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

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