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 or condition of inflammation that responds to anti inflammatory drugs or steroids. 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” or "non-articular (not in the joints) 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 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 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. Rheumatologists 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; wearing compression garments such as socks, tights and sleeves when active; 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 adopted a lifestyle where I constantly rotate my activities, never using any one set of muscles for more than 15 minutes.
Dr. Paul Whitcomb a chiropractor 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.
Dr. Byron Hyde, one of the premier medical doctors and researchers on chronic fatigue syndrome and related disorders defines fibromyalgia as "a pathological hyper-elasticity of the peripheral vascular system or anything that causes this pathological expansion". A subset of people with fibromyalgia have an excessive amount of elasticity in their connective tissue due to a genetic disorder called Ehlers-Danlos Syndrome that manifests itself in lax or hypermobile joints, ligaments and skin. For the majority of people with fibromyalgia hyper-elasticity is caused by dysautonmia - a term describing malfunction of the autonomic nervous system that controls heart rate, blood pressure, digestive tact peristalsis, and most importantly blood volume, which is typically low.
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.
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 with fibromyalgia. http://rheumatology.oxfordjournals.org/content/43/1/27
Muscle Dysfunction in Fibromyalgia may be the result of low cardiac output and problems with microcirculation found in the overlapping condition Chronic Fatigue Syndrome. A growing body of research has found has found many abnormalities in the cardiovascular system of persons with Chronic Fatigue Syndrome. For more on this read my post "Cardiovascular Abnormalities in CFS" http://fibrofriends.typepad.com/fibro_friends/2013/03/cardiovascular-abnormalities-in-chronic-fatigue-syndrome.html These abnormalities can lead to exercise intolerance and fibromyalgic pain. More women suffer from Fibromyalgia Syndrome than men although Chronic Fatigue Syndrome occurs in equal proportions in both sexes. This may be because men have a higher capillary cross-sectional area or more capillaries than women.
Breathing and air passage problems can cause cardiovascular dysfunction in persons with chronic fatigue and fibromaylgia syndromes. This can improve with Oral Systemic Balance, a therapy developed by a TMJ dentist named Dr. Farrand Robson that uses oral appliances or mouth pieces to facilitate ease of breathing and balance to the autonomic nervous system. Through heart ultra sound, EKG, and heart rate variability testing Robson has established a direct correlation between restrictions in the air passage and changes in heart functions and he is successful at improving oral and cardiovascular function through adaptations to the contours and positions of his appliances. Oral Systemic Balance provided the foundation for my personal recovery from both chronic fatigue and fibromyalgia syndromes, however full recovery required the addition of several other therapies. To read more about Oral Systemic Balance and my experience go to following posts: http://fibrofriends.typepad.com/fibro_friends/2010/02/oral-systemic-b.html and http://fibrofriends.typepad.com/fibro_friends/2014/01/oral-systemic-balance-the-second-chapter.html
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.
An entirely different form of neurofeedback called “Low Energy Neurofeedback Systems or LENS, 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. 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 microvolt. 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 reoccurring. 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 Super luminous 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.
Fibromyalgia when accompanied by gastrointestinal problems such as Irritable Bowel Syndrome may be the result of an overgrowth of bacteria in the small intestine. This condition overwhelms the liver's detoxifying resulting in a condition of toxemia that can cause a heightened sensitivity to pain, malabsorption of nutrients critical for mitochondrial function, and impaired muscle metabolism. Small Intestinal Bacterial Overgrowth or SIBO is diagnosed with a lactulose breath test that measures hydrogen and methane gas. Dr. Mark Pimentel, IBS researcher and director of the Gastrointestinal Motility Program at Cedars-Sinai Medical Center in Los Angeles studied a group of 42 fibromyalgia patients and found hydrogen levels during breath testing that were significantly higher than non-fibromyalgia ISB patients and healthy control patients. He reports success treating SIBO and fibromyalgia with specific antibiotics and diet. To learn more about this important component of fibromyalgia read Dr. Pimentel's book "A New IBS Solution Bacteria-the Missing Link in Treating Irritable Bowel Syndrome" and go to http://www.siboinfo.com.
I personally explored most of the therapies described in this post receiving in many cases improvement in my overall health but treating Small Intestinal Bacterial Overgrowth was ultimately what completely resolved my fibromyalgia muscle pain. For more on this read: http://fibrofriends.typepad.com/fibro_friends/2014/07/small-intestine-bacterial-overgrowth-a-complication-of-chronic-fatigue-and-fibromyalgia-syndromes.html
In conclusion the condition of fibromyalgia varies from person to person, however most have in common an agitated nervous system, gastrointestinal problems and cardiovascular dysfunction resulting in a perfect storm of multiple symptoms. Recovery requires a combination of therapies that can address underlying causes of stress on the body, bring balance to the autonomic nervous system and treat complications. 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 many 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.
LENS is more commonly known as a therapy called BIOFEEDBACK. It helps some FM sufferers (as does Neurofeedback), but is not a 'CURE" for the dyfuntioned CNS+ANS+Para and Sympathetic Nervous Systems in BRAIN, and the dysfunctioned ENDOCRINE system, Pineal Gland responsible for Melatonin Hormone Production, Dysfunfunction of the Hypothalamus (Pain receptor and distributor),plus MUSCLUKOSKELETAL system of brain. If one knows this (I am Southern Africa's Head researcher and Head of FM+CFS+Adrenal Fatigue+ME/Cfids based South Africa (affiliated to USA College of Rheumatology) and work with the best of the world's researchers who have PROVEN via EMG BRAIN studies that the VISUALS of FM's brains are DIFFERENT IN ALL SYSTEMS, CELLS, TRANMITORS, to any other human WITHOUT the FAMILILIAL, HEREDITARY, AND PRE-DISPOSITION GENTIC material. EMG studies as far back as 2004 showed that the THYMUS GLAND sitting behind the STERNUM, that is responsible for feeeding the SENSORY nervous system in brain, is 4CM SMALLER THAN ANYONE WHO IS NOT BORN WITH FM!! Further, FM and all the other above-mentioned illnesses, including TTT, are called FUNCTIONAL MEDICINE AND ARE NOT UNDER THE BANNER OF SCIENTIFIC ORGANIC MEDICINE. Thus, an INTGRATIVE, ANTIAGEING SPECIALIST/HEALTHCARE CONSULTANT is the person to look for - MAY TIMES, not medical drs, but those with PERSONAL EXPERIENCE AND STUDIES IN THE FIELDS OF LENS, Biofeedback, Antiageing Supplementation, Rehab Physiatry, Bowen +Cranio Sacral and Myofacsial Therapists, definately COUNSELING such as NLP +Lifestyle Coaching for sufferes is all important.
There is no cure for anyof us - I however, along withmany who were 'near death', at times, am now 18years in REMISSION, due to CORRECT GUIDANCE AND CARE, BUT ESP DUE TO MY OWN KNOWLEDGE THAT I HAD TO 'TAKE MY LIFE BACK' AND NOT BECOME THE VICIM ANYMORE TO ALL THE ABOVE CONDITIONS, BUT DECIDED TO BECOME THE SURVIVOR, when just 1 man 'believied and knew all that time back about THE TRUTH OF SELF-WORTH AND SELF HELP, along with 'the team', and made my world turn round 180 degrees forever. Make the decision to LEARN, to have the POWER OF INTENTION that you will do EVERYTHING IT TAKES, HOLISTICALLY, GUIDED BY PEOPLE WHO REALLY KNOW ABOUT FUNCTIONAL ILLNESSES AND WIN FOR TODAY AND THE REST OF YOUR LIFE. Best of luck/Sharon Levin www.fibromyalgiasa.co.za.
Posted by: Sharon Levin | December 25, 2009 at 01:42 AM
LENS is a unique form a EEG biofeedback. It differs from traditional neurobiofeedback "training" and has been effective for many people suffering from dysfunctions of the Central Nervous System. Of course it is not a "cure" or "silver bullet" by itself. CFS/FMS is a very complex disorder affecting multiple systems. But if one pursues a variety of healing strategies which I have listed on my opening post of www.fibrofriends.typepad.com it is possible to regain a good quality of life.
Posted by: Darden Burns | December 26, 2009 at 04:29 PM
If you have fibromyalgia where do you feel pain? Can anxiety/depression cause fibromyalgia, or is it more likely that fibromyalgia may cause anxiety/depression
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Posted by: bridesmaiddresses | April 12, 2011 at 02:18 AM
Fibromyalgia symptoms are most often associated with muscle pain, but every fibromyalgia symptom arises from muscle cells unable to function normally. (You may have additional health issues and symptoms, too.) The pain you are experiencing--this is your muscles calling for help
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studies have
demonstrated that fibromyalgia patients cannot detect electrical, pressure,
or
thermal stimuli at lower levels than normal individuals do, but the point at
which these stimuli cause pain or unpleasantness is lower. [15] [16] Other
studies have examined regional differences in pain sensitivity and have
demonstrated that although tender points are anatomic locations that are
more
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Im 23 years old and experiencing ed....im 5'3 AND weigh 169 which puts me just under the obese category with a BMI of 29. Im not fat at all but mostly muscle does this mean im still overweight and could this be a cause of my ed?
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A LENS session lasts only seconds as opposed to a neurofeedback training session, which typically lasts around 45 minutes
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xercise. It may be the last thing you feel like doing, but it has been shown to help symptoms. Exercises well suited to those with fibromyalgia are cycling or stationary cycling, walking, and swimming.
Posted by: Rosa Robinson | January 18, 2013 at 08:36 PM
It is incorrect that fibromyalgia is not a condition of inflammation. There is mounting scientific evidence that pro-inflammatory cytokines in cerebral spinal fluid are more common in people with fibromyalgia
Here is one such article with these findings:
http://www.sciencedirect.com/science/article/pii/S0165572811002992
Posted by: Tanya | September 28, 2013 at 06:47 PM