Fibromyalgia Syndrome remains a mysterious conglomeration of symptoms for which there is no definitive cause or treatment. 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 not an autoimmune disease. 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 that occur in conditions such as tendinitis 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 not able to recover adequately from everyday exertion. This results in pain, adhesion, and injury in the muscle tissue or fascia. When a person with fibromyalgia forces their muscles to work they develop sore spots called trigger or tender 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 one can have fewer points. The truth is that there is a lot of variation in the 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 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 a person’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 ranges from mild discomfort to severe pain depending on the individual. The pain 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 which have 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, Myofascial Release and Bowen Work. When my fibromyalgia is bad I put ice packs on the muscles I use each day. I also take lots of alternating hot and cold showers. The relief is temporary but is a useful coping tool to manage my pain. I also have adopted a lifestyle where I constantly rotate my activities, never using any one set of muscles for more than 15 minutes.
Some fibromyalgia patients respond to large doses of magnesium, which relax the muscles and counters their tendency to over contract. I have a friend who manages her condition quite well simply taking magnesium supplements. Trans dermal application of magnesium are thought to be even more effective. A good source for magnesium oil, gel, lotion and flakes that are absorbed through the skin is http://www.ancient-minerals.com. 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 at http://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). While this is an important component in fibromyalgia syndrome, it is unlikely that toxins directly cause the muscle dysfunction experienced in fibromyalgia. Another theory is 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 fibromyalgia 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 a 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. An inexpensive, safe alternative to HGH injections is a homeopathic HGH spray reported by some to have positive results. Go to: www.drmaxpowers.com.
A couple of interesting scientific studies were conducted on the muscle; and collagen and muscle pathology in fibromyalgia patients by the Parker Institue, Department of Rheumatolgy and the Danish National Library of Science and Medicine in Copenhagen, Denmark. They found that fibromyalgia patients had a significantly lower amount of intramuscular collagen that may lower the threshold for muscle micro-injury and thereby result in nonspecific signs of muscle pathology. Studies on muscle metabolism in fibromyalgia patients showed that there is a defect that is not seen at rest and when the patient is working at a submaximal load, but is seen under maximal loading and under static contraction. Blood flow did not increase as the load increased indicating a disturbed local regulation of microcirculation; lower levels of ATP and phosphocreatine were found in muscle biopsies of fibromyalgia patients; and fibromyalgia patients had EMG activity between muscle contractions indicating a prolonged relaxation or recovery time in patients withfibromyalgia. http://rheumatology.oxfordjournals.org/content/43/1/27
It is my personal opinion that the muscle condition of fibromyalgia is a symptom of dysfunction in the Central Nervous System resulting from a protective response of the brain to physical stress and trauma. In my case this was due to the prolonged stress of living with an obstructive breathing disorder that became increasingly difficult to compensate for and eventually lead to a state of neurological exhaustion. The actual tipping point for me was rehearsing a very difficult piano piece on a poor instrument which set in motion some sort of trauma to my neuromuscular system. This incident occurred after I had struggled with chronic fatigue for 28 years, was functionally hypothyroid and had just entered menopause. 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. It is important to note that the mechanisms and triggers for pain are not the same in all patients with fibromyalgia however all share in common a state of central sensitization.
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” http://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. However as with Whitcomb's technique the effects are temporary.
In 2007 I was diagnosed with an obstructive breathing problem by Dr. Farrand Robson and began treatment for that with Oral Systemic Balance a therapy that uses oral appliances or mouth pieces to facilitate ease of breathing. To read more about that go to my post http://fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html. At the time my fibromyalgia was quite severe causing me to be in pain most of the time and making it difficult for me to drive a car, carry grocery bags or walk more than one block. Although I experienced dramatic improvements in my health with OSB and a resolution of the underlying stressor that led me to develop chronic fatigue syndrome, many symptoms including my fibromyalgia muscle condition did not go away. This I believed was the result of traumatic injury to my nervous system after years of living with profound physical. Recovery required me to find additional therapies to reverse these dysfunctions.
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, they did not results in improvements in my health. I think this was because my dysfunctional brain patterns were very entrenched.
I then 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 experienced moderate improvements in many symptoms with LENS but my muscle condition did not improve. 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 Verity Medical Let and distributed by Win Health at www.win-health.com/neurotrac_simplex.html. I began practicing for a half hour once or twice a day, training my muscles tone to decrease. Within several weeks I noticed an improvement in my muscle tone resulting in an increase in the amount of physical activity I could "get away with". Doing daily biofeedback training provides a valuable tool to help my muscles recover more quickly after exertion but it does not prevent injury from reoccuring. To read more about various forms of biofeedback and neurofeedback and my experience with them read my post "Biofeedback Therapies for CFS & FMS" http://fibrofriends.typepad.com/fibro_friends/2010/05/biofeedback-therapies-for-cfs-fms.html
Low Intenstiy/Level or "Cold" Laser Therapy is a treatment that is helpful for treating pain in some people with fibromyalgia. It involves the application of red to near infrared light produced by Low Level Lasers Diodes (LLLD) and/or Superluminous Diodes (SLD) over the skin which results in a healing response of the tissues. This healing response includes increased production of ATP, RNA and DNA synthesis, serotonin and endorphins, collagen synthesis, growth hormone and improved lymphatic drainage. I explored a form of Low Intensity Laser Therapy manufactured by a company called MediTech used by my chiropractor. The pain relief was moderate and not long lasting. For more information on light therapies and my personal experience read my post "Phototherapy - Healing with Light". http://fibrofriends.typepad.com/fibro_friends/2010/07/phototherapy-healing-with-light.html
The developing fields of energy medicine which employ various forms of electrical current to help the body heal are also helpful in the treatment of fibromyalgia. These therapies employ non-invasive devices that generate low levels of electrical energy to stimulate cellular repair. Cell membranes vibrate at specific frequencies and diseased cells have weaker amplitudes and unbalanced electronic charges in the molecules often referred to as free radical damage. The therapies work by re-charging the damaged molecular systems and thus restoring balance and increased energy into body systems. Studies have demonstrated their effectiveness in healing soft tissue wounds, aiding in bone growth and repair, suppressing inflammatory responses at the cell membrane level and alleviating pain.
Dr. Carol McMakin is a chiropractor in Portland, Oregon who specializes in a treatment called Frequency Specific Microcurrent, which employs microamperage current and the resonance effects of specific frequencies on tissues and conditions to create beneficial changes in symptoms and health. FSM is effective at treating nerve and muscle pain, inflammation and scar tissue. McMakin has developed one frequency combination that has been observed to eliminate severe all body pain in fibromyalgia associated with spine trauma. She reports success treating hundreds of fibromyalgia patients with this protocol. For more information go to: frequencyspecific.com.
Another form of energy medicine employed mainly by LENS practitioners as an adjunct therapy to neurofeedback is NeuroField, a pulsed electromagnetic field therapy developed by Dr. Nicholas Dogris which treats the energy field around a person with specific frequencies shown to be beneficial for various conditions. I spent seven months doing NeuroField treatments in conjunction with LENS treatments with a therapist in California with modest improvements in my overall health. To read more about my experience and the entire field of energy medicine read my post "Energy Medicine of the Future"http://fibrofriends.typepad.com/fibro_friends/2011/03/energy-medicine-of-the-future.html.
"The Energetic Fitness System" is a static electrical energy field therapy based on the science of Nicola Tesla. This therapy differs from other forms of energy medicine because the electrical frequencies are not set by a computer program determined by a practitioner. Rather the energy field produces analog harmonic frequency patterns that are rapidly changing and different for each person; the theory being that the individual using EFS "tunes" to the energetic field and gets the frequencies he or she needs to heal and balance their body. I have personally found EFS to be the most beneficial form of energy medicine that I have used. For more information on EFS and my personal experience with it read my post "Energetic Fitness System" http://fibrofriends.typepad.com/fibro_friends/2011/07/energetic-fitness-system.html.
In conclusion the condition of fibromyalgia varies from person to person, however most have in common an agitated nervous system that results in dysfunctional muscle function and pain in the connective tissues. Recovery requires a combination of therapies that can address underlying causes of stress on the body, calm the nervous system and provide the body with energy to heal. Just as there is no one cause of fibromyalgia, there is no one "cure" or treatment that works for everyone. Each person must find through trial and error what works for them. Considering the fact that most of the effective therapies are not covered by health insurance or even known about in the medical community, this makes the task of getting better difficult. I am hopeful that effective therapies will eventually become more available and contribute to an improved quality of life for those suffering from fibromyalgia.
