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Fibromyalgia (FM or FMS) is a debilitating chronic syndrome (constellation of signs and symptoms) characterized by diffuse or specific muscle, joint, or bone pain, fatigue, and a wide range of other symptoms. It is not contagious, and recent studies suggest that people with fibromyalgia may be genetically predisposed. It affects more females than males, with a ratio of 9:1 by ACR (American College of Rheumatology) criteria . Fibromyalgia is seen in 3% to 6% of the general population, and is most commonly diagnosed in individuals between the ages of 20 and 50. The nature of fibromyalgia is not well understood, with many frustrated physicians driven to accusing their patients of feigning illness. There are few, if any, treatments available, and there is no cure, but the disease is not life-threatening.
Fibromyalgia has been studied since the early-1800s and referred to by a variety of former names, including muscular rheumatism and fibrositisTemplate:Fact. The term fibromyalgia was coined in 1976 to more accurately describe the symptoms, from the Latin word fibra, meaning fiber, myo, meaning muscle,and the Greek word algos, meaning pain.
Fibromyalgia was once considered an autoimmune disorder, but laboratory results reveal no disturbance of the immune system, although reactivated viral infection has been identified in a subset of patientsTemplate:Fact. Much to the dismay of patients, it was classified as a psychosomatic disorder, most prominently by psychiatrists at the Institute of Psychiatry at Kings College London and by Harvard psychiatrist Jonathan Barsky. As of 2006, there are no known fibromyalgia researchers ouside the field of psychiatry that still agree with this classification.
The primary symptom of fibromyalgia is widespread, diffuse pain, often including heightened sensitivity of the skin (Allodynia), achiness around joints, and nerve pain. Chronic sleep disturbances are also characteristic of fibromyalgia, and some studies suggest that these sleep disturbances are the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness.
Many patients experience "brain fog", also known as "fibrofog", which is objectively proven abnormally slow brain waves and objectively proven cognitive deficitsTemplate:Fact. Many experts suspect that "brain fog" is directly related to the sleep disturbances experienced by sufferers of fibromyalgia.
Other symptoms often attributed to fibromyalgia (possibly due to another comorbid disorder) are physical fatigue, irritable bowel syndrome, genitourinary symptoms such as those associated with the chronic bladder condition interstitial cystitis, dermatological disorders, headaches, myoclonic twitches, and symptomatic hypoglycemia. Although it is common in people with fibromyalgia for pain to be widespread, it may also be localized in areas such as the shoulders, neck, back, hips, or other areas. Not all patients have all symptoms.
Fibromyalgia can start as a result of some trauma (such as a traffic accident) or illness, but there is currently no known strong correlation between any specific type of trigger and the subsequent initiation of fibromyalgia. Symptoms can have a slow onset, and many patients have mild symptoms beginning in childhood, such as growing pains. Symptoms are often aggravated by unrelated illness or changes in the weather. They can become more tolerable or less tolerable throughout daily or yearly cycles; however, many people with fibromyalgia find that, at least some of the time, the condition prevents them from performing normal activities such as driving a car or walking up stairs. The syndrome does not cause inflammation as is presented in arthritis, but anti-inflammatory treatments, such as Ibuprofen and Iontophoresis, are known to temporarily reduce pain symptoms.
Variability of Symptoms
The following factors are said to temporarily increase the suffering of patients:
- Cold weather, especially when damp
- Malnutrition, hunger, or starvation
- Physical activity of any kind, including minor tasks such as writing
Some patients have reported a near-complete remission of their symptoms within several weeks of traveling to a warm, or tropical climate, and the complete renewal of symptoms upon returning.
When making a diagnosis of fibromyalgia, a practitioner would take into consideration the patient's case history and the exclusion of other conditions such as endocrine disorders, arthritis, and polymyalgia rheumatica. There are also two criteria established by the American College of Rheumatology for diagnosis:
- A history of widespread pain lasting more than three months — widespread as in all four quadrants of the body, i.e., both sides, and above and below the waist.
- Tender points — there are 18 designated possible tender points (although a person with the syndrome may feel pain in other areas as well). During diagnosis, four kilograms-force (40 newtons) of force is exerted at each of the 18 points; the patient must feel pain at 11 or more of these points for fibromyalgia to be considered. Four kilograms of force is about the amount of pressure required to turn fingernails white or to feel pain sensations on the forehead. This technique was developed by the American College of Rheumatology as a means of confirming the diagnosis for clinical studies. It is also used in the United Kingdom. Pressure on nearby areas rarely elicits any reaction.
A number of other disorders can produce essentially the same symptoms as fibromyalgia. Other disorders known to produce similar symptoms are:
- Myofascial Pain Syndrome
- Chronic Fatigue Syndrome
- Gulf War Syndrome
- Thyroid disease
- Vitamin B12 deficiency
- Lyme disease
- Celiac Disease
- Mercury toxicity
- Lead poisoning
- Lupus erythematosus (SLE)
- Whiplash-Associated Disorder
As with many other soft tissue and rheumatolgical organic disorders, there is no cure for fibromyalgia, but some treatment options are available. A patient may try many routes of treatment under the guidance of a physician to find relief. Treatments range from symptomatic prescription medication to alternative and complementary medicine.
One experimental treatment is the use of the Guaifenesin Protocol, developed by Dr. R. Paul St. Amand. Because of the large number of patients improving on Guaifenesin, there are now several doctors throughout the U.S. who are using the Guaifenesin protocol in their practicesTemplate:Fact.
Low doses of antidepressants like amitriptyline and trazodone may be used to reduce the sleep disturbances sometimes associated with fibromyalgia and are believed by some practitioners to help correct sleep problems that may exacerbate the symptoms of the condition. Because depression often accompanies chronic illness, these antidepressants have additional psychological benefits for patients suffering from depression. Amitriptyline is often favoured as it can also have the effect of providing relief from neuralgenic or neuropathic pain. Some doctors advise against using narcotic sleep aids ("hypnotics"), since these can actually disrupt deep sleep.
New drugs showing significant efficacy on fibromyalgia pain and other symptoms include milnacipran, gabapentin, meloxicam and possibly pregabalin. Milnacipran belongs to a new series of drugs known as serotonin-norepinephrine reuptake inhibitors (SNRIs), and is currently available in parts of Europe where it has been safely prescribed for other disorders. As of August 2005, Milnacipran is the subject of a Phase III study, and, if ultimately approved by the FDA, will be distributed in the United States.
Studies have found gentle exercise, such as warm-water pool therapy, improves fitness and sleep and may reduce pain and fatigue in people with fibromyalgia. Stretching is recommended to allay muscle stiffness and fatigue, as is mild aerobic exercise. Because strenuous activity can exacerbate the muscle pain and fatigue already present, patients are advised to begin slowly and build their activity level gradually to avoid inducing additional pain. Exercise may be poorly tolerated in more severe cases with abnormal post-exertional fatigue.
Cognitive behavioral therapy has been shown to improve quality of life and coping in fibromyalgia patients and other sufferers of chronic pain.
Treatment for the "brain fog" has not yet been developed, however biofeedback and self-management techniques such as pacing and stress management may be helpful for some patients.
A number of practitioners are attracted to the treatment of fibromyalgia, especially because its cause has yet to be identified, and due to its permanent nature, ongoing treatments can be very profitable. While this interest may promote legitimate medical research, patients should be wary: treatments of dubious validity exist in the meantime.
Living with fibromyalgia
Fibromyalgia can affect every aspect of a person's life. While neither degenerative nor fatal, the chronic pain associated with fibromyalgia is pervasive and persistent. FMS can severely curtail social activity and recreation, and as many as 30% of those diagnosed with fibromyalgia are unable to maintain full-time employment. Like others with disabilities, individuals with FMS often need accommodations to fully participate in their education or remain active in their careers.
In the United States, those who are unable to maintain a full-time job due to the condition may apply for Social Security Disability benefits. Although fibromyalgia has been recognized as a condition, along with chronic fatigue syndrome, by the government, applicants are often denied benefits. However, most are awarded benefits at the state judicial level; the entire process often takes two to four years.
In India, the position with reference to this condition is unclear. However, where the person is rendered incapable of maintaining a regular life due to any disability, he/she can claim disability benefits. Indian laws guarantee that discrimination against people with disabilities is a violation of their individual rights.
Fibromyalgia is often referred to as an "invisible" illness or disability due to the fact that generally there are no outward indications of the illness or its resulting disabilities. The invisible nature of the illness, as well as its relative rarity and the lack of understanding about its pathology, often has psychosocial complications for those that have the syndrome. Individuals suffering from invisible illnesses in general often face disbelief or accusations of malingering or laziness from others that are unfamiliar with the syndrome.
Theories on the cause of fibromyalgia
The cause of fibromyalgia is currently unknown. Over the past few decades, many theories have been presented, and the understanding of the disorder has changed dramatically. Most current theories explain only a few symptoms of the disorder and are thus incomplete.
The sleep disturbance theory postulates that fibromyalgia is related to sleep quality. Electroencephalography (EEG) studies have shown that people with fibromyalgia lose deep sleep. Circumstances that interfere with "stage 4" deep sleep (such as drug use, pain, or anxiety) appear to be able to cause or worsen the condition.
According to the sleep disturbance theory, an event such as a trauma or illness causes sleep disturbance and, possibly, some sort of initial chronic pain. These initiate the disorder. The theory supposes that "stage 4" sleep is critical to the function of the nervous system, as it is during that stage that certain neurochemical processes in the body reset. In particular, pain causes the release of the neuropeptide substance P in the spinal cord, and substance P has the effect of amplifying pain and causing nerves near the initiating ones to become more sensitive to pain. Under normal circumstances, this just causes the area around a wound to become more sensitive to pain, but, if pain becomes chronic and body-wide, then this process can run out of control. The sleep disturbance theory holds that deep sleep is critical in order to reset the substance P mechanism and prevent this out-of-control effect.
An interesting aspect of the sleep disturbance/substance P theory is that it explains "tender points" that are characteristic of fibromyalgia but which are otherwise enigmatic, since their positions don't correspond to any particular set of nerve junctions or other obvious body structures. The theory posits that these locations are more sensitive because the sensory nerves that serve them are positioned in the spinal cord to be most strongly affected by substance P. The theory also explains some of more general neurological features of fibromyalgia, since substance P is active in many other areas of the nervous system.
Critics of the theory argue that it does not explain slow-onset fibromyalgia, fibromyalgia present without tender points, or patients without heightened pain symptoms, and a number of the non-pain symptoms present in the disorder.
Also of interest is a possible connection between this theory and the theory that chronic fatigue syndrome and post-polio syndrome are due, at least in part to damage to the ascending reticular activating system of the reticular formation. This area of the brain, in addition to apparently controlling the sensation of fatigue, is known to control sleep behaviors and is also believed to produce some neuropeptides, and thus injury or imbalance in this area could cause both CFS and sleep-related fibromyalgia, explaining why the two disorders so often occur together.
Another theory involves phosphate and calcium accumulation in cells that eventually reaches a level to impede the ATP process, possibly caused by a kidney defect or missing enzyme that prevents the removal of excess phosphates from the blood stream. This theory posits that fibromyalgia is an inherited disorder, and that phosphate buildup in cells is gradual (but can be accelerated by trauma or illness). Calcium is required for the excess phosphate to enter the cells. The additional phosphate slows down the ATP process; however the excess calcium prods the cell to continue producing ATP (76.7kb pdf).
Diagnosis is made with a specialized technique called mapping, a gentle palpitation of the muscles to detect lumps and areas of spasm that are thought to be caused by an excess of calcium in the cytosol of the cells. This mapping approach is specific to deposition theory, and is not related to the trigger points of myofascial pain syndrome.
While this theory does not identify the causative mechanism in the kidneys, it proposes a treatment known as guaifenesin therapy. This treatment involves administering the drug guaifenesin to a patient's individual dosage, avoiding salicylic acid in medications or on the skin, and, if the patient is also hypoglyemic, a diet designed to keep insulin levels low.
The phosphate build-up theory explains many of the symptoms present in fibromyalgia and proposes an underlying cause. The guaifenesin treatment, based on this theory, has received mixed reviews, with some practitioners claiming many near-universal success and others reporting no success. Only one controlled clinical trial has been conducted to date, and it showed no evidence of the efficacy of this treatment protocol. This study was criticized for not limiting the salicylic acid exposure in patients, and for studying the effectiveness of only guaifenesin, not the entire treatment method. As of 2005, further studies to test the protocol's effectiveness are in the planning stages, with funding for independent studies largely collected from groups which advocate the theory.
Fibromyalgia as severe TMS
Another theory is that fibromyalgia is a severe form of Tension myositis syndrome (TMS) which is a mindbody disorder popularized in the books on healing back, neck, and other limb pain by Dr. John E. Sarno of the Howard A. Rusk Institute of Rehabilitation Medicine. Briefly the theory is that in many cases chronic pain is the result of physical changes (primarily mild oxygen deprivation) caused by the brain through the autonomic nervous system as a strategy for distracting you from painful or dangerous unconscious emotions such as repressed anger. Treatment is through a program of education and attitude change which stops the brain from using that chronic pain strategy. Psychotherapy is suggested in the minority of cases where education alone is not sufficient.
Other theories relate to various toxins from the patient's environment, viral causes such as the Epstein-Barr Virus, growth hormone deficiencies, neurotransmitter disruptions in the central nervous system, and erosion of the protective chemical coating around sensory nerves. Due to the multi-systemic nature of illnesses such as fibromyalgia and chronic fatigue syndrome (CFS/ME), an emerging branch of medical science called psychoneuroimmunology (PNI) is looking into how the various theories fit together.
Cutting across several of the above theories is a theory that proposes that fibromyalgia is almost always a comorbid disorder, occurring in combination with some other disorder that likely served to "trigger" the fibromyalgia in the first place. This concept fits especially well with the sleep disturbance theory.
By this theory, some other disorder (or trauma) occurs first, and fibromyalgia follows as a result. In some cases, the original disorder abates on its own or is separately treated and cured, but the fibromyalgia remains. In other cases the two disorders coexist. This theory would explain why such a wide variety of symptoms are often ascribed to fibromyalgia, since there are potentially a wide variety of comorbid disorders. It also helps explain why fibromyalgia is so hard to treat, since the fibromyalgia is unlikely to abate while the comorbid condition is untreated.
Commonly proposed comorbid/trigger disorders are:
- Spinal disorders
- Physical trauma, as from a traffic accident
- Post-surgical pain
- Chronic fatigue syndrome
- Irritable Bowel Syndrome
- Myofascial Pain Syndrome
- Thyroid disease - for example Hashimoto's thyroiditis; thyroid hormone substitution can be helpful in some cases
- Lyme disease
- Post-polio syndrome
- Hypermobility (including Ehlers-Danlos syndrome)
- Restless Leg Syndrome
- Clinical depression
- Lupus erythematosus (SLE)
Some physicians believe that fibromyalgia is not an actual symptom complex. They claim that the symptoms of fibromyalgia are manifestations of depression, along with symptoms of unrelated diseases such as chronic fatigue syndrome, Epstein-Barr syndrome, interstitial cystitis, irritable bowel syndrome, bacterial infection, and others.
Skeptics point to the following list - some of which is no longer true - to support their skeptical positions:
- lack of objective evidence to support patient's claims of suffering (no longer true)
- divergent or unrelated symptoms ("syndrome")
- the different rates of illness among members of different culturesTemplate:Fact
- a relative lack of evidence-based treatments
- a correspondingly large number of "quack" healers providing unproven, incorrect, or ineffective diagnosis and treatment
Some medical authorities who are unaware of the current objective physiological indicators revealed by recent research (such as substance P abnormalities) still believe that depression and psychological factors are the root cause of the syndrome, similar to hypochondria, despite the fact that as of 2006, there are no known specialist fibromyalgia researchers who agree.
- "This isn't a disease, it's merely a description of symptoms... We've taken stress, psychosocial distress and pain and the ordinary life experiences some people have and turned them into something they're not -- a physical illness"
- -- Dr. Fred Wolfe, a skeptical Rheumatologist who ironically helped define the disease earlier in his career.
However, depression should be expected to accompany any debilitating illness. In other words, depression is not a special trait of fibromyalgia. Interestingly, many victims of fibromyalgia either do not suffer from depression at all, or they did not suffer from it until after it's onset.
See also Faqs on Fibromyalgia
- The National Fibromyalgia Association U.S
- ARC booklet
- Fibromyalgia Fact page
- FM-CFS Canada - to find Canadian support groups
- Fibromyalgia caused by hypothyroidism? (discussion article)
- Fibromyalgia Alternative Network magazine (MyFANnews.com)
- Long Term Disability Claims - FAQ's