a stand? Without your support, we can expect another decade of unresolved pain, fatigue and dysfunction. Present research supports all I have said, but we need more, we need to move the science in the right direction until a cause and a cure is found.

Sincerely,
Celeste Cooper, author of
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-authored with Jeff Miller, PhD)
www.TheseThree.com

THE ADVOCACY PACKAGE

2011-04-29T06:25:00.000-07:00

"If the creator had a purpose in equipping us with a neck,
he surely meant us to stick it out."
-Arthur Koestler

How to be an advocate.

For people who suffer chronic disorders, advocating can be therapeutic. It is about using your voice to help others by supporting a common goal.

TEN TOP TIPS

1) Pick a topic you are personally riled up about. For instance, the proposed criteria for diagnosing fibromyalgia or the criteria you want to see used from diagnosing ME/CFS, the lack of insurance reimbursement for therapies considered alternative, a name change, the right to have pain managed reasonably or the politics of getting the “right” research funded.

2) Share, share, share. May our spirit fill us with understanding of victory and defeat, the gift of collaboration, the wisdom to choose the right path, and inspire us to hope.

3) Respect your limits. I set a timer, which keeps the respect for my limits in check.

4) Set achievable goals, avoiding the pitfalls of burnout. Do not set out to change the world, set out to express your personal thoughts, and then change the world. It is the common thoughts of many that make us a community, the stream.

5) Accept your right to be heard. Do not let others intimidate you. Whether it is time, talent or treasure, all are important. A rock pitched into a stream changes its course for eternity, be a rock. It is the common thoughts of many that make us a community, the stream.

6) Accept that you might not always get a reply, but believe that somebody is listening. We never know how far or how wide we are received.

7) Stay organized. There will be days when your brain works in tandem with the keyboard and others when everything is foreign. Important for a fogged brain is to stay on task, decide on key points and make a check list so you can leave and come back.

8) Carry your advocacy into your own healthcare. Let your healthcare providers know what you are doing and if there is anything they might like to contribute. Granted you need the right healthcare provider, if you don’t have one, try to find one.

9) Provide a mechanism for follow up by journaling your advocacy efforts. I fie every advocacy piece I write with the contact information. If I get a response, I copy and paste it into that same word file with the date and time.

10) Remember you are on a team. You are not alone, many choose advocacy as a way of coping with change. Besides the obvious, extend your realm; reach out to co-workers, friends, spiritual groups, or immediate and extended family. Enrich your relationships by sharing the recent research, you might change the way others see us.

All it takes is the will to be an advocate. We speak out and vent our discontent every day to each other. All the advocate is doing is reaching out to a larger perimeter of people. People who may be in a position to have an impact on fibromyalgia, chronic fatigue syndrome or chronic myofascial pain, finding the cause, education for the “right” treatments or fundraising for research. Advocates need to know they have backing from the community they are trying to help. Share what you do and support each other.

Being an advocate give a sense of having some control. Every motivational speaker will tell you, “if you want to be successful, surround yourself with successful people.” I say, “If you want to be an advocate surround yourself with people of like goals.”

"If I have seen further it is by standing on the shoulders of giants."
--Isaac Newton

Finding others with common goals

So, now we know you want to be an advocate, you want to have your voice heard. How do you go about it?

• Web search links to personal stories others are willing to tell, see who they support and do some research on them.

• If you are interested in medical research, go to www.pubmed.com and do a search for articles on fibromyalgia, chronic fatigue syndrome, or chronic myofascial pain from trigger points. Contact the author, usually there is an email for at least the lead author. Note who is supporting the recent research and look for people with a common interest.

• Be suspicious of any web pages that do not list resources. There is no gatekeeper for the internet.

• Avoid those asking for money without giving you valid reasons for wanting it, such as supporting research, providing education, speaking out politically. If they are using the money for the right reasons, believe me, they will make sure you know it.

• Reach outside your home base. In other words, look at what others outside the community are doing for you and contact them. This might include a chiropractor, physical therapist or massage therapist that specializes in trigger point therapy, an organization that specializes in pain advocacy or a group that works with neuroimmune or rare disorders. Network with them.

• Recruit people from your own local support group, or buddy up with someone from an online support group.

• Give credit where credit is due. Once you get yourself out there, you will be amazed at the amount of networking that goes on, people putting people in touch. Of course there are some who are very territorial; personally, I steer clear of these folks. You want to align yourself with people of like philosophy. Mine is that collaboration is the key to success. Why try to reinvent the wheel when there is so much to be learned from others who have walked the path before you?

• Be aware that there are people who take exception to anything you do. We are all tired, many of us in a fog, sleep deprived, and in pain so we don't always come off right either. Those who continue to rebuff you are not worth the waste of your energy. They for their own reasons are not likely to come around to your way of thinking, and there are plenty of people out there that are ready to hear what you have to say.

• Staying positively focused as an advocate is important. I still boo hoo to my close friends, but I keep it to a minimum in the community I serve.

Here is a copy of my latest advocacy letter to over 50 people (personalized of course) It is due to hit the air waves for the month of May. Feel free to copy any of it or all of it and use it for yourself. The only thing I ask is that you personalize it in some way so it will have a greater impact. All you have to do is send it to the contacts listed and you will be your own best advocate. Don’t be the person standing waiting for help to arrive assuming someone else has already called 9-1-1.

This is my 9-1-1 to you.

You may also find the letter at http://fmcfstriggerpoints.blogspot.com/2011/04/may-letter-on-proposed-fm-diagnostics.html

RE: Diagnostic Criteria for Fibromyalgia

Dear Ladies and Gentlemen, (Personalize unless it is being sent to multiple recipients)

First Gear “The hook” – A statement that will engage the reader

You probably already know that fibromyalgia is a disorder of the central nervous system that is further sensitized by input from the peripheral nervous system. But did you know that currently the proposed diagnostic criteria for fibromyalgia does not include assessment of Hashimoto’s Thyroiditis, even though the study by Bazzichi L et al) shows Hashimoto’s patients may have a link to fibromyalgia? Did you know there is a higher incidence of restless leg syndrome in the fibromyalgia patient than the general public? Did you know that scientists believe what were once thought to be specific diagramed “tender points,” used to diagnose fibromyalgia, are now thought to be knotted up pieces of muscle fiber called trigger points? Or that these trigger points, which are easily felt by a trained examiner unless the muscle is too taut, or the trigger point is deep beneath other muscle or behind bone, can radiate pain to other parts of the body? While it is possible that more research is needed to include the presence of Hashimoto’s or restless leg syndrome as part of the diagnostics, it should be considered in assessing the FM patient, and the research on the association of myofascial trigger points (resulting from excessive release of acetylcholine across the neuro-muscular junction) as peripheral pain generators to FM is staggering. (See the citations in the copies of letters attached).

Did you know that Dr. Janet Travell is the pioneer in understanding myofascial trigger points AND the first female physician in the Whitehouse? Did you know she treated President Kennedy for his personal chronic pain issues?

Second Gear “Personalization”

Fibromyalgia is a biological disorder. We have been inappropriately labeled far too long. Many have been psychologically bruised by the medical community. Touch me. Feel the knots in my muscles, test me for thyroid autoimmune disease, and perform a sleep study on me that shows you I moved my legs 187 times in 4 hours and never reached slow wave progression sleep. See what you come up with and then try to tell me it is all in my head.

Third Gear “History” (What is your relationship with this piece. Are you outraged? Have you taken this issue up with someone else? Are you in agreement with something someone else has had to say? You are welcome to make reference to my letters stating it is the correspondence from Celeste Cooper)

I have communicated my concerns as a patient, author and advocate to Mr. Clark, Public Liaison, National Institute of Health, NIAMS division, editor of Arthritis Today, who published “The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity” (see footnote) and the liaison for the American College of Rheumatology.

Fourth Gear “State your case”

While the authors of the preliminary proposed criteria for diagnosing fibromyalgia have done a good job defining the central and autonomic effects of FM, it is not complete without the assessment of the body-wide myofascial trigger points (MTrPs) fibromyalgia patients deal with. Restless leg syndrome and its counterpart periodic limb movement, found at greater rates in FM which may be a factor in sleep quality, may also be related to the dysfunction caused by peripheral MTrPs. And it is a patient’s right to have their metabolism restored in the face of thyroid disease and not overlooked as a symptom of fibromyalgia.

We need to avail all treatments including complimentary therapies. Pain and muscle dysfunction caused by myofascial trigger points should be treated with appropriate hands on therapy by those trained in the guidelines set forth by Dr. Janet Travell later joined by Dr. David Simons (first physician in outer space).

Full Speed Ahead “Provide for follow up”

Can we, the fibromyalgia community, and most likely someone you know personally, count on you to take a stand? Without your support, we can expect another decade of unresolved pain, fatigue and dysfunction. I don’t expect that assessing and addressing these additional issues will cure fibromyalgia, however we need a scientifically based protocol that is consistent among all those treating, researching, and educating this disabling disorder.

One cannot or should not ignore the science set before us. We need to move the science in the right direction until a cause and a cure is found. We need validation so that our government and others will help support the research necessary to help fibromyalgia patients get back to work, and lead productive lives. We need to be able to count on someone. If you are unable to facilitate, would you share information here with someone who is in that position, so that we maintain forward momentum.

Sincerely,
Signature [Type or sign your name here.]

Celeste Cooper, author of
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-authored with Jeff Miller, PhD)

You may contact me at ….
For more information visit, www.TheseThree.com

Attachments: [Name any attachments that support your letter and its content.]

October 20, 2011 letter
Letter to Mr. Clark, Public Liaison, NIAMS (NIH)

Copy: [List anyone you feel would benefit from knowing you have sent out your letter]

Resources: [If you have made reference to a particular article or research be sure to list the full citation].

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010.

Viola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" Journal of Clinical Sleep Medicine ,2010; 6: 423-427.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

9-1-1 FM Awareness Letter on Proposed Diagnostics in Template Form for Using

2011-04-29T05:54:00.000-07:00

The following is my letter which will be going out through the month of May to various physicians, researchers and professors. I have provided it in template form so that you may use it in anyway you desire. Feel free to use it as is as long as you state that it is written by Celeste Cooper, or change it up to make it yours.

Don’t be the person standing waiting for help to arrive assuming someone else has already called
9-1-1.

This is my 9-1-1 to you.

RE:
Diagnostic Criteria for Fibromyalgia

Dear Ladies and Gentlemen, (Personalize unless it is being sent to multiple recipients)

First Gear “The hook” – A statement that will engage the reader

You probably already know that fibromyalgia is a disorder of the central nervous system that is further sensitized by input from the peripheral nervous system. But did you know that currently the proposed diagnostic criteria for fibromyalgia does not include assessment of Hashimoto’s Thyroiditis, even though the study by Bazzichi L et al) shows Hashimoto’s patients may have a link to fibromyalgia? Did you know there is a higher incidence of restless leg syndrome in the fibromyalgia patient than the general public? Did you know that scientists believe what were once thought to be specific diagramed “tender points,” used to diagnose fibromyalgia, are now thought to be knotted up pieces of muscle fiber called trigger points? Or that these trigger points, which are easily felt by a trained examiner unless the muscle is too taut, or the trigger point is deep beneath other muscle or behind bone, can radiate pain to other parts of the body? While it is possible that more research is needed to include the presence of Hashimoto’s or restless leg syndrome as part of the diagnostics, it should be considered in assessing the FM patient, and the research on the association of myofascial trigger points (resulting from excessive release of acetylcholine across the neuro-muscular junction) as peripheral pain generators to FM is staggering. (See the citations in the copies of letters attached).

Did you know that Dr. Janet Travell is the pioneer in understanding myofascial trigger points AND the first female physician in the Whitehouse? Did you know she treated President Kennedy for his personal chronic pain issues?

Second Gear “Personalization”

Fibromyalgia is a biological disorder. We have been inappropriately labeled far too long. Many have been psychologically bruised by the medical community. Touch me. Feel the knots in my muscles, test me for thyroid autoimmune disease, and perform a sleep study on me that shows you I moved my legs 187 times in 4 hours and never reached slow wave progression sleep. See what you come up with and then try to tell me it is all in my head.

Third Gear “History” (What is your relationship with this piece. Are you outraged? Have you taken this issue up with someone else? Are you in agreement with something someone else has had to say? You are welcome to make reference to my letters stating it is the correspondence from Celeste Cooper)

I have communicated my concerns as a patient, author and advocate to Mr. Clark, Public Liaison, National Institute of Health, NIAMS division, editor of Arthritis Today, who published “The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity” (see footnote) and the liaison for the American College of Rheumatology.

Fourth Gear “State your case”

While the authors of the preliminary proposed criteria for diagnosing fibromyalgia have done a good job defining the central and autonomic effects of FM, it is not complete without the assessment of the body-wide myofascial trigger points (MTrPs) fibromyalgia patients deal with. Restless leg syndrome and its counterpart periodic limb movement, found at greater rates in FM which may be a factor in sleep quality, may also be related to the dysfunction caused by peripheral MTrPs. And it is a patient’s right to have their metabolism restored in the face of thyroid disease and not overlooked as a symptom of fibromyalgia.

We need to avail all treatments including complimentary therapies. Pain and muscle dysfunction caused by myofascial trigger points should be treated with appropriate hands on therapy by those trained in the guidelines set forth by Dr. Janet Travell later joined by Dr. David Simons (first physician in outer space).

Full Speed Ahead “Provide for follow up”

Can we, the fibromyalgia community, and most likely someone you know personally, count on you to take a stand? Without your support, we can expect another decade of unresolved pain, fatigue and dysfunction. I don’t expect that assessing and addressing these additional issues will cure fibromyalgia, however we need a scientifically based protocol that is consistent among all those treating, researching, and educating this disabling disorder.

One cannot or should not ignore the science set before us. We need to move the science in the right direction until a cause and a cure is found. We need validation so that our government and others will help support the research necessary to help fibromyalgia patients get back to work, and lead productive lives. We need to be able to count on someone. If you are unable to facilitate, would you share information here with someone who is in that position, so that we maintain forward momentum.

Sincerely,
Signature [Type or sign your name here.]

Celeste Cooper, author of
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (co-authored with Jeff Miller, PhD)

You may contact me at ….
For more information visit, www.TheseThree.com

Attachments: [Name any attachments that support your letter and its content.]

October 20, 2011 letter
Letter to Mr. Clark, Public Liaison, NIAMS (NIH)

Copy: [List anyone you feel would benefit from knowing you have sent out your letter]

Resources: (If you have made reference to a particular article or research be sure to list the full citation).

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010.,

Viola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" Journal of Clinical Sleep Medicine ,2010; 6: 423-427.

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The predetermined sites of examination for tender points in fibromyalgia syndrome are frequently associated with myofascial trigger points. J Pain. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

THE TREATMENT OF FIBROMYALGIA by Dr. John Whiteside with comments

2011-04-24T15:15:00.000-07:00

Dr. John Whiteside is an Australasian College physician and Fellow of the Australian College of Nutritional and Environmental Medicine. He specializes in treatment of myofascial conditions including fibromyalgia. He had the grand opportunity to be mentored by and study under the world renowned expert and pioneer of myofascial medicine, Janet Travell, MD and lectured with David Simons, MD who later joined Dr. Travell in her research and authorship of medical textbooks regarding myofascial trigger points.

Hear what Dr. Whiteside has to say regarding myofascial trigger points in fibromyalgia, perpetuating factors like: amalgam fillings, hormonal deficiency in female and male fibromyalgia patients, hypothyroidism, diet, and supplements. You will also read about compounding pharmacies, myofascial therapies, physical therapy, and holistic treatments.

THE TREATMENT OF FIBROMYALGIA
By Dr. John Whiteside

The following information is the approach I take with my patients. I have selected the main factors I believe require attention. A full detailed account of all the factors can be found in the book by Celeste Cooper, RN and Jeff Miller, PhD, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain.

A spectrum exists running from a simple localized myofascial pain syndrome such as a hamstring injury in a young athlete, to the widespread pain and fatigue of fibromyalgia. The common denominator is the myofascial trigger point. In the first case the number of trigger points are few and the client/patient is healthy with minimal or no perpetuating factors. In the second case there are multiple trigger points and the patient is very sick.

With the athlete, all we have to do is inject the trigger points, and recovery is quick and usually permanent. With the fibromyalgia patient, we need to ask, “Why did this illness develop?” and we need to remove as many perpetuating factors as possible to allow healing.

My approach is to attend to as many perpetuating factors as I can first, then begin a series of trigger point injections. In practice this is difficult, because by the time I get to see these patients, they are usually unfit for work and have limited financial resources. Attention to perpetuating factors requires money, and the course of trigger point injections can be very long.

PERPETUATING FACTORS

DENTAL

This may well be the most important perpetuating factor in our modern society. If you have any amalgam fillings or root canal filled teeth, I urge you to read very carefully all the detail on the web site by Dr Robert Gammal. Robert is the leading alternative dentist in Australia, (now retired). Please spend time following the links and consider purchasing the DVD’s. www.robertgammal.com

This, together with the book by George Meinig, Root Canal Cover-Up, is compulsory reading. George was a Founding Member, and past president, of the Endodontic Society of the USA. After a lifetime of doing and teaching root canal therapy, he reviewed the evidence and renounced all his previous work to teach of the dangers of this practice. The evidence in this book is clear and conclusive: root canal fillings and amalgam fillings are toxic to humans.

Over 50% of the patients that come to me for assessment have root canal filled teeth, and a higher percentage have amalgam amalgam fillings. If this is representative of the general population then, clearly, there are many people walking around without obvious pathology. However in those with pathology this is the first perpetuating factor I would correct.

I watched a DVD about the Paracelsus clinic in Switzerland. This is one of the world’s finest holistic clinics. At the end of the presentation, the doctor in charge of the clinic summarized the information. He said, “the people who come to our clinic get better because of all the different things we do, but if I was able to do one thing only for each patient I would remove all their root canal filled teeth and all their amalgam fillings.”

I appreciate that this is a very difficult decision for patients to make. I explain that I can give no guarantee that their clinical condition will improve if they remove their root canal filled teeth and amalgams. I ask only that they read the evidence and then as informed consumers make up their own minds. Since I became aware of holistic dentistry 5 years ago I have seen many patients who became ill following root canal therapy and many who became well after their removal. I am a convert. I had a single root canal filling done when I was 23 years of age. I suffered chronic sinusitis from around that time until I had that tooth extracted 5 years ago. Since then I have had no episodes of sinusitis at all. My energy levels have been amazing and I have felt for the first time in my life really well.

My daughter fractured a front tooth at age 12 years and had a root canal filling. In recent years she suffered from bleeding gums. She was studying in Tasmania. She flew to Perth mid 2010 and I arranged for her to have the root canal tooth extracted and the gap bridged. The bleeding gums ceased immediately. She telephoned me 2 weeks later and told me her studies were so much easier as the constant low grade flu feeling she suffered from all her life was gone.

I have no doubt that root canal fillings and amalgams are major causes of illness in our society.

[Celeste’s side note]. I dealt with a metallic taste and loss of the ability to smell for several months. During that period, I was evaluated by two different ear nose and throat specialists to no avail. I was put on a mouth wash to help with dry mouth, and evaluated by a dentist. Eventually this problem subsided, and at the time I believed the symptom improved because I switched from generic levothyroxin. As I look back, that period was the beginning of a series of crowns to replace large amalgam fillings because of severe bruxism. After reading what Dr. Whiteside has to say, it is my opinion; one should give serious consideration to replacing amalgam. I understand the expense; many insurance policies in the US will only cover amalgam because they are CHEAP! At least consider replacing them by attrition. This week I found a dentist that does not have amalgam in his office.

*Amalgam is a low cost mixture of mercury and metal used to restore teeth.

MALE AND FEMALE BIO-IDENTICAL HORMONE REPLACEMENT THERAPY (BHRT)
It is an indictment of our medical profession that these were never used as the treatment of choice in the first place. As we learned of the properties of the different hormones (progesterone, estrogen, DHEA, testosterone, etc.) , we had the ability to provide safe oral contraception to women and to provide safe treatment of heavy painful periods, premenstrual syndrome, post natal depression, and support the ageing process to minimize the onset of degenerative disease and cancer. But these substances were generic. They could not be patented. The Pharmaceutical Industry followed the dollar and proceeded to make and patent artificial hormones that were as close as possible to the real thing. But they were not the real thing, and they have been responsible, and continue to be responsible, for much of the illness we see in our modern society.

The best introduction is found in the Life Extension articles. Go to www.lef.org and enter bioidentical hormones into the search engine. For further research go to www.naturalnews.com and enter bioidentical HRT. Natural News is the best medical detective web site on the net. It is well researched and is not biased by product sales.

Fibromyalgia, women and BHRT

Fibromyalgia is more common in women. From puberty onward progesterone deficiency is common in women. In young women anovulatory cycles (absence of ovulation), produce no progesterone and in the cycles where an egg is released, often the progesterone production is less than optimal. Anovulatory cycles and luteal insufficiency are common due to the many stressors of modern life: poor diet, emotional stress causing excess cortisol, intensive exercise (elite female athletes frequently have no menstrual periods, with continual anovulatory status), and pollution. The use of the oral contraceptive pill containing false progesterone (progestagen) suppresses normal progesterone biochemistry.

Anovulatory, absence of ovulation
Luteal Insufficiency, less than optimal progesterone

Progesterone is the single most nourishing hormone for the female body. It is an antidepressant. It is a calmative, smoothing out mood swings. It is a diuretic assisting maintenance of ideal weight. It promotes deep delta wave sleep allowing better tissue repair overnight. It normalizes the blood clotting system to protect against deep vein thrombosis, heart attacks and strokes. It protects against breast cancer and osteoporosis. The “high” that most women feel in the last 2/3 of their pregnancies is due to the massive amount of progesterone produced from the placenta. It is a feel good hormone. When the placenta is delivered at childbirth this rich source of progesterone is removed and if the ovaries are low progesterone producers then post natal depression immediately follows. The treatment of post natal depression with bio-identical progesterone is quick and effective. These women are suffering from a low progesterone level, not an antidepressant deficiency.

There is no down side to the prescription of progesterone. There are no serious side effects. Because it can be given safely to all women, it is part of my regime for all women with fibromyalgia.

Estrogen is only needed for perimenopausal and post menopausal women. Before that time women suffer from estrogen dominance, mainly due to the pollution of our environment with false estrogens (xenoestrogens). This pollution is global, xenoestrogens are even found in the polar bears in the Arctic Circle. Perimenopausal and post menopausal women with fibromyalgia need a little estrogen in their cocktail.

DHEA and testosterone are repair hormones (androgens). In women they are very frequently suppressed by the progestagens in the oral contraceptive pill (OCP). It is really silly that the Pharmaceutical Industry made an artificial toxic substance that gave women the freedom to have sex without the fear of an unwanted pregnancy, while at the same time, suppressing the very hormones that make them want to have sex in the first place. How wonderful would it have been if they had made a bio-identical HRT oral contraceptive with progesterone and made women safe from blood clots and breast cancer and retained the repair properties of the androgens?

In women the androgens are produced in the adrenal glands and this function deteriorates with age. The production is also decreased by stress. Thus in a woman with fibromyalgia it is common to see low androgen production, and this problem becomes worse with age. After blood testing to confirm the fact, it is normally essential to include androgens in the cocktail for women with fibromyalgia.

Fibromyalgia, men and BHRT

In men, the main hormones that need attention are DHEA and testosterone. The most important is testosterone produced by the testes. Decreased production is documented as occurring from the 50’s onward, but I am seeing this in much younger men. This more widespread age group of presentation is again manly due to false estrogens (xenoestrogens) in the environment. A man with fibromyalgia must have his testosterone levels checked and if the levels are in the low normal range (not necessarily below the lower limit of normal), then a trial of testosterone therapy should be given. Correctly prescribed, the only contraindication to testosterone therapy is an established prostate cancer. Until the appearance of a prostate cancer, keeping the testosterone levels high protects against the development of prostate cancer. There are no other problems with testosterone in men. It is as good for men as progesterone is for women. Any man presenting to me with pain and fatigue, unless his blood levels are very high, will be given a trial of testosterone replacement.

Hormones for men and women to consider

Pregnenolone

Another hormone worth considering in both men and women is pregnenolone. This was widely used with great success for arthritic pain in the 1940’s, but fell out of favor when synthetic cortisone was developed and patented by the Pharmaceutical Industry. Pregnenolone was safe and effective and synthetic cortisone was dangerous, but pregnenolone was generic and again it was more important to make money than to heal people.

Thyroid hormone

The final hormone that needs attention in both men and women is thyroid hormone. Nutritional medical doctors look at where the thyroid levels are in relationship to the normal range. If the level of TSH (thyroid stimulating hormone) is in the upper half of the normal range (indicating low tissue thyroid levels, it is reciprocal), and the patient has symptoms of low thyroid function, then it is worth a trial of thyroid replacement. The main symptoms of low thyroid levels are fatigue, foggy brain, constipation, increasing weight, dry skin, and pain. Yes pain. Any patient with fibromyalgia must be seriously considered for a trial of thyroid replacement.

[Celeste’s side note]: “How does Hypothyroidism, Hypometabolism, Hashimoto’s and Thyroid Resistance Relate to Fibromyalgia of Chronic Fatigue Immunodysfunction?”

http://fmcfstriggerpoints.blogspot.com/2011/02/what-are-hypothyroidism-hypometabolism.html

Optimal thyroid replacement requires the prescription of both T4 and T3. Traditional medicine normally only prescribes T4. This must be converted to T3 to be active. T4 is a storage hormone and exerts no effect on its own. In patients with fibromyalgia this conversion may be sub-optimal and they will fail to benefit from T4 alone. T3 is best given as a slow release capsule dispensed from a compounding pharmacy.

With all the other hormones described above there are no serious problems with regard to side effects. With thyroid replacement it is important to know that too much thyroid hormone can cause palpitations. This problem can be minimized by taking high dose magnesium, together with a good quality multivitamin. It is also important to be careful about using other stimulants such as coffee. This should only be prescribed by a physician skilled in bio-identical HRT.

DIET
If you have fibromyalgia then your diet needs to be as non toxic as possible. The symptoms of fibromyalgia are emanating from widespread myofascial trigger points. To decrease the sensitivity of these trigger points we need to provide a clean, low allergy, high nutrient diet. Your diet should be organic as much as possible.

Dairy

I recommend removing all normal dairy produce from the diet. Normal dairy is genetically A1, a type of protein found in milk. The A1 cows produce milk containing the A1 beta-casein. After digestion this liberates a fragment called beta-casomorphine-7 (BCM7), a powerful opioid (narcotic). It is an oxidant, the opposite of antioxidant, and therefore acts as a free radical to damage tissues. From research beginning in 1993 it is now implicated in many illnesses, including heart disease, Type 1 diabetes, autism, and a range of auto-immune diseases.

The new A2, also a type of protein found in milk, is non allergenic. This milk has been available in Australia and New Zealand since 2003, and can now be found at select locations in the US. Goats and sheep milk and yoghurt and cheese are all A2 and can be consumed safely.

In New Zealand, the dairy farmers are secretly converting their herds to the A2 genotype. This takes about 10 years to complete. In 20 years time we may look back and see that this staple food we have been encouraging our children to eat has been one of the main causes of illness in our society.
If you have fibromyalgia you do not want A1 milk in your diet.

For further detail, I thoroughly recommend the book, Devil in the Milk by Thomas Cowan, MD.

[Celeste’s side note] Well folks, I Google searched this and it appears Hy-Vee Grocery in the Midwest is the only store that sells A2 milk. I suggest you do an on-line search on A2 milk and the benefits to those with allergies and gut problems, and see if you can find a distributor near you.

Gluten

The next most important food intolerance to consider is gluten. Gluten is the protein in grains, bread, cereal, and pasta. Gluten intolerance is common and it is the great mimicker of the 21st Century. It can mimic any illness. Any patient with fibromyalgia must be considered gluten intolerant until confidently excluded by a trial and challenge.

Traditional medicine describes celiac disease as true gluten intolerance and looks with suspicion on all those other alternative thinkers who talk about their gluten sensitivity. Traditional medicine uses a blood test for antibodies to gluten and endoscopy to take a sample of bowel lining to confirm or deny the existence of celiac disease. In my experience very few people have true celiac disease but many are intolerant to gluten.

[Celeste’s side note] The following is so commonsensical, if you don’t do anything else, DO THIS! This approach will give YOU control in your treatment. I am asked all the time, is there something I can do in my diet? Well, here you go.

The best way to test this is to eat a diet totally free of gluten for 3 weeks then challenge over 2 days by eating as much gluten as you can. If you are gluten intolerant you will have a very large reaction when you challenge.

If your challenge is negative, meaning it produces no aggravation of your symptoms, theoretically, you can bring gluten back into your diet. However, gluten foods are all foods that convert quickly to glucose and are therefore not good foods in the first place, so you will be healthier without them.

Sugar

The third most important item is sugar. Sugar is a poison. It contributes to leaky bowel syndrome and thus allows large allergenic molecules to pass through and set up auto-immune illness. Fibromyalgia is an autoimmune illness.

[Celeste’s side note] A great alternative to sugar and artificial sweeteners is honey. If you can get your hands on locally produced honey, all the better. Local pollen is carried by bees during pollination and may help desensitize you to allergens, boost your immune system, and decrease your need for antihistamines. The pitfalls and comorbid conditions regarding a high glycemic index diet are discussed in the book.

*caution: Because allergens are in amounts sufficient to desensitize the adult, honey can be toxic to an infant with allergies.

Increasingly it is documented that if you can keep your insulin levels consistently low then you will enjoy the optimal level of health. Thus you need to avoid all foods that quickly convert to glucose, and this includes the gluten foods.

The diet I recommend, and the diet I eat myself, is as follows.

Breakfast

For breakfast a protein shake is best. I recommend a specific product “The Sun Warrior” brand protein (contact www.sunwarrior.com to find your local distributor in the USA). This is made from bio-fermented raw sprouted whole grain brown rice, and sweetened with Stevia ®. There are no artificial chemicals and no sugar. Please note I have no financial connection to this company apart from retailing their product through my clinic.

Make up a shake in a blender with the powder alone or add a banana and/or frozen blueberries if desired. As a general rule one scoop per day is sufficient for a sedentary person. This can be increased to 2 or 3 scoops as your exercise levels increase.

An alternative to this would be a cooked breakfast, such as, an omelet.

The rest of the day

Eat normal food; red meat, chicken, sea food, vegetables, salad, nuts, seeds, fruit. If you get hungry, have another protein shake. This is a low allergy, low sugar diet. It is what I eat and I have plenty of energy. I am 66 years of age, work out at the gym 3 times per week, do my clinical work Monday to Friday, and spend time at the computer on the weekends. It works for me!

If you have fibromyalgia it important you consider this type of healthy eating.

NUTRITIONAL SUPPLEMENTS

Even if you are eating a totally organic diet including your meat, chicken, and fish, you are still exposed to all the pollutants in the environment. You will benefit from good quality nutritional supplements.

There are 2 groups of supplements. There are those that are necessary to build the foundations of your health. These are high dose B vitamins, magnesium, zinc, selenium, C, E, D, other trace minerals, and omega 3 fatty acids. Then there is everything else. I call this group the “add ons”. This includes all the many things marketed as the best thing for your health; spirulina, Gogi berries, acai berries, etc. these are all beneficial but are of little use unless you have first laid down the foundation.

Over the nearly 20 years of practicing nutritional medicine I have tested many different combinations. I have settled on the Usana brand as the world’s best. I state here that I am not distributor of this product. I do retail the product through my clinic and if you wish to have this distributed to your home you can contact my wholesaler Vitaly and Jenny Orban at jenovita@bigpond.com

If you begin with the Usana Essentials supplement you will have all the items needed to build the foundation for your program. If you add the Usana Biomega, then you will have good quality clean omega 3 fatty acids. For fibromyalgia patients, I would also recommend Cal Plus. This is a high dose calcium and magnesium tablet. If you take T3 and T4, I would definitely add Cal Plus.

If you do not want to purchase the Usana brand, try to get the highest dose multi containing the items noted above.

[Celeste’s side note] Because you should take thyroid medication on an empty stomach, and some vitamins and supplements, particularly calcium and magnesium, can interfere with absorption, either wait four hours or switch to taking your thyroid medication at night.

PHYSICAL THERAPY

When all the above items are attended to, then you are ready for physical therapy. The best therapy is the local anesthetic injections by a skilled doctor. The next best is the use of acupuncture needles to release trigger points. This is usually called dry needling or intramuscular stimulation. If you cannot find therapists with the above techniques then the next best therapy is good old fashioned deep tissue massage. This needs to begin gently and gradually increase in intensity as you heal. This will take a very long time. But if you correct the perpetuating factors I have noted above, then weekly massage over many months should see gradual recovery.

[Celeste’s side note] Here in the US other modalities may be available to you, which include myofascial trigger point therapy, myofascial release, and active release therapy (ART). Specialists you might want to consider for treatment are physical therapists, physiatrists, sports medicine physicians, chiropractor’s, and pain management physicians trained to treat myofascial trigger points. I have not been able to convince pain management doctors in my care to leave out the steroids, which have not been shown to be of any greater benefit in the FM patient, limits the number of trigger points (TrPs) that can be treated and can cause trigger points to calcify. That is why I see a sports medicine physician that understands fibromyalgia and myofascial trigger points. However, even she will not treat more than 5-7 TrPs at a time and will not inject those in the neck, which are a primary source of dysfunction.

SUMMARY

1. Begin Bio-identical HRT. Look in the telephone book for Compounding Pharmacists in your area. They will give you a list of the doctors that send them prescriptions. These should know how to prescribe your bio-identical hormones. I prefer the use of a troche rather than the creams. A good starting point is for a woman is a troche with progesterone 200 mg, taken a ¼ twice daily. For perimenopausal and menopausal women I would add Biest 1mg, and if the blood tests showed low normal range testosterone and DHEA, I would add DHEA 25 mg and testosterone 4 mg. This is a perfectly safe mixture and you can take this all your life. (disclaimer: in this litigation conscious age I state that taking BHRT will not totally eliminate the chance of developing breast cancer, or having a heart attack or stroke, but there is good evidence to suggest it will reduce your chances of these conditions. You must read the evidence and make your own decision)

For thyroid replacement a safe beginning would be T4, 50 mcg per day and T3 in a slow release capsule 10 mcg per day. You will need to find a doctor to monitor this.

2. Eliminate dairy, gluten, and sugar from your diet.

3. Remove all root canal fillings and amalgams. Follow the links on the site www.robertgammal.com to find an alternative dentist near you.

4. Ideally begin Usana Essentials and Biomega.

5. Begin physical therapy.

[Celeste’s side note] In the United States, we are split between seeing a rheumatologist that only looks at the centralization of fibromyalgia, and someone to treat myofascial trigger points. This is grueling, disconnected, and lacks continuity of care. Australia is lucky to have Dr. Whiteside, who is taking into account all aspects of fibromyalgia, the centralization, effects on the immune system, treatment for myofascial trigger points AND therapies that address each person individually.

Learn more about Dr. Whiteside at http://www.myomed.com.au/ and be sure to click on the download button and watch the video in the supplements link.

Letter to Obama Regarding ME/CFS

2011-04-24T11:21:00.000-07:00

http://www.whitehouse.gov/contact

Dear Mr. President,

I am a fibromyalgia (FM) patient also diagnosed with chronic fatigue syndrome (ME/CFS) following a prolonged period of extreme fatigue. Eventually, I was diagnosed with Hashimoto’s Thyroiditis, an autoimmune disorder of the thyroid. Because there is a crossover of symptoms between FM, ME/CFS, and hypothyroidism, we need definitive testing. This will not occur without research.

My story does not stop here. My sister (by marriage), and best friend, was also diagnosed with FM, and a cavalier diagnosis of ME/CFS. She was treated with anti-epileptics, antidepressants, benzodiazepines and pain medications (which significantly altered her once bouncy and kind personality), but never an antiviral regime.

As a nurse and author on FM, ME/CFS and myofascial pain, I always suspected, and told her, she needed further evaluation for the biological factors involved in ME/CFS. She did have an unexplained elevated ANA, was mostly bedridden, and her immune system was broken. However, finding a doctor equipped to diagnose ME/CFS appropriately is a difficult.

She would fall asleep at the table. Those around her believed her symptoms were because of medications and I do believe they were a contributing factor. As most of us, she endured numerous drug trials with psychiatric drugs, which provided an eight year mask. Even before she was disabled, she would come home from work for lunch and fall asleep. I told people around me repeatedly, I suspected her primary problem was ME/CFS. However, those who do not understand this disease only compounded her difficulty with coping and provided little, if no, support.

I remember with grief that fateful day my once best friend was transported to the ER. She had severe pneumonia. This was not her first bout of pneumonia either, despite having had pneumonia vaccines and boosters. She was put in a drug induced coma and placed on a ventilator. This scenario continued for months. Eventually, her lungs became strong enough to wake her up, except she never really woke up. You see, her brain was in constant seizure. She was re-hospitalized and placed in a coma several times before her brain gave up. For a year she suffered in a near vegetative state with periodic glimpses of recognition. Her fight was over in September 2010.

Chronic fatigue syndrome takes lives. My best friend was only 55 years old.

Please help us. Support research into the cause, biological markers, and helpful treatments.

Sincerely, Celeste Cooper, RN

Fibromyalgia (FM) and Myofascial Pain Syndromes (MPS) by Dr. John Whiteside

2011-03-24T08:58:00.000-07:00

Intro, by Celeste

I became interested in Dr. John Whiteside’s work when on my quest to find out what was happening to my musculoskeletal system. In an effort to learn all I could on how to make myself better, which as you all know eventually ended up in the book, I Goggled trigger point and Travell and Simons and I read nearly everything I could get my hands on. One of those things was what Dr. Whiteside had to say about treating myofascial trigger points (MTrPs) in his practice in Australia.

I knew there was more to my pain than the tender point model of fibromyalgia. I was concerned as to why I had these “knots” in my muscles that were referring pain, and numbness and wondered if all patients diagnosed with fibromyalgia were experiencing this same painful phenomenon.

(See my blog, Unveiling Myofascial Trigger Points in Fibromyalgia, http://fmcfstriggerpoints.blogspot.com/2011/03/unveiling-myofascial-trigger-points-in.html)

I consider Dr. John Whiteside a friend, an advocate, and a true healer. He has been kind enough to offer up the following information for me to share with you.

Fibromyalgia (FM) and Myofascial Pain Syndromes (MPS).

By Dr John Whiteside, MBBS, BSc, FACNEM.

I became aware of the work of Dr Travell when I was working in general practice medicine in 1987. I began to treat patients using trigger point injections and soon confirmed her teachings that myofascial pain syndromes were common. Dr Travell told me in 1988 that in her experience myofascial pain was more common than the common cold. She said that Family Medicine doctors, each day, saw more MPS than any other condition, but it remained undiagnosed.

In the latter half of 1987 I learned that many medical illnesses were partly caused by myofascial trigger points. Trigger points in the sternocleidomastoid muscle frequently produce dizziness, trigger points in the chest wall can produce exercise induced asthma, trigger points in the erector spinae are a common cause of heavy, painful periods. It was clear that the work of Dr Travell revealed a totally new paradigm for general medicine. I began to refer to this work as Myofascial Medicine.

It was this recognition that myofascial trigger points were ubiquitous, and that they contributed so much to many named medical illnesses, that forced me out of Family Medicine. I found it impossible to continue writing prescriptions for pharmaceutical drugs to treat the symptoms of illness, when there was a way available to treat the cause. I opened my specialty practice in Myofascial Medicine in 1988.

To further understand the importance of perpetuating factors I completed my training at the Australasian College of Nutritional and Environmental Medicine (ACNEM), obtaining a Fellowship in 1996 (FACNEM).

Over the past 23 years I have worked full time doing trigger point injections as taught by Dr Travell. I have treated over 20,000 patients with local and regional MPS and FM. I present to you the following information generated from my hands on practical experience.

Fibromyalgia

Fibromyalgia is just a word, a collective noun, coined to group together the symptoms of patients with chronic widespread pain. Myofascial Pain Syndrome refers to an actual physical entity.

Some 20 years ago the leading rheumatologists in the world met to tidy up the nomenclature related to chronic pain. “How can we share our research if we are all speaking about different things? Let us all agree on one definition. “So they discussed this and came to an agreement that the new term would be Fibromyalgia, and that it would be defined as “widespread pain lasting more than three months and when examined by a health practitioner the patient would exhibit local tenderness at eleven of eighteen specific sites.” The specific sites were chosen in an arbitrary fashion to be inclusive of the four body quadrants.

From this point on, when patients presented to doctors with widespread pain and tenderness they would be told that they had fibromyalgia. Many were grateful to at last be given a diagnosis but when they asked what caused it, they were told “we do not know”. When they asked what can be done to cure it they were told, “there is no cure, but you may be helped with certain pharmaceutical medication.”

The more astute patient would ask,” what does fibromyalgia mean?” only to be told that it means you have widespread pain and tenderness. If they had the courage they would tell the doctor that is what they told him in the first place, and all the doctor had done was give it a medical name. But most were happy to have a name that they could give to friends and family, join a local fibromyalgia self help group, and take their drugs.

Fibromyalgia is only a name. It is only a word. Like the word intuition, some people have it, some do not. We know what it is, but do not know where it comes from.

Myofascial pain

Myofascial pain is totally different. It is based on real palpable entities; trigger points existing along taut bands within skeletal muscles.

In the early 1940’s Dr Travell developed chronic right arm pain as a result of handwriting research papers. She suffered with this for many months because all treatment options available to her failed. She returned to the scientific literature, and found, across the previous 100 years, a very small number of scattered reports describing trigger points in muscles. These trigger points were palpable entities, with observable physical properties. They actually existed. They could be felt beneath the examining fingers. They exhibited specific observable behavior; they exhibited a twitch response when plucked, they referred pain to another anatomical region when pressed, and when injected with local anesthetic they briskly twitched then became inactive.

Dr Travell examined her own muscles and found trigger points in her right arm and shoulder. Her father was a physician. She asked him to inject these physical entities with procaine, and after a sufficient course of therapy she obtained a complete recovery. Her career path changed and she spent the second half of her life documenting the properties of these real palpable physical entities.

Side note from Celeste:

MPS=myofascial pain syndrome
CMP=chronic myofascial pain
MPS=CMP

Devin Starlanyl, my mentor, saw MPS being used interchangeably with conditions of the mouth and jaw, which no doubt are related to myofascial trigger points, however, it was leading to confusion. Myofascial trigger points (MTrPs) can exist anywhere there is muscle tissue from the smallest to the largest, from the deepest to the most superficial to the end where muscle attaches to bone. To avoid confusion, she, and I following in her footsteps refer to the disease at the neuromotor endplate (excessive release of acetylcholine, a chemical that relays information to the brain) as chronic myofascial pain, CMP. Most still refer to the disease as MPS.

The acceptance of FM and MPS

Why is FM accepted so easily in the medical community and MPS considered so “alternative”? The answer is that FM is easy and is treated with drugs, while MPS is difficult and requires hard earned practical skills to treat.

Any doctor can learn all that is needed to treat FM in one hour. The patient tells you that they have widespread pain and tenderness, normally together with disturbed sleep, fatigue, and depression. A quick physical examination allows you to elicit tenderness at eleven or more of eighteen specific anatomical sites. You confidently give the patient a diagnosis of FM, together with a prescription for a drug, and a referral to the local FM network group. Consultation completed, next patient please. This is easy to do in the busy day of Family Medicine.

To further support this process the Medical Benefit Organizations have an item number for FM, so you get paid, the patient gets reimbursed, and the Medical Board supports your action in prescribing the drug. The entire protocol is underwritten by the senior specialists and the research is heavily supported by the pharmaceutical industry.

Existing institutions have inertia, and large institutions are almost stationary

Myofascial Medicine is different. Although it is based on real physical entities, it is strangely hard to see. The most effective way of seeing it is to use local anesthetic trigger point injections. These can only be done by medical practitioners and to see the results the doctor has to do them. Doing them takes practice. It is time consuming. It does not have an item number so the extra time devoted to the procedure cannot be financially reimbursed until the doctor becomes so good at the work that he can bill privately an appropriate fee.

To convince busy doctors already earning good incomes from fast drug based medicine to take time out to learn Myofascial Medicine is like reciting Shakespeare in a storm. It may make the actor feel good, but no one can hear him.

Most of the advance work is being done by a devoted number of non doctor therapists; nurses, physiotherapists, occupational therapists, masseurs etc. These people are well educated in the area of Myofascial Medicine but have less ability to effect major therapeutic change because they are denied access to the most powerful tool, local anesthetic trigger point injections. They are also limited by the same things noted above, no item numbers, and poor financial return.

My professional experience

In the early years I was puzzled by the ubiquitous nature of myofascial trigger points. Why were they there? Why were they in such well localized anatomical locations? Why did they refer their pain, or more correctly, their pattern of influence?

The sternocleidomastoid muscles in particular harbored a deep and important mystery. Here were two muscles attached to take maximum advantage of the vectors associated with the movement of the head on the neck. They were fast muscles with intimate neural connections to balance, sight, hearing, and the health of the mucous membranes in the nose and paranasal sinuses (smell). When they developed trigger points they produced dysfunction in these senses. Those of us trained in myofascial medicine noted these symptoms and were drawn to examine the muscles to find the trigger points and then to treat them. But what did this mean?

The long muscles of the back, the erector spinae, when they develop trigger points, refer their pattern of influence to the muscles of the pelvis. Treating these causes a reduction in the intensity and the pain of the menstrual period by relaxing the uterine muscle. Women with endometriosis very frequently suffer low back pain. Do the trigger points in the erector spinae contribute to retrograde peristalsis of the Fallopian tubes and allow for movement of endometrial tissue to the peritoneal cavity and thus cause this common medical condition? Do they also, separately, by the same mechanism impede the normal passage of the egg from ovary to uterus, and contribute to the problem of infertility? What does this mean?

The puzzle was solved, in my mind, when it dawned on me that we were looking at the pathological manifestation of something physiological within the muscle. The ubiquitous nature of the trigger points, together with their reliable pattern of influence (so meticulously documented by Dr Travell), must mean we were looking at an abnormal expression of a fundamental physiological system of truly wondrous importance to our understanding of life.

Medical research, throughout history, has largely started with disease. It is by investigating the illness that we learn about the normal physiology beneath. The manifestations of diabetes have been known for thousands of years. The research into the illness allowed us to understand how the regulation of the pancreas functions in healthy life. The documentation of the effects of a blood clot or bleed in the brain can be found in the very earliest medical text books. The investigation of this pathology contributed to our understanding of normal neural pathways. So, I believe, must be the case with Myofascial Medicine.

Time after time, case after case, I released myofascial trigger points using the techniques taught by Dr Travell, and observed the pattern of influence of that specific focal point within that muscle disappear. The skeletal muscles contained a patterned system of communication. They talked to each other. They were intimately connected to all the elements in the body that allowed for normal function.

The answer to the puzzle was what happened when the myofascial trigger point was not pathologically “active.”

When the sternocleidomastoid muscles were healthy the balance and coordination of the special senses in the head and neck was optimal. The primitive animal or man could see and hear more clearly, had better balance and coordination, could hunt better, fight better, and survive better.

When the erector spinae muscles were healthy in the primitive female the individual had a more reliable menstrual cycle, lost less blood, and was more fertile.

I reflected on the evolution of biological systems and noted the appearance of the skeletal muscle proteins at the very origin of single cell life, the prokaryotes, appearing some 3,500 million years ago. Within these cells exists a cytoskeletonof microtubules together with a network of filaments that connect them. These are made up of complex polymers of many different proteins, including actin and myosin, the two proteins that dominate the skeletal muscle system in man. And what do these primitive structures do? The interior of the cell is in continuous motion, and the cytoskeleton provides the machinery for intracellular movement.

At the very beginning of life, the ancestor of our skeletal muscle system appeared as an intrinsic component of the movement of life. They appeared together. At that point, and onward, the skeletal muscle system was intimately and continuously aware of all other processes occurring in that living organism.

For 2,000 million years this was the only form of life. Then came the eukaryotes, still single cell organisms, but now they had a nucleus. These appeared some 1,400 million years ago and remained the most complex form of life on earth for the next 600 million years before the first and simplest multi cellular organisms developed, about 800 million years ago. At this point the nervous system begins to develop and by 600 million years ago the chordates appear with the primitive notochord.

If we reflect on this we see that the origins of the skeletal muscle system are in existence and functioning intimately with all the other systems of the living organism some 3,500 million years ago. It is only some 600 million years ago that multicellular organisms appeared and made it necessary for evolution to develop a nervous system. In other words the nervous system only appeared in the last 15% of the evolutionary process. It only appeared when the muscular system alone could not process all the information required by the gradually larger and more complex multicellular organisms. If you like, the skeletal muscle system called upon evolution to create a nervous system to help it do its work.

It is for these reasons; I believe with Myofascial Medicine, we are looking at a fundamental body of knowledge so deep and profound that when we fully understand it, and it is incorporated into daily mainstream use by medical practitioners, it will change the whole paradigm of medicine. I believe, in time, the work of Travell will be seen in the same light as that of other great pioneers, such as Darwin. I believe she will be seen as the greatest medical pioneer of the 20th century.

Unveiling Myofascial Trigger Points in Fibromyalgia

2011-03-22T09:28:00.000-07:00

Fibromyalgia is a central nervous system state of sensitization, whereas myofascial pain due to trigger points is a peripheral neuromuscular problem (outside the CNS, nerve to muscle), but it seems the two have a greater connection than we ever imagined.

Trigger points are myofascial areas of knotted up muscle fibers in a taut band of muscle. They are EASILY felt unless behind bone or other muscles, or the band of muscle affected is too tight, in which case "specific myofascial therapy," such as TrP myotherapy, and/or TrP injection, are necessary, and frequency specific microcurrent, may be needed to loosen the muscle enough to locate the trigger point (TrP).

M = Myofascial
TrP = Trigger point, synonymous with
MTrP = Myofascial trigger point
FM = Fibromyalgia
CMP = Chronic myofascial pain

We look forward to further research on the relationship of peripheral pain generation by MTrPs and wind-up in the FM brain, but we must embrace present information as we never have before. There are treatments for us that will help, myofascial trigger point therapies, yet rheumatologists writing the proposed criteria are ignoring it. We as the patient, the one living with this pain every day, must demand that they pay attention to the research so we may have treatments that are successful.

I am concerned about pharmaceutical companies being bedfellows with those in charge of our care. They seem to have a death grip on our physicians and us too. How did we get to a place where we are brainwashed into believing that take a pill and all will be well? Given in the right amount, the right drug, for the right problem medications are a good thing, however, when we know myofascial trigger points are part of the pain generation in FM, we need to ask, "why are we not being referred for proper physical care by those trained in myofascial medicine?"

The literature shows us not all people with myofascial trigger points (MTrPs) have centralization, in this case, fibromyalgia, but most, if not all,FM patients have myofascial trigger points (MTrPs). We need to understand why this phenomenon occurs in FM, as well as, phenomena such as RLS, which we now know is ten times more likely to occur in FM. Restless leg syndrome could explain, at least in part, dysfunctional sleep (1), but understanding the orchestration of the brain in any disease process is complicated. Since learning more about these two occurrences, ignoring the importance of a physical exam in diagnosing FM will lead us, the patient, researchers and clinicians, down another twenty years of unsuccessful outcome. As Dr. Bennett has said, it is like “throwing the baby out with the bathwater.” (2) Restless leg syndrome could also have a myofascial component with centralization, but how would we know without a physical assessment by someone educated to do so?

We also know autoimmune thyroid problems may be a risk factor in the FM. (Bazzichi L, et.al, 2010. Hashimoto's Thyroiditis and hypothyroid are also a perpetuator of MTrPs (Starlanyl & Copeland, 2002). Hello people!

Myofascial TrPs are palpable, rendering an objective measurement of disease. And, thanks to the work of scientists dedicated to explaining myofascial trigger point (MTrPs) we know that there is irritability and pain associated with the excessive endplate noise at the MTrP, (Kuan, et. al, 2007) and that certain biochemicals are present. (Shah, et. al, 2007) When these TrPs are treated with pressure therapy, injections, or dry needling, the "twitch response" is visualized by the practitioner and felt by the patient. This has not been described in the “tender point model” of FM, or the present diagnostic criteria set by the American College of Rheumatology (ACR).

The newer study “The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated with Myofascial Trigger Points” (Ge HY, et al. 2009), suggests that possibly all FM patients also have CMP (chronic myofascial pain from trigger points. My question is "Were the ACR patients screened for the presence of myofascial trigger points?" "Did the examiners know enough about TrPs to know to look for them or that they cause significant pain, dysfunction and referral of symptoms?" "Did they know presence of these TrPs provides criterion that takes FM out of the subjective complaints only arena?" What we know for certain is that FM, and CMP, can and do co-exist in the same patient.

Fibromyalgia is a central sensitization problem brought on by a dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis. Chronic myofascial trigger points and pain (CMP) is a peripheral nerve to muscle problem (Hong and Simons, 1998). FM, ME/CFS, migraine, IBS, irritable bladder and several other common co-existing conditions that escape me right now, also have a strong central nervous system component. As an example, the pain of a cervicogenic migraine is helped a great deal by myofasical therapy. (DeLaune, 2008). These patients may not have FM, but there is also a strong centralization issue in Migraine, whether they meet the current FM diagnostics or not.

A new application of ultrasound imaging and vibration soloelastography includes 2 dimensional greyscale and vibration sonoelastography imaging of a myofascial trigger point [in the upper trapezius] and specifically identifies MTrPs from surrounding tissue, more objective criteria. This new science will be a helpful tool to the clinician for evaluating palpable myofascial TrPs. In addition, the study also shows that as many as 85-93% of chronic pain patients seen in pain management clinics have myofascial trigger points (MTrPs). This does not mean that they all have FM, but if their TrPs are perpetual, meaning they are perpetuated by even a light breeze, and not chronic, meaning they are not responding to therapy, they certainly could have an undiagnosed FM component.

When any centralization disorder, like FM, co-exists with chronic myofascial pain (CMP) from TrPs, the peripheral message of painful trigger points to the brain keeps the brain in a hypersensitive state," causing a “wind up” phenomenon and dysfunction of the HPA-axis (also seen in CFID/CFS/ME) is off and running. Think about the patient that has FM, ME/CFS, CMP, migraine, IBS, and irritable bladder. You may be one, I am.

"It's not about the rough ride, remembering life is like a safari. Sometimes I have to look for that, but I always find it, so I must be certain, it is always there for the taking." - Celeste

You can learn more about myofasical trigger points, fibromyalgia and chronic fatigue syndrome, and therapies that help in our book.

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN and Jeff Miller, PhD

Resources:

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. Rheumatol Int. Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia? 2010 Nov 18. [Epub ahead of print]
V. DeLaune, Trigger Point Therapy for Headaches and Migraines: Your Self-Treatment Workbook for Pain Relief. (Oakland: New Harbinger, 2008.)

HY Ge , Y Wang, B. Danneskiold-Samsøe , et. Al., “The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points.” Pain. 2009 Nov 13.

C. Z. Hong, “New Trends in myofascial pain syndrome,” Zhonghua Yi Xue Za Zhi (Taipei) 65, no. 11 (2002): 501–12.

C. Z. Hong and D. G. Simons, “Pathophysiologic and electrophysiologic mechanisms of myofascial trigger points,” Archives of Physical Medicine and Rehabilitation 79, no. 7 (1998): 863–72.

T.S. Kuan, Y.L. Hsieh, S.M. Chen, J.T. Chen, W.C. Yen, C.Z. Hong. “Re: The myofascial trigger point region: correlation between the degree of irritability and the prevalence of endplate noise.” Am J Phys Med Rehabil. 2007 Dec;86(12):1033-4; author reply 1034.S.

D. M. Niddam, R. C. Chan, S. H. Lee, T. C. Yeh, and J. C. Hsieh, “Central representation of hyperalgesia from myofascial trigger point,” NeuroImage 39 (2008): 1299–1306.

J.P Shah, S. Parikh, J. Danoff, L.H.Gerber,” Re: The myofascial trigger point region: correlation between the degree of irritability and the prevalence of endplate noise.” Am J Phys Med Rehabil. 2007 Mar;86(3):183-9.

Sikdar, J.P. Shah, E. Gilliams et al. 2008. “Assessment of myofascial trigger points (MTrPs): A new application of ultrasound imaging and vibration soloelastography.” Arch Phys Med Rehab 89(11): 2041-2226.

D. G. Simons and S. Mense, “Diagnosis and therapy of myofascial trigger points,” Schmerz 17, no. 6 (2003): 419–24.

D.G. Simons, J.Travell, and L. S. Simons, Myofascial Pain and Dysfunction: The Trigger Point Manual, 2nd ed. (Baltimore: Williams and Wilkins, 1999.)

Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome: A
Survival Manual, 44.

Chronic Pain Thoughts, Tidbits, and Insight: Response to an article

2011-03-09T18:36:00.000-08:00

THIS WAY IN: How to Use Pain Meds Safely
Neurology Now
February/March 2011; Volume 7(1); p 10–11,15
VALEO, TOM

http://www.aan.com/elibrary/neurologynow/?event=home.showArticle&id=ovid.com:/bib/ovftdb/01222928-201107010-00005

Click on Download article, PDF or view each hyperlink

This is a good article on the benefits and pitfalls of opioids. I believe, opioids should be considered for treatment of pain with medications, especially when other treatment modalities have failed. I have to disagree that doses must be elevated due to tolerance, because some research shows that is not true for all people. Antidepressants and anti-seizure medications are also abused and people die from them, but we don’t hear about these cases because BIG pharma somehow keeps these incidents undercover. The FDA doesn’t go after the data on incidents regarding these type of medications. Most of what we hear is what can be sensationalized by reporters. Reporters want headlines that sell. The political money band plays on.

Any medication/drug taken for a reason other than intended is abuse. Improving function is the goal, obtaining enough pain relief to participate in myofasical therapy, get out of a chair, bathe, comb your hair, put on makeup, smile at yourself in the mirror, participate in the day, and interact with family and friends without having to painfully force air over the vocal cords in an effort to talk.

The Pain Patient (Pseudo-addiction) (Cooper and Miller, pg.171-172)

*Medications improve their quality of life. They are in control of their medications.
*The pain patient will want to decrease the medication if side effects are present.
*The pain patient is concerned about physical problems.
*The pain patient follows the contract for the use of opioids. (Pain specialists
will most likely have you sign a contract with them stating that you will follow
their prescribing instructions.)
*The pain patient will have medication left over.

The Addict

*The medications cause a decreased quality of life. An addict is out of control with
medication.
*The addict will want to continue medication regardless of side effects.
*The addict is in denial.
*The addict doesn’t follow the contract for the use of opioids.
*The addict doesn’t have medication left over. Addicts lose prescriptions and always
have a story.

The preceding lists are an excerpt from Fibromyalgia Network, April, 2001, based on Dr. Heit’s work at the Georgetown University School of Medicine (2001) and Dr. Heit’s presentation, “Opioid Prescribing: An Update on Clinical, Ethical and Legal Guidelines” from the Journal of Law, Medicine & Ethics, 22(3) 252–56, (Fall) 1994.

The laws currently written are to protect us, however, the shenanigans of drug seekers and physicians who feed their habit to make a dollar, helping them rid their addiction, keeps the patient in debilitating pain, wallowing in misery and emotionally handicapped. And then they have the gall to insinuate we are to blame for our pain state.

On the other hand, more patient education regarding the pitfalls of opioid therapy is needed. With conditions such as ours it takes a multimodal treatment course to feel better. When our pain in not under control it is impossible to tolerate treatments and activity known to help. It is unreasonable for us to expect, even with pain meds, to be pain free. It is not, nor should it be the main goal. What we need from any of our medications is enough relief to participate in activities and treatments. We are entitled to have enough pain control to avoid the snare of a hypersensitive state, which will keep our brain in a constant wind up. Once this wind-up phenomenon takes place, it takes twice the effort to bring the pain response back under our watchful supervision. We know, or should know, what aggravates our pain (Chapter 2 – Communicating Your Healthcare Needs, pgs. 65-132). It should be up to us to decide what enough is and what too much is. The road to a more productive life is paved with pain medications that afford us the opportunity to move, one step at a time. The golden brick is that one with the face of, movement, thought, physical therapies and emotional support engraved with your name.

A course of treatment that has worked for some is a tapered opioid vacation every couple of months for about a week, so the body doesn't get used to craving more and more. They are called mini med vacations and are supplemented with other meds to help and it is supervised and administered by a qualified physician. More studies need to be done on this because my biggest fear is that we don’t know the end place on opioid dosing until it is too late. Why take unnecessary risk? I understand pain only too well, but as most of us who have been on opioid therapy will tell you, it never takes the pain completely away, and still allows you to get up and move about. We must participate and have our own plan. We need to be empowered. And, we need control over what medication helps us. If the government continues to walk hand and hand with pharmaceuticals, one day our rights pain relief, will be completely stripped. As honest chronic pain patients we need to take this responsibility seriously.

I understand that what works for me, may not work for someone else. For me, it is about balance of spiritual, mental, physical and emotional, collaboration with my healthcare provider, and acceptance. I like to think that because of chronic life altering pain, I have learned the importance of appreciating days I might otherwise take for granted.

I think the alternative drugs, the Savellas, Lyrica, Cymbalta come with their own package of unwanted side effects and alter the brain chemistry and interact with many other medications we take for comorbid conditions such as migraine and IBS. The pharmaceutical industry has financial and political power beyond our comprehension. If a patient ONLY needs one medication and these class of drugs work for them, I am all over it. It is about improving function, but it should be our option, not something dictated to us by our government, putting themselves between the patient and the physician for profitability.

Give us the right to choose what is best for us. Let us have the medication that promotes enough pain relief so we can participate in trigger point therapies, Yoga, T’ai Chi, acupuncture, myofascial release, active release therapy, or even a light massage. Shouldn’t that be a right, not a privilege?

We are intelligent people here. Our goal is to feel well enough to wake up to a bright day. We must not ignore the pitfalls of opioid use, but we have proven over and over again that the pain patient is NOT going to abuse their medications. If one man steals in a community does that mean it is a community of thieves? Even if I do start to abuse my opioid, one in ten will, can’t you inform me of this possibility? Will you offer a remedy for me so that I may live one day with manageable pain? We admit we need to be better educated in what can happen with escalating doses and medication interactions. THAT is what the physician should be giving us when we are on opioid or any medication therapy. If they cannot provide that information for us, then they need to make appropriate referrals.

Harmony and Hope, Celeste

Written by Celeste Cooper, RN, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (co-author, Jeff Miller, PhD).

Hope for ME/CFS- Possible Biological Diagnostic Marker

2011-02-24T07:43:00.000-08:00

February 24, 2011

Dear Dr. Schutzer

Thank you to you and your team of scientists for this most important research. I am certain you understand the impact this will have on the ME/CFS community, but I want you to know you have my sincerest personal gratitude for all that this research will mean to myself and so many.

As an author, I also want to thank you and the editor, Howard Gendelman at PLos One for allowing open access, so that I may share this across my network.

Sincerely,

Celeste Cooper, author,
"Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection" (co-author, Jeff Miller, PhD)
website: www.TheseThree.com
Blog: http://fmcfstriggerpoints.blogspot.com/
Facebook Page: http://www.facebook.com/#!/pages/Integrative-Therapies-for-Fibromyalgia/345295878606

*This note to the lead author was sent in response to the following “breaking news.”

Research Breaks Chronic Fatigue Sterotypes, reported by Katie Couric on CBS news.
http://www.cbsnews.com/stories/2011/02/23/eveningnews/main20035610.shtml

The Promise of Proteome Analysis of the PLoS ONE paper by the CFIDS Assoc of America. These markers found in CFS patients’ cerebral spinal fluid could show promise as a biological diagnostic. See the full CAA article on the study Distinct cerebrospinal fluid proteomes differentiate post-treatment Lyme disease from chronic fatigue syndrome, Schutzer et. Al, 2011.

http://www.cfids.org/research/proteome-analysis.pdf

Abstract at Plos One, open access

Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome

Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, Adkins NJ, Camp DG, Holland BK, Bergquist J, Coyle PK, Smith RD, Fallon BA, Natelson BH. (2011) Distinct cerebrospinal fluid proteomes differentiate post-treatment Lyme disease from chronic fatigue syndrome. PLoS ONE 6(2): e17287. doi:10.1371/journal.pone.0017287

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

Citation: Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, et al. (2011) Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome. PLoS ONE 6(2): e17287. doi:10.1371/journal.pone.0017287

Editor: Howard Gendelman, University of Nebraska, United States of America

Received: November 29, 2010; Accepted: January 26, 2011; Published: February 23, 2011
Copyright: © 2011 Schutzer et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Funding: National Institutes of Health, through NIAID (grant AI088765), NIDA (grant DA021071), NINDS (grant NS38636), the National Center for Research Resources (RR018522), the Swedish Research Council (621-2008-3592), Uppsala Berzelii Technology Center for Neurodiagnostics, SciLifeLab-Uppsala, Time for Lyme, Lyme Disease Association, and the Tami Fund for support of portions of the research. Pacific Northwest National Laboratory units are located in the Environmental Molecular Sciences Laboratory, a national scientific user facility, sponsored by the Department of Energy (DOE), operated by Battelle Memorial Institute for the DOE under Contract DE-AC05-76RL0 1830. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

* E-mail: schutzer@umdnj.edu

# These authors contributed equally to this work.

Thyroid Autoimmunity and Fibromyalgia - Letter to the author

2011-01-26T12:47:00.000-08:00

RE:

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. “Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?” Rheumatology International, Nov 18, 2010., by Division of Rheumatology, Department of Internal Medicine, University of Pisa, Pisa, Italy.

Laura Bazzichi, Alessandra Rossi, Tiziana Giuliano, Francesca De Feo, Camillo Giacomelli, Arianna Consensi, Antonio Ciapparelli, Giorgio Consoli, Liliana Dell’Osso and Stefano Bombardieri. “Association between thyroid autoimmunity and fibromyalgic disease severity .” Clinical Rheumatology Volume 26, Number 12, 2115-2120, DOI: 10.1007/s10067-007-0636-8

January 25, 2010

Dear Dr. Laura Bazzichi,

I want to thank you and your colleagues for studying the association of autoimmune problems in fibromyalgia.

Because of the life altering fatigue as a fibromyalgia patient, I was diagnosed with chronic fatigue syndrome. Several years later my TSH dropped for several months in a row. While that would normally indicate hyperthyroidism, it was no surprise to me the scan and uptake indicated a thyroid of severely low function. It is the thoughts of my mentor, Devin Starlanyl, and mine too, that in face of a dysfunctional HPA Axis, one may not see the usual abnormal values when assessing thyroid function. Eventually, I did get the proper test and I was positive for antibodies found in Hashimoto’s Thyroiditis. I feel certain there is a difference in Hashimoto's in fibromyalgia patients and may be under-diagnosed. Routine lab values we have come to rely upon may not reflect actual thyroid status in the fibromyalgia patient. It might explain the fatigue associated in some subgroups and lead to confusion of a dual fibromyalgia/chronic fatigue syndrome, now referred to as ME/CFS, diagnosis.

I am a registered nurse, author and have studied much literature for our book. I believe your research is of extreme value. Presently, I advocate for the assessment of myofascial trigger points in ALL fibromyalgia patients, and restless leg syndrome, since newer research suggests their presence. (A copy of my original correspondence, http://fmcfstriggerpoints.blogspot.com/2010_10_01_archive.html). The new proposed criteria, while addressing the centralization of fibromyalgia, exclude this assessment. Certainly, an underlying autoimmune disorder might explain why myofascial trigger points in fibromyalgia resist the usual treatments, and it might explain why trigger points are easily activated in the fibromyalgia patient.

Thank you again for all of your hard work, and please thank your associates for me.

Sincerely, Celeste Cooper, retired RN, author, past educator and author of CEUs for MO State Board of Nursing
Website: www.TheseThree.com

Cc:

American College of Rheumatology % Amy Miller
The American Nurses Association, Editor
Robert Bennett,MD, FRCP
Richard W. Clark, NIAMS Office of Communications and Public Liaison
Daniel J Clauw, MD
Shari Ferbert, Advocates for Fibromyalgia Funding, Treatment, Education, & Research
Fibromyalgia Coalition International,
Mary Ann Fitzcharles, MD (Canada)
Robert Gerwin, MD, FAAN
Donald L Goldenberg, MD
Alan Gurwitt, President Massachusetts CFMDS/ME & FM Ass.org
Cheryl Herrington, Fibro and Friends, Kansas City
Robert S Katz, MD
Phillip Mease, MD
National Fibromyalgia Association
National Fibromyalgia Research Association
National Fibromyalgia Partnership, Inc.
I Jon Russell,MD, PhD
Anthony S Russell, MD (Canada)
Marly Silverman, P.A.N.D.O.R.A (Patient Alliance for Neuroendocrineimmune Disorders Org for Researach and Advocacy)
Devin Starlanyl, Author, Researcher
Rocky Mountain CFS/ME & FM Association
Roland Staud, MD University of Florida, Gainsville,
Kristin Thorson, American Fibromyalgia Syndrome Assoc. Fibromyalgia Network
Muhammad B. Yunus, MD
John B Winfield, MD
Frederick Wolfe, MD

The Benefits of Being Sick

2011-01-23T19:00:00.000-08:00

“A successful person is one who can lay a firm foundation
with the bricks that others throw at him or her.”~David Brinkley

I believe that for every negative there is a positive, that for every up there is a down, that without the existence of these phenomena, life would be plain boring. Not that being bored doesn’t have its rewards too. Being bored, I asked myself today….

What are my benefits to being sick?

• Support
• New friends
• New way of looking at illness
• Embracing alternatives(meditation, visualization, prayer, yoga, or tai’ chi)
• Getting to really know myself
• Thinking more positive
• The opportunity to blog
• Identifying stress that might otherwise be overlooked
• Achieve a higher level of awareness for people and things
• Learning the importance of beginning each day with an affirmation
• Truly finding “joy in the joy of others”

Thank you my friends for being sick with me, and to those who aren’t sick but stand by me never the less, I appreciate you.

Harmony and Hope, Celeste

From Lotus Guide: Directory for Healthy Living

2011-01-18T06:48:00.000-08:00

For many diseases in our world, we are finally learning the treatments using only allopathic or only homeopathic remedies are seldom the best approach in and of themselves. Much of the confusion has come from the polarized arguments of both sides attempting to defend their points of view, but like most truths the answers are often found in the middle ground, hence “integrative medicine.” I found this book, at 448 pages, to be very comprehensive and I highly recommend it for anyone searching for a balanced approach for the treatment of these diseases.

Dhara Lemos, Lotus Guide

Table of contents at my website: http://www.thesethree.com/fibromyalgia/fibromyalgia-book-content.php

Available at:

Inner Traditions, Bear & Company
http://store.innertraditions.com/Product.jmdx;jsessionid=84DFDF90E93A65CE4B1D02D54D979C9E?action=displayDetail&id=3723&searchString=978-1-59477-323-5

Web Med Books
http://webmedbooks.com/content/productdetail.aspx/upc=72f1e412-f978-4baa-9c6b-b20668bf2e77/id=0/sid=d2055222-71a6-4306-bccf-59ed970f712f/

Amazon.com
http://www.amazon.com/Integrative-Therapies-Fibromyalgia-Syndrome-Myofascial/dp/1594773238

Barnes & Noble
http://search.barnesandnoble.com/Integrative-Therapies-for-Fibromyalgia-Chronic-Fatigue-Syndrome-and-Myofascial-Pain/Celeste-Cooper/e/9781594773235/

Booktopia
http://www.booktopia.com.au/integrative-therapies-for-fibromyalgia-chronic-fatigue-synd/prod9781594773235.html;jsessionid=B1F2620E681A5395F93205DDAD561177

Amazon UK
http://www.amazon.co.uk/Integrative-Therapies-Fibromyalgia-Syndrome-Myofascial/dp/1594773238/ref=sr_1_1?ie=UTF8&s=books&qid=1267906880&sr=1-1

Amazon Canada
http://www.amazon.ca/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=Integrative+Therapies+for+Fibromyalgia%2C+chronic+fatigue&x=23&y=18

Amazon India (free shipping)
http://www.flipkart.com/integrative-therapies-fibromyalgia-chronic-fatigue-book-1594773238

Australian Amazon Associate (note: you will need to type in the book title)
http://danny.oz.au/books/amazon.html

Alibris Books
http://www.alibris.com/search/books/qwork/11830443/used/Integrative%20Therapies%20for%20Fibromyalgia,%20Chronic%20Fatigue%20Syndrome,%20and%20Myofascial%20Pain%3A%20The%20Mind-Body%20Connection

Understading Migraine and the Role of Myofascial Trigger Points

2011-01-09T08:59:00.000-08:00

Migraine headaches co-exist in both fibromyalgia (FM) and chronic fatigue syndrome (CFID), and can be a great factor in decreasing our pain threshold. It is like every nerve ending we have is fresh, raw and exposed. One more insult has us ready to explode.

Though we still don’t know for sure what causes migraine, we are learning. Cervicogenic migraine is a migraine attack that is perpetuated or preceded by neck pain. http://www.jaoa.org/cgi/content/full/105/4_suppl/16S For me, and I suspect many others, I can feel the golf ball starting to form on the right side of my neck at the base of my skull, and I can feel little pea size or smaller trigger points even up my scalp. (I do have significant cervical disease, but this is different, it is myofascial, in the muscle). Before long, a whole cascade of events begins and the once latent trigger points (those that can be felt but aren’t painful until pressure is applied) in my face develop into full blown active TrPs, ones that hurt and radiate pain seemingly without warning without even touching them. I can feel them with my fingers and when I apply pressure, this helps if I can get them to release. If treatment is successful, you can feel them release under your finger, and sometime can feel the tell tale local twitch response. Treating all of these TrPs can help with the attack. It is when I neglect treating them before this point that I am more likely to have this migraine, and the greater the neglect, usually the more intense the headache.

Research now indicates that tension type headaches can certainly be the result of myofasical trigger points. See the following study and the comment by Devin Starlanyl, author and pioneer on understanding the centralization of FM and the peripheral input from myofascial trigger points

Fernandez-de-las-Penas C. 2010. New evidence for trigger point involvement in tension-type headaches. J Musculoskel Pain. 18(4):354-360. “Tension-type headache (TTH) is the most common form of headache and its chronic form (chronic tension-type headache (CTTH)) is one of the most neglected and difficult headaches to treat. TTH is an overarching syndrome of ‘featureless’ headaches characterized by nothing but pain in the head.The term ‘tension-type’ has been chosen by the International Headache Society (ICHD-II) to offer a new heading underlining the uncertain pathogenesis, but indicating that some form of muscle tension may play a role.Hyperalgesic and allodynic responses support the role of both peripheral and central mechanisms in the development of the clinical picture of CTTH. In fact, it is suggested that central sensitization, a reduction in inhibitory pain mechanisms, and peripheral sensitization of muscle nociceptors are mechanisms involved in perceived pain in CTTH.Subjects who develop TTH have showed normal tenderness scores and pressure pain threshold levels before the beginning of the symptoms, which suggests that the mechanical hypersensitivity is rather a consequence than a risk factor for the development of TTH.” “Previous studies have found that TTH patients described their head pain as pressing, tightening, or soreness. Dull and tight heaviness are also pain quality features of TTH attacks. These pain features resemble the descriptions of clinically referred pain elicited by TrPs as described by Simons et al.” “Recent clinical studies have clearly demonstrated the relevance of active TrPs in CTTH. In fact, recent studies have described the referred pain elicited from two extra-ocular muscles, i.e., superior oblique and lateral rectus in patients with CTTH.” [DJS] http://homepages.sover.net/~devstar/doctor_pages.htm

A myofascial trigger point (TrP) is a self-sustaining, irritable area in the
muscle that can be felt as a nodule in a taut band. This irritated spot causes
the muscle to gradually shorten, interfering with the motion function of the
muscle and causing weakness and pain.” (Book excerpt)

Migraines alter my life, my ability to think rationally, and breakdown my defenses. My migraines always start behind my right eye, whether they start from weather changes, an oops with my diet, stress, or my myofascial TrP disease (which scientists now believe all fibromyalgia patients may have in addition to the body-wide centrally mediated tenderness) they are still intense. Usually, when my migraines switch to the left, I know it is on its way out. Rarely, but when the attack begins on the left, it isn’t as severe, nor does it last as long. Most of my refractory migraines are cervicogenic in nature, and I believe that is because of the number of neglected trigger points and the connection with fibromyalgia. This peripheral pain impulse to my brain, keeps it in perpetual wind-up, not allowing it to function as it should to send out natural endorphins and chemicals to counteract the original upset.

Migraine perpetuators related to myofascial trigger points

Bruxism is a fancy term for grinding teeth. This condition can aggravate facial trigger points, interfere with restorative sleep, cause teeth erosion, and, among other things, contribute to migraines. If you catch yourself grinding your teeth during the day, you most likely grind at night too, and according to my dentist, bruxism in sleep is four times more forceful. Is it any wonder that myofascial trigger points develop? Assistive devices, such as a nighttime mouth guard, can inhibit some of the pain associated with the disorder. Proper alignment, may abate the development of TMJ/TMD, but the force of bruxism can be a great contributor to the development and recurrence of TrPs in the face and jaw.

Temporomandibular dysfunction (TMD/TMJ), occurs when your chewing muscles are uncoordinated. This puts apposing muscles under undue stress and increases the occurrence of myofascial TrPs. Temporomandibular dysfunction is often associated with chronic muscular headaches and craniofacial pain. Pain can also extend to the ears, neck, and shoulders. Some people experience clicking and grinding noises during movement of the jaw, this limitation could be related to untreated or undertreated myofascial trigger points and pain that occurs anywhere there is muscle, including inside the mouth.

Poor posture and injury can also aggravate the neck and surrounding/supporting muscles, and trigger points in the neck can refer pain to the head and other places. (There are other topics here on my blog that explain how trigger points develop and cause pain and dysfunction).

Skeletal anomalies as the result of injury, surgery, spinal degeneration, or birth defect can put strain on opposing muscles and increase incidence of myofascial trigger points.

Treatment

First find the TrP in the taut band of muscle. It may not be easy to do initially, it takes practice. If you can find a good myofascial therapist to help you, such as a chiropractor or physical therapist that does active release therapy (ART), http://www.activerelease.com/ or a myofascial trigger point therapist, http://www.myofascialtherapy.org/ to help you, and self treatment in between, you may be able to lessen your headache frequency or intensity if they are cervicogenic. With a myofascial tool or your fingers apply pressure and back off to about 70-80%, hold the pressure for about 30-60 seconds. You may feel the TrP release. Some are very resistant and may take several treatments. Also remember that the TrP you are treating may NOT be the primary TrP causing the development of a secondary or satellite TrP. I hope you will pick up a good book on self treatment of myofascial trigger points. My favorite is Clair Davies (Books are listed below).

Research on Botox (trademark) for migraine relief was promising, but the jury is still out on that one.

Wishing you all a migraine free day, lamb hugs, Celeste

Helpful links for understanding migraine
http://www.achenet.org/
http://www.webmd.com/migraines-headaches/news-features
http://headaches.about.com/od/internationalorgs/International_Headache_and_Migraine_Support_and_Advocacy.htm

Book Resouroces:
• Celeste Cooper, Integrative Therapies for Fibromyalgia, Chronic Fatigue
Syndrome and Myofascial Pain
• Devin Starlanyl & Mary Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome
• Clair Davies, The Trigger Point Therapy Workbook
• Valarie DeLaune, Trigger Point Therapy for Headaches & Migraines
• Donna Finando, Trigger Point Self-Care Manual
• Hal Blatman, Art of Body Maintenance: The Winner’s Guide to Pain Relief

Other research:

Gerwin RD. Fibromyalgia Tender Points at Examination Sites Specified by the American College of Rheumatology Criteria Are Almost Universally Myofascial Trigger Points. Curr Pain Headache Rep. 2010 Oct 27. [Epub ahead of print]
Department of Neurology, Johns Hopkins University, Baltimore, MD, 21287, USA

Ge HY. Prevalence of myofascial trigger points in fibromyalgia: the overlap of two common problems. Curr Pain Headache Rep. 2010 Oct;14(5):339-45. Laboratory for Musculoskeletal Pain and Motor Control, Center for Sensory-Motor Interaction (SMI), Department of Health Science and Technology, Aalborg University, Fredrik Bajersvej 7-D3, Aalborg, DK-9220, Denmark.

Saracco MG, Valfrè W, Cavallini M, Aguggia M. Greater occipital nerve block in chronic migraine. Neurol Sci. 2010 Jun;31 Suppl 1:S179-80.
Neurological Department, ASL AT-Asti, Ospedale Cardinal Massaia, Via Conte Verde 125, Asti, Italy

Delstanche S, Schoenen J. Botulinum toxin for the treatment of headache: a promising path on a "dead end road"? Acta Neurol Belg. 2010 Sep;110(3):221-9.
Headache Research Unit, Department of Neurology and GIGA-Neurosciences, Liège University.

A better understanding of Piriformis Syndrome.

2011-01-06T11:47:00.000-08:00

Book Excerpt (copyrighted)

Trigger points can mimic every symptom of degenerative disc disease. If your physician has ruled out degenerative disc disease, or you do not respond to the usual treatments for the disease, please consider the presence of untreated TrPs. Trigger points occurring in muscles—intervertebrals; quadratus lumborum; piriformis; or gluteus maximus, medius, and minimus—could be the culprit. © (Cooper and Miller, pg. 87)

The piriformis is a very small, deep muscle that extends from the side of the sacrum (lowest backbone, tailbone) to the top of the thighbone at the hip joint, passing over the sciatic nerve. When a short or tight piriformis is stretched, it can compress and irritate the sciatic nerve, causing the pain of sciatica. Referred pain from the piriformis is felt in the sacrum, buttocks, and hip. A tight piriformis muscle can also put pressure on the pudendal nerve and cause pain in the groin, genitals, or rectum. In severe cases, piriformis syndrome could be responsible for buttock atrophy. The pain can cause altered gait and guarding, which can cause development of secondary musculoskeletal difficulties. Treatment of piriformis syndrome calls for releasing the entrapped sciatic nerve. I have found myofascial release and specific TrP treatments to be beneficial.(c) (Cooper and Miller, pg 103-104.)

Devin Starlanyl, http://homepages.sover.net/~devstar/myopain.htm show cases 2010 research:

Aydemir K, Duman I, Tugcu I et al. 2010. Piriformis syndrome presenting with foot drop diagnosed with magnetic resonance imaging: a case report. J Musculoskel Pain. 18(3).261-264. Abstact at:
http://www.ingentaconnect.com/content/apl/mup/2010/00000018/00000003/art00009?crawler=true

Comments from my mentor, friend and pioneer in understanding FM and the role of myofascial trigger points Devin Starlanyl.

“Piriformis syndrome can cause foot drop. Magnetic resonance imaging can help earlier diagnosis and treatment.” Piriformis syndrome is a description, not a diagnoses. The authors did not note that myofascial TrPs are the most common cause of this condition, and can cause foot drop as noted in Travell and Simons Myofascial Pain and Dysfunction: The Trigger Point Manual, Vol II. Trigger points were not mentioned, although the authors noted the palpable mass that responded to steroid injection into the mass, resulting in resolution of the syndrome. It would have been interesting to see if the “mass” responded to TrP injection of local anesthetic. Steroids are undesirable and unhelpful in most TrP injections. DJS

I hope you found this information helpful.

Harmony and Hope, Celeste

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper and Jeff Miller, Vermont: Healing Arts Press, 2010.

Fibromyalgia & Chronic Myofascial Pain: A Survival Manual, 2nd ed., by Devin J. Starlanyl, M.D., and Mary Ellen Copeland, M.S., M.A. Oakland, Calif.: New
Harbinger Publications, Inc., 2001.

Myofascial Pain and Dysfunction: The Trigger Point Manual by David Simons, Janet Travell, and Lois Simons, 2nd ed. Philadelphia: Lippincott Williams and Wilkins,
1999.

January - A good time to organize your medical records

2011-01-05T07:39:00.000-08:00

As we begin the new year, and with nearly all doctors being digital ready, the time is right for organizing your medical records.

A good physician will appreciate your involvement and by being organized you can save them time, and relate your symptoms more readily and effectively, making your visits more productive. Our publisher has been so kind to allow you to photocopy the useful tools to document your symptoms, needs, and track progress and setback, hopefully identifying measures that either help or hinder your pain and fatigue.

Please pay particular attention to the Useful Tools and the end of each chapter in the book's contents. Each chapter builds on the previous so you can gather information as you go. Harmony and Hope, Celeste.

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection

Contents
Foreword by Devin J. Starlanyl ix
Preface xi
Introduction 1

1 Fibromyalgia Pain, Chronic Fatigue Immunodysf unction, and Chronic
Myofascial Pain from Trigger Points 3

All about Fibromyalgia 5
Summary Exercise: FM 2Chronic Fatigue Immunodysfunction—The Muster to Master 27
Summary Exercise: CFID 38
Chronic Myofascial Pain—Nerve to Muscle 40
Summary Exercise: CMP 56

Chapter Summary:
FM/CMP–FM/CFID—Is It a Double Cross? 58
Glossary of Terms Introduced in Chapter 1 that Describe Pain 63

2 Communicating Your Health Care Needs 65

Relating Your Symptoms and Health History 66
Identifying Aggravating and Alleviating Factors 73
Coexisting Conditions 75
Communicating with Your Physician and Other Health Care Providers 113

Summary Exercise: Clear Expressions 122

Useful Tools for Communicating with Health Care Providers 126
Medication Log 127
Symptom Inventory Sheet 128
Anatomical Diagram of Pain 130
Health History Log 131

3 Dialogues Within and Without 132

Journal Writing: An Internal Dialogue 133
Soliciting the Support You Need 140
Sample Letter Soliciting Support 144
Relationships: Having Them, Keeping Them, and Knowing
When to Let Them Go 146
Advocacy—A Constructive Way to Vent 151

Summary Exercise: Reaction to Interaction 153

Useful Tools for Inner and Outer Self-expression 156
A Baker’s Dozen: Thirteen Tips for Expressing Your Feelings
through Poetry 157
Interactive Pain/Energy Meter 159
It Takes Two to Tango: Rules for Possibly the Most Important Date in
Your Relationship 160
Sample Advocacy Letter 161

4 My Body Is Matter and It Matters 162

Understanding and Treating Pain 163
Managing Your Diet 190
Exercise—Use It or Lose It 198
Bodywork—Toiling over the Anatomy 213
Medical Specialists and Therapists 219
Health and Functionality Therapists 223
Chapter Conclusion 236

Summary Exercise: Exercising Your Options 237

Useful Tools for a Healthy Lifestyle 240
Diet Assessment Guide 241
Stretches for Every Part of Your Body 243

5 The Power of Mind, Body, and Spirit 252

Depression—Overcoming the Doldrums 253
Spirituality 265
Accepting What Is 271
Other Paths 277

Chapter Conclusion 287

Summary Exercise: Expanding Your Options 289

Useful Tools for Connecting with Your Spiritual Center 291
Breathing Meditation for People with FM, CFID, and CMP 292
Guided Meditation for Healing 292
New Thoughts on Insomnia 293

6 Dealing with Circuit Overload 294

Brain Fog—Symptoms of Blowout before a Power Failure 295
Time Management—An Exercise in Energy Conservation 302
Crisis Management—Dealing with Major Life Events 307

Chapter Conclusion 309

Summary Exercise: Unloading the Gray Matter 309

7 Approaching the System Systematically 312

The ADA and the EEOC 312
Social Security Disability Determination 318
Patient Rights 336
Miscellaneous Programs and Help 344
Confidentiality and HIPAA 352

Chapter Conclusion 356

Useful Tools for Navigating the Health Care System 357
Interaction Worksheet for Important Calls and Meetings 358
Treating Health Care Provider Log 359
Chronological Health Record 360
Table for Determining Disability Status for Those Limited to
Sedentary Work 361
Table for Determining Disability Status for Those Capable of Light
Physical Work 364

Epilogue 366

Resources for Maximizing Health Care, Relationships, and
Emotional Well-being 369
Glossary of Acronyms 391
Notes 395
Index 424

2011-01-03T09:31:00.000-08:00

Fatigue challenges us,
Action defines us.
Collaboration empowers us,
Tenacity unveils us
Spirit enlightens us, and

Pain unites “The Advocate”

Written by Celeste Cooper, RN, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (co-author, Jeff Miller, PhD)

2010-12-27T08:57:00.000-08:00

My beckoning oak Desk succumbs to work in flight
The warm quivering Lamp seems ashamed.
Children chattering words of delight
My humming computer, thoughts have now claimed.

The circling of words difficult to order
For my fog filled mind can’t lift off as birds.
Absent are senses of pleasurable odors
From paper of wood impregnated with words.

Silent words glide fingers across letters,
The crest of a keyboard looking for my sun to shine,
Responding to unabashed creation for better,
A pyramid of spirituality that is only mine.

All these unashamed tools of my trade,
Laying in wait at the command of my pen,
To gather oak, mind, wood, and words to be made
As gratitude for the genius that created them.

The true beacon that shines into the creative globe,
Is this the genius in me or passing from others?
It matters not from which we shine, only that we do.

Celeste Cooper, author

SIBO, Yeast & Leaky Gut and YOU!

2010-12-16T09:26:00.000-08:00

SIBO is an acronym for small intestinal bacterial overgrowth, sometimes also referred to as SBBO, small bowel bacterial overgrowth. The small bowel is about 20 feet long, connects the stomach to the colon (large bowel/intestine) and is responsible for secreting a hormone (secretin) that stimulates the pancreas to produce digestive enzymes. Digestion fulfills the bowel’s purpose, breaking down food into nutrients and eliminating waste or unwanted products

The small bowel has fewer bacteria than the large bowel, but none the less, it has bacteria that should be there. However, when these bacteria have outlived their stay/purpose, the bacteria become unfriendly, rather like fermenting.

SIBO can result from such things as a partial bowel obstruction, adhesions, bowel disease, such as diverticulosis or other anatomical malformations, slow motility either from medications or damage to the intestinal nerve endings from disease. This causes the symptoms that are often confused with irritable bowel syndrome. Certainly people with IBS can also have SIBO, and it seems may be at a higher risk, therefore, SIBO should be considered in FM and CFID (ME/CFS) patients with IBS. Failure to treat SIBO can cause long term problems.

It is diagnosed by a hydrogen breath test and other more invasive techniques and there are antibiotics specific to the GI tract, which might decrease the chance for yeast which can also overgrow in the bowel.

*The following is an excerpt from the book and is protected under copyright laws. Helpful links have been inserted into the material to provide more information.

Candidiasis © Yeast
Intestinal yeast has been linked to small bowel bacterial overgrowth (SIBO) causing excessive gas, bloating, abdominal pain, and altered bowel habits.(1)

Yeast infections can occur with FM and overgrowth may increase the symptoms of bloating, brain fog, abdominal complaints, and muscle aches associated with FM and CMP. It can also exacerbate the usual symptoms of FM and CMP.(2) It has been identified as a possible trigger to CFID, and some association has been made with chronic candidiasis syndrome.(3) Yeast infections should always be treated, but you can also exercise preventive lifestyle choices.

To help prevent vaginal yeast, avoid vaginal douching, keep the area dry, and use a blow dryer after showering. Wear 100 percent cotton underwear dried on high heat, and avoid nylon panty hose. If you are a carbo junkie, change your diet. There are other reasons for this that will be discussed later, but understand that excessive sugar and carbohydrate intake have been linked to a higher risk of developing yeast overgrowth. Insulin resistance and some medications may perpetuate yeast or leaky gut. (4)

[Leaky Gut, LGS, causes body-wide symptoms because of holes in the intestinal barrier. Due to this breakdown, the bowel does not function normally and does not filter out some harmful substances, such as bacteria, toxic waste products, food additives, infectious agents, and inflammatory substances…. with this disruption to normal bowel function, the immune system leaves the gut open to infections and yeast overgrowth, causing not only gastrointestinal symptoms like bloating, gas, diarrhea, and abdominal pain, but other feelings of ill health as well. Cooper & Miller, pg 97-98]

Antibiotic use should be avoided when possible, as antibiotics are indiscriminate and kill off our “protective” flora along with offending microorganisms. Of course, there are times when their use is needed. Just be aware that when you must take antibiotics, candidiasis may occur and need to be treated. Talk to your doctors if you are prone to yeast infection with antibiotic use, so that you can get appropriate treatment. There are specific tests to check for candidiasis-initiated responses by the body, called IgG, IgA, and IgM antibodies.(5)

(end of excerpts)

In the case of SIBO, antibiotics are necessary because of the “bacterial” Depending on the underlying factors for overgrowth, some patients will have to be on antibiotics long term,. In this case there may be rest periods between antibiotic therapies. Following is a link, Medcinenet.com, which discusses a comprehensive approach to treatment.

http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/page6.htm

I personally have had good results with Xifaxan, but that doesn’t mean everyone will. It depends on the bacteria and follow up is suggested. Probiotics such as lactobacilli and bifidobacteria are suggested for all conditions. It is believed they may inhibit the development of bad bacteria and boost immunity.

If you have these symptoms, I hope you will approach your gastroenterologist (GI doctor). This condition is quite painful and when coupled with irritable bowel syndrome the pain, loss of sleep and comorbid symptoms can be overwhelming. If SIBO or Leaky Gut are at the root of your disorder, you may find treatment that minimizes your symptoms and increases your quality of life

Harmony and Hope, Celeste.

Resources:

(1) GI Problems—Is Bacteria to Blame? Fibromyalgia Network Newsletter (July
2000): 3.

(2) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival
Manual, 48.

(3) R. E. Cater, 2nd, “Chronic intestinal candidiasis as a possible etiological factor in the chronic fatigue syndrome,” Medical Hypotheses 44, no. 6 (June 1995):
507–15.

(4) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival
Manual, 296.

(5) Cooper & Miller. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. 83.

Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS), and Chronic Myofascial Pain (CMP) Trigger Points

Does 2+2=3? The tender point model of fibromyalgia.

Sleep oh sleep, where art thou? Could your fibromyalgia medications be causing insomnia?

Jack Backwards, Fibromyalgia, the stress response what you can do about it.

Chest wall pain mimic costochondritis in fibromyalgia: Successful treatment

December '11 Blogs for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain

In a word – What we know about terms and fibromyalgia

Ironic, the P in Substance P: The Relationship of Pain in Fibromyalgia

History the weapon for our arsenal in understanding fibromyalgia.

Ups and Downs; unpredictability of FM and CFID. How can I avoid a flare?

Nerve to Muscle and the Role in Fibromyalgia

Fibromyalgia, Dismissed, Misdiagnosed and Poorly Understood.

Ups and Downs; unpredictability of FM and ME/CFS. How can I avoid a flare during the holidays?

Fibromyalgia pleasing or unpleasing immune response, you decide.

Fibromyalgia and Chronic pain, Consistent Cousins, Shared Machinery

Fibromyalgia the orphan, are our adoptive parents the right ones?

Only one nerve left -The use of TENs units in FM

Taming the Lion Inside, anger and chronic illness

Cravings of and Staving off the Yeast Beast: Is diet assessment in order?

Arresting the tidal flow: Pelvic dysfunction in fibromyalgia.

Snooze News - The conundrum of sleep deprivation

Weird or Wonderful Comrades: Neurontin and pain in fibromyalgia and myalgic encephalomyelitis

Aren’t we a motley crew? The diversity of chronic pain and its relationship to fibromyalgia.

Volcanic Activity: What we should know about cellular healing in fibromyalgia and myalgic encephalomyelitis

Legs come to me, be still: Fibromyalgia and Restless Leg Syndrome are they Bed Buddies?

Fatigue: Not all symptoms are attributed to fibromyalgia

Exercise with FM and ME/CFS, claiming your domain.

Should the government be micromanaging physicians and their ability to do their job managing pain?

One Day at a Time: symptoms, age, and FM.

Fibromyalgia is complicated, but are there possible complications?

Where we are headed understanding the differences in FM and ME/CFS

Blood tests for diagnosing FM might be more than a vision

Qi Gong and Biofeedback, tools for helping our bodies deal with FM & ME/CFS

Helping your doctor diagnose fibromyalgia

Fibromyalgia and the Workplace

In with the New, Out with the Old: Fibromyalgia diagnostics

Bats crowding out your belfry, dizziness in FM and CFS/ME

How do I manage fibromyalgia on a daily basis?

Can pregnancy cause fibromyalgia?

Are there alternative treatments for fibromyalgia?

Does someone with fibromyalgia need more exercise?

Can fibromyalgia or CFS/ME cause depression?

How does fibromyalgia affect my musculoskeletal system?

We’re Hunting Wabbits: Labels, Research and Doctors

The Cat's Out of the Bag-ShareCare Expert

Voting on Vivant - Seizing Opportunity

The Untold Story of your Thyroid, FM and CFS/ME

Bespeak or Begrudge: finding and affording the shingles vaccine

My critique of “Diagnosing fibromyalgia: Moving away from tender points”

Points That Need More Than Pondering: Defining Myofascial Trigger Points

Do No Harm – Medication Safety

Thursday May 26th Teleconference on Myofascial Trigger Points

Letter to the President of the United States

THE ADVOCACY PACKAGE

9-1-1 FM Awareness Letter on Proposed Diagnostics in Template Form for Using

THE TREATMENT OF FIBROMYALGIA by Dr. John Whiteside with comments

Letter to Obama Regarding ME/CFS

Fibromyalgia (FM) and Myofascial Pain Syndromes (MPS) by Dr. John Whiteside

Unveiling Myofascial Trigger Points in Fibromyalgia

Chronic Pain Thoughts, Tidbits, and Insight: Response to an article

Hope for ME/CFS- Possible Biological Diagnostic Marker

Thyroid Autoimmunity and Fibromyalgia - Letter to the author

The Benefits of Being Sick

From Lotus Guide: Directory for Healthy Living

Understading Migraine and the Role of Myofascial Trigger Points

A better understanding of Piriformis Syndrome.

January - A good time to organize your medical records

Pain Facts of an Advocate©

Only That We Do©

SIBO, Yeast & Leaky Gut and YOU!