Friday, December 30, 2011

In a word – What we know about terms and fibromyalgia

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.

Monday, December 19, 2011

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

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.

Monday, December 12, 2011

History the weapon for our arsenal in understanding fibromyalgia.

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

Wednesday, December 7, 2011

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

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

Monday, December 5, 2011

Nerve to Muscle and the Role in Fibromyalgia

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.

Monday, November 28, 2011

Fibromyalgia, Dismissed, Misdiagnosed and Poorly Understood.

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.

Monday, November 21, 2011

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

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

Friday, November 11, 2011

Fibromyalgia pleasing or unpleasing immune response, you decide.

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

Tuesday, November 8, 2011

Fibromyalgia and Chronic pain, Consistent Cousins, Shared Machinery

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.

Wednesday, October 26, 2011

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

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

Thursday, October 20, 2011

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

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.

Wednesday, October 19, 2011

Taming the Lion Inside, anger and chronic illness

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

Wednesday, October 12, 2011

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

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).

Wednesday, October 5, 2011

Arresting the tidal flow: Pelvic dysfunction in fibromyalgia.

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

Saturday, October 1, 2011

Snooze News - The conundrum of sleep deprivation

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 poor sleep quality and quantity should be addressed, and all patients with FM and CFS deserve to have a sleep study to evaluate and properly address their problems.

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 the oxygen 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.

Our 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)

~ • ~ • ~ • ~ • ~ • ~
Update as of April 2015

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate
New Website
Celeste’s Website: http://CelesteCooper.com


Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

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

Wednesday, September 28, 2011

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

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.

Wednesday, September 21, 2011

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

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

Friday, September 16, 2011

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

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.

Monday, September 12, 2011

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

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

Tuesday, September 6, 2011

Fatigue: Not all symptoms are attributed to fibromyalgia

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

Thursday, September 1, 2011

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

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



Wednesday, August 31, 2011

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

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

Monday, August 29, 2011

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

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

Thursday, August 25, 2011

Fibromyalgia is complicated, but are there possible complications?

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

Wednesday, August 24, 2011

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

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.

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