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Fibromyalgia - A Syndrome of Variations

Posted May 27 2012 4:20pm

Fibromyalgia Syndrome is a complex debilitating health disorder which is characterized primarily by widespread musculoskeletal pain and is often accompanied by a range of other symptoms including fatigue, sleep disturbances, gastrointestinal problems, thyroid dysfunction, headaches, and brain fog. There is historical evidence that this condition has been in existence for hundreds of years but only in the last 25 years has fibromyalgia achieved recognition from the medical community as a distinct disorder.

In 1990 the American College of Rheumatology (ACR) came up with a definition of fibromyalgia which stated that widespread pain should occur on both sides of the body, above and below the waist, and include axial pain (along the spin); and they identified 18 trigger or tender points, of which at least 11 should be painful to pressure. This definition was a good starting point but is not universally accepted today as the understanding of this complex disorder keeps evolving. After a study completed in 2010 the ACR changed their definition of fibromyalgia to identify non-tender point diagnostic criteria including fatigue, waking unrefreshed, and cognitive symptoms, as well as and other somatic symptoms; and it developed a severity scale of symptoms. 

Adding to the confusion over the diagnosis of fibromyalgia is its similarity to other overlapping conditions particularly Chronic Fatigue Syndrome but also Irritable Bowel Syndrome, chronic Lyme disease, allergies, and food and chemical sensitivities. The reality is that each individual with fibromyalgia presents a unique presentation of symptoms based on their particular history. What these individuals have in common is a system that has downregulated in response to a combination of physical stressors for which it can no longer accommodate. These stressors may include impaired breathing, toxic overload, emotional stress, physical trauma, menopause, and infections. For more on this read my post "What Causes Chronic Fatigue and Fibromyalgia Syndromes".  http://fibrofriends.typepad.com/fibro_friends/2010/08/what-causes-chronic-fatigue-and-fibromyalgia-syndromes.html

In the vast number of books and articles on fibromyalgia there are as many theories and recommended treatments as there are variations in the disorder itself. My personal favorite book is Leon Chaitow's "Fibromyalgia Syndrome - A Practitioner's Guide To Treatment" because it presents a comprehensive overview of research, theories and treatments with chapters by different clinicians and therapists. Chaitow maintains a global perspective on the syndrome that is rare. He writes:

"Any attempt to reduce the complexity of FMS is laudable. However, there is a risk that such an attempt at reductionist reclassification may lead to the bigger picture being overlooked. ...many apparent 'causes' are in fact symptoms, evidence of a breakdown in homeostasis or of homeostasis in action."  "Treatment strategies will be based on any unique, idiosyncratic combination of inherited and acquired features that can be identified. Whatever is identified, the bottom line in therapeutic endeavours which aim to enhance health has to be to work with the self-regulating mechanisms of the body, in order to 'lighten' the adaptive load and enhance functional ability to cope with the load, to allow healing and regeneration". [1]

It appears that there are four distinct variations or forms of musculoskeletal pain in persons with fibromyalgia although they are seldom delineated by medical "experts" most likely because many patients have more than one of these forms concurrently. Understanding the particular type of fibromyalgia pain one is suffering from is important if one is to find appropriate treatments.

The first form of fibromyalgia pain is the severe full body pain caused by spine trauma. The pain is described as burning, sharp and aching, is not alleviated by narcotic or opioid medication, and is emotionally very distressing. This type of fibromyalgia is typically triggered by some kind of physical trauma such as an accident or surgery. Dr. Carolyn McMaken has developed an effective treatment protocol using Frequency Specific Microcurrent that has successfully resolved this condition for many individuals. For more information go to:  www.frequencyspecific.com . Chiropractors employing a technique involving frequent neck adjustments called Neuro-Resetting Technique or Neurological Relief Center Technique have also accomplished similar results. 

The second form of fibromyalgia pain occurs when muscles are unable to recover or adequately repair themselves from daily activity resulting in chronic inflammation and pain in the connective tissue or fascia. The pain is described as dull and improves with rest and applications of cold. It is similar to post exercise muscle soreness or "Delayed Onset Muscle Soreness" that occurs in healthy individuals that are strained by over use but in fibromyalgia any repetitive movement is essentially damaging. This is the type of fibromyalgia which I refer to as "fibromyalgia muscle dysfunction" and write about in my post "Fibromyalgia - A perspective on Muscle Dysfunction and Effective Treatments.   http://fibrofriends.typepad.com/fibro_friends/2011/10/f.html    An excellent analysis of this muscle pain is written by Ginevra Liptan, MD in the chapter entitled "Fascia is the Source of Muscle Pain" in her book Figuring Out Fibromyalgia.[2]  Effective therapies are limiting and rotating physical activities, cryotherapy, EMG biofeedback training, female hormone replacement, and various forms of physical therapies including Bowen work and myofascial release. 

The third form of fibromyalgia pain is an all over body achiness accompanied by extreme fatigue. The pain is reminiscent of having the flu, is often episodic, and improves with applications of heat. This is a caused by an overtaxed immune system due to food and chemical allergies, and chronic infections such as Lyme disease and parasites. Effective treatments include identifying and treating chronic infections; identifying and eliminating allergens; and improving the immune system with therapies such as Human Probiotics and the Marshall Protocol. 

The fourth and final form of fibromyalgia pain is referred to as central sensitization or spinal cord hyper-reactivity and is the result of a system that has gotten so stressed and exhausted by any of the previous forms or combinations of forms of fibromyalgia that the entire nervous system goes into a state of chronic sympathetic arousal. People with fibromyalgia can become hyper-reactive to any number of things including noise, light, physical touch, temperature changes, and they develop a chronic agitation of the nerves and corresponding trigger points up and down the entire spine. Effective treatments include using some of the previously discussed therapies appropriate to the individual's condition; and retraining the nervous system  through biofeedback self-regulating skills and neurofeedback which I describe in my post "Biofeedback Therapies for CFS and FMS".  http://fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html 

I suffered from chronic fatigue syndrome for 28 years but was able to live a fairly functional life due to stress management, diet, moderate exercise, meditation, yoga and years of biofeedback and neurofeedback training. At the onset of menopause however my health took a turn for the worse and I developed fibromyalgia muscle dysfunction that made it impossible to continue being active physically. At this lowest point of my life physically I was unable to sleep for more than 20 minutes at a stretch, felt light headed when I stood up, was injuring my muscles doing very low level tasks, had a chronically dry mouth, alternated between feeling hot and cold, had poor digestion, and extreme fatigue. I never developed brain fog or central sensitization which I attribute to years of biofeedback and neurofeedback training and my continuous involvement in music.

One of the big misnomers about fibromyalgia is that exercise is beneficial. Although a certain amount of movement is always good for well being, increasing the demands of the muscles with weight bearing and repetitive activity beyond a person's recovery threshold will result in muscle injury and pain. In every survey I have seen of patients with fibromyalgia the number one helpful thing was rest, not exercise. Another misnomer is that fibromyalgia is caused by not getting adequate sleep particularly in the deep REM stage. It is true that most if not all fibromyalgia patients suffer from insomnia but disordered sleep in my opinion is a symptom of the syndrome not a cause. Unfortunately there are no effective medicines that alleviate the inflammation in the muscle fascia that contributes to disturbed sleep, and pharmaceutical sleep aids become less effective over time and worsen the condition as they further suppress the system. 

Healing from fibromyalgia and chronic fatigue syndromes requires identifying and treating the underlying stressors that lead to the condition; and restoring normal levels of functioning that have down regulated in response those stressors.  My personal recovery thus far is a result of number of cutting edge therapies that are not included in Chaitow's book and most of the literature on these syndromes. Of primary importance to my recovery was Oral Systemic Balance (OSB) which successfully corrected a breathing problem using custom designed oral appliances. (Chaitow attributes breathing problems in fibromyalgia to hyperventilation and bad breathing habits when in fact these problems are primarily structural having to do with the anatomy of the tongue, teeth and mouth).

Improving my breathing with OSB took a huge layer of stress off of my body but was not enough to allow me to fully heal. This is because after 35 years of struggling with chronic fatigue my body was stuck in some significant maladaptive stress patterns. Addressing Wilson's Low Body Temperature Syndrome, a condition of thyroid dysfunction triggered by long term stress, by taking for a period of time incremental amounts of T3 allowed my body temperature to return to normal and resolved a particular kind of fatigue that I struggled with for over 30 years. LENS neurofeedback helped heal post traumatic brain damage and emotional trauma from living with chronic illness. My health has also benefited significantly from taking female hormone replacement therapy. These and other effective therapies are outlined  with links to more in depth posts and websites in my opening post "Chronic Fatigue & Fibromyalgia Syndromes -Strategies for Healing"   http://fibrofriends.typepad.com/fibro_friends/2011/05/chro.html  

Although I no longer suffer from fatigue or any of the other extreme symptoms I described as occurring at the lowest point in my health history, I still have fibromyalgia muscle dysfunction. The threshold of activities I can "get away with" has increased so that I live a productive life, but I still cannot exercise, practice the piano or garden on a daily basis. I also still have disturbed sleep which corresponds to the amount of activity I do and inflammation in my muscle fascia; impaired digestion; and reactions to stimulants of all kinds. I suspect this is because parts of my physiology are still stuck in low gear and are not producing adequate amounts of enzymes, hormones and amino acids to function normally. I have learned through trial by error that supplementing with these things does not improve my situation because after a short period of time they become ineffective. This is most likely due to my body readjusting to the supplements in order to maintain the low levels it has adapted to. At present I am exploring a couple of new therapies that may reverse my remaining issues. Look forward to upcoming posts to see if I'm successful!

 ____________________________________________________________________

[1] Chaitow, Leon. Fibromyalgia Syndrome A Practitioners Guide. Churchill Livingston Elsevier. 2010.      

[2] Liptan, Ginevra. Figuring Out Fibromyalgia. Visceral Books, LLC. 2011.


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