Fibromyalgia Syndrome remains a mysterious conglomeration of symptoms for which there is no definitive cause or treatment by the medical profession. The muscle condition characteristic of fibromyalgia is particularly poorly understood. To add to the confusion fibromyalgia patients are often referred to rheumatologists for diagnosis and treatment despite the fact that fibromyalgia is neither an autoimmune disease nor a condition of inflammation. So what exactly is fibromyalgia?
“Fibro” refers to the fibers of the muscle tissue. “Myalgia” means pain in the soft or connective tissue of the muscles; tendons, which attach the muscles to the bones; and ligaments, which attach the bones to other bones. Myalgia is also referred to as “Soft Tissue Rheumatism”. It is most commonly caused by the overuse or stretching of a specific muscle or group of muscles as in tendonitis or carpal tunnel. In the case of fibromyalgia syndrome the condition is systemic occurring on both sides of the body above and below the waist. The muscles in fibromyalgia patients are chronically agitated and over contract when used. In other words fibromyalgia is a condition of hypertoned muscles that do not relax. The result is pain and adhesion in the muscle tissue. When a person with fibromyalgia forces their muscles to work they develop sore points called trigger points. These points are felt as painful lumps or nodules that can be palpated by an experienced physical therapist or physician. A number of doctors who specialize in fibromyalgia believe that the cause of painful trigger points is metastatic calcium produced by chronically contracted muscles which cannot receive proper blood flow. The tissues become hypoxic (less than normal amounts of oxygen in the tissues) and contract further setting the calcium more permanently within the soft tissues. Severely impaired fibromyalgia patients have large lumps of calcium deposits sometimes referred to as scar tissue at their trigger points. Rhematologists have identified 18 specific trigger or tender points that they use to diagnose fibromyalgia. According to The American College of Rheumatology a person should have pain in a least 11 of 18 tender points to be diagnosed with fibromyalgia while other doctors think you can have fewer points. The truth is that there is a lot of variation in the muscle symptoms of fibromyalgia patients and in one patient from time to time as the severity of the condition fluctuates.
One thing that all fibromyalgia patients have in common is that when they push their muscles beyond a certain threshold their condition worsens. The threshold varies from patient to patient and day to day in an individual patient. A severely ill patient will aggravate their muscle condition by trying to perform simple tasks such as walking, climbing stairs or doing light housework. A less severe patient may lead a relatively functional life but their condition is aggravated by more rigorous activities such as exercise or gardening. One of the major misnomers of fibromyalgia is that exercise is beneficial. A certain amount of movement helps with the condition because it increases blood flow to the damaged tissue however increasing the demands of muscles beyond one’s threshold with weight bearing and repetitive activity will result in a relapse in muscle injury and pain. Persons with fibromyalgia refer to a relapse as a “flare” which can aggravate into full body pain lasting several days or weeks. Severely ill fibromyalgia patients are in a flare all the time or as they say “24/7”.
The pain caused by the muscle condition of fibromyalgia also ranges from mild discomfort to severe depending on the individual. It does not respond to anti-inflammatory drugs and is only marginally treatable with narcotic painkillers. Unfortunately many fibromyalgia patients end up on an illusive course of taking increasing amounts of drugs for pain relief and suffering horrible side effects. The only sure way to limit the pain is to limit one’s activities and to give the muscles plenty of rest after exertion. Other palliative measures include cold and heat therapy and very gentle bodywork such as Feldenkrais or Bowen Work. When my fibromyalgia was bad I used ice packs on the muscles I used each day. I also took lots of alternating hot and cold showers. The relief was temporary but sometimes prevented me from suffering a bad flare-up. I also adopted a lifestyle where I constantly rotated my activities, never using any one set of muscles for more than 15 minutes.
Some fibromyalgia patients respond to large doses of magnesium, which relaxes the muscles and counters their tendency to over contract. I have a friend who manages her condition quite well simply taking magnesium supplements. Fibromyalgia patients have also reported a benefit from taking vitamin D and amino acids, see my post "Protein Deficiency" fibrofriends.typepad.com/fibro_friends/2009/01/protein-deficiency-fibromyalgia.html ), which many people are deficient in and can contribute to muscle pain and weakness.
Dr. R. Paul St. Amand promotes the treatment of fibromyalgia with the expectorant guaifenesin commonly found in over the counter cold remedies. St. Amand believes that the retention of calcium in the cells of fibromyalgia is a result of an inability to produce energy or ATP (adenosine triphospate - a biochemical term for cellular energy) and an abnormality in phosphate excretion. His protocol, which involves taking regular doses of guaifenesin and avoiding products that contain salicylates has been helpful for some fibromyalgia patients. For more information go to: www.fibromyalgiatreatment.com. An interesting article by Mark London that thoroughly researches the use of guaifenesin for fibromyalgia can by found athttp://web.mit.edu/london/www/guai.html. According to London’s research guaifenesin acts as a muscle relaxant by depressing transmission of nerve impulses in the central nervous system.
Dr. Samuel Yue, a medical doctor in Minnesota believes that fibromyalgia is caused by a systemic deficit of relaxin hormone or the inability of the body to utilize this hormone. This hormone, which is associated with pregnancy when it is produced in large amounts is necessary to maintain the integrity of collagen and connective tissues of the body. He prescribes the hormone relaxin, which has been helpful for some fibromyalgia patients in releasing sustained muscle contractions and the resolution of their tender points. The hormone is available in a supplement form called “Vitalaxin” developed by Dr. Yue and is available from numerous supplement supply companies.
I have personally tried taking large doses of magnesium and vitamin D, did the guaifenesin protocol for four months and took relaxin hormone both orally and by injection under Dr. Yue’s supervision. Unfortunately I did not experience any change or improvement with these treatments however I do not dismiss testimonials by others who have found them helpful.
There are several flawed theories on the cause of fibromyalgia. One 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 just another symptom of a syndrome that affects many systems of the body. Many individuals suffer from insomnia but do not have fibromyalgia and those fibromyalgia patients who take medications to improve their sleep still suffer from the disorder. Other theories suggest that fibromyalgia is caused by toxins or gastrointestinal inflammation. It is also true that many fibromyalgia patients have gastrointestinal issues and an impaired ability to eliminate toxins (read my post "Detoxification" fibrofriends.typepad.com/fibro_friends/2009/05/detoxification.html) but this is not the cause of the muscle dysfunction in fibromyalgia. Even more bizarre and incredulous is the theory that fibromyalgia sufferers have some kind of impaired or altered perception of pain as if somehow their pain is not real or that bad, they just perceive it to be so. This theory should be soundly debunked and is an insult to anyone suffering from fibromyalgia and skilled physical therapists that can observe the abnormal muscle tissue in painful areas of the disorder.
In 1994 researchers at the University of Texas discovered an elevation in the level of the neurotransmitter Substance P in the spinal fluid of patients suffering from FMS. Substance P is a 11-amnio acid neuropeptide that is distributed throughout the peripheral and central nervous systems and is localized in the primary sensory neurons and the neurons intrinsic to the gastrointestinal tract. Researchers at Viral Immune Pathology (www.vipdx.com) have developed a test for cerebral spinal fluid which measures the amount of Substance P in patients and is a reliable diagnostic marker to differentiate between CFS and FMS.
A 2002 study by a team of researchers at Oregon Health and Science University led by Robert Bennett, MD found that persons with fibromylagia have an inability to secrete growth hormone during exercise. They surmised that another hypothalamic hormone – somatostatin – was probably blocking the release of growth hormone. This is another manifestation of a disordered hypothalamic-pituitary-adrenal (HPA) axis found in persons with Chronic Fatigue and Fibromyalgia Syndromes. Treatment with daily Human Growth Hormone injections is expensive but has been reported to improve quality of life and energy level, reduce pain, and improve exercise capacity and muscle strength. For more information on this go to: www.myalgia.com. An inexpensive, safe alternative to HGH injections is a homeopathic HGH spray reported by some to have positive results. Go to:www.drmaxpowers.com.
It is my personal opinion that the muscle condition of fibromyalgia is a symptom of dysfunction of the Central Nervous System resulting from a protective response of the brain to physical stress. In my case this was due to the prolonged stress of living with an obstructive breathing disorder (see my post “Oral Systemic Balance”) that became increasingly difficult to compensate for and eventually lead to a state of neurological exhaustion. The actual tipping point for me was menopause but I had chronic fatigue syndrome for 28 years before developing the muscle dysfunction specific to fibromyalgia. Others develop fibromyalgia after some traumatic event such as a car accident, surgery, childbirth, toxic exposure or physical abuse. When confronted with severe trauma the brain “shuts down” and becomes less flexible and more reactive. Often that dysfunction continues even after the stress or trauma is past. The trick to recovery therefore is to find a means to reset the nervous system.
Dr. Paul Whitcomb whom I have written extensively about in my blog was able to help many fibromyalgia patients at his clinic by doing frequent adjustments to the top vertebrae of the spine, which resulted in dampening the agitated nervous system. For a fortunate few the results were long lasting. For others including myself the relief was temporary. Check my post “Paul Whitcomb – Friend or Foe” fibrofriends.typepad.com/fibro_friends/2008/08/paul-whitcomb---friend-or-foe-1.html . I have since discovered a gentle movement employed by Bowen Work and cranial sacral therapists at the base of the head that calms the nerves to the peripheral muscles, basically accomplishing the same thing that Whitcomb did with a lot less force and without hurting the neck. It would be interesting to see if one performed this movement or hold several times a day if the effects would be longer lasting.
The field of neurofeedback specifically addresses dysfunction of the Central Nervous System and offers a lot of promise for those suffering from fibromyalgia as well as many other chronic disorders. Some people have reported good results from doing programs of EEG biofeedback or neurofeedback training. The patient sits in a comfortable chair with sensors placed on either side of the scalp, which are attached to a computer that picks up brain wave activity. Feedback is produced through visualization on a computer monitor and sound and is monitored by a neurofeedback technician. The patient receives positive feedback when it moves towards a more balanced and flexible pattern. I did over 50 sessions of Zengar neurofeedback training and although I made progress in each session, the improvements did not last for more than several hours. I think this was because my dysfunctional brain patterns were very entrenched and tied to my survival through extraordinarily physical stress.
This past year I learned about an entirely different form of neurofeedback called “Low Energy Neurofeedback Systems or LENS, which has been helpful for people who do not respond to neurofeedback training and achieves results in less time. A LENS session lasts only seconds as opposed to a neurofeedback training session, which typically lasts around 45 minutes. During a LENS a person receives feedback of its own dominant brain wave frequency at a slight offset. The brain recognizes its own pattern and shifts away from it. What is unique about LENS is that the shifts are permanent and the brain reintegrates healing on its own. I am presently doing LENS and have experienced improvements in many symptoms including insomnia and my fibromyalgia muscle condition. For more information go to:www.ochslabs.com.
In the book "The Healing Power of Neurofeedback" by Stephen Larsen there are references to the additional benefits of surface EMG biofeedback training for fibromyalgia patients doing LENS. An electromyograph (EMG) is an instrument that uses surface electrodes to detect muscle contraction using one or more active electrodes that are placed over a target muscle and actively record the muscle tone in microvolts. Paying attention to this feedback one can manipulate and decrease agitated muscle contractions. I found an inexpensive home unit on the Internet manufactured in England by Win Health atwww.win-health.com/neurotrac_simplex.html. I began practicing daily on my own, retraining my muscle tone to decrease and have observed a marked improvement in my muscle function as well as an ability to recover more quickly when I over do it. I am optimistic that through the combined approach of LENS and sEMG my fibromyalgia muscle condition will completely resolve.