Few conditions are more frustrating than fibromyalgia. On the one hand, it is neither fatal, disfiguring, nor crippling and it usually doesn't grow progressively worse. On the other hand, no one yet knows what causes it or how to cure it.

The word fibromyalgia literally means "pain of the fibrous tissue (ligaments and tendons) and muscles." It is not considered to be a disease but a constellation of symptoms and signs that range in severity from mild to severe. The common denominators are tenderness at certain points in the body and diffuse muscle pain; fatigue, disordered sleep, and depression often fill out the picture. People with fibromyalgia may also suffer from headaches, irritable bowel syndrome, temporomandibular joint syndrome, premenstrual syndrome, and chest pain.

In most cases there appears to be no physical reason for the symptoms; the body's joints, muscles, and nerves are usually normal. Nor is there any indication that an infection or injury is responsible, although patients often report having had a virus or experiencing trauma before the onset of symptoms.

For more than 100 years, what is now called "fibromyalgia" was a condition in search of a name. It was once known as fibrositis, or fibromyositis, but those names, like others with the "itis" suffix, suggest inflammation. They were dropped when research failed to demonstrate that inflammation was consistently part of the syndrome. It has occasionally been included under the umbrella "myofascial pain syndrome," a term that has come to refer to less specific muscular pain.

In 1990, the American College of Rheumatology adopted standard criteria for the diagnosis based upon a multicenter study of women with the characteristic symptoms. The committee decided that to be diagnosed with fibromyalgia a patient had to have widespread achiness or pain and at least 11 of 18 standard "tender points," as illustrated in the next column. According to the ACR, about 75% of patients with fibromyalgia syndrome also experience poor sleep, overwhelming fatigue, and stiffness. Fibromyalgia was added to the World Health Organization's classification of diseases in 1992.

Because fibromyalgia leaves no physical evidence, there is no way to identify it directly; instead it is diagnosed by ruling out a panoply of other disorders that can produce similar symptoms. To do so can require looking for arthritis, rheumatism, connective-tissue diseases, thyroid disease, or neurologic disorders. In the process women may undergo extensive laboratory testing, imaging procedures, and visits to doctors. Most women diagnosed with fibromyalgia are between the ages of 20 and 55, and 90% of cases have been reported in Caucasian, middle-class women.

Looking for a perpetrator
The search for the cause of fibromyalgia has led scientists down several avenues of investigation, most of which have proven to be blind alleys. Because the condition often runs in families, some researchers have looked for evidence of a gene defect, but have found none. Epidemiologists have failed to turn up likely environmental suspects. Even the detected abnormalities in muscle metabolism are thought to be due to deconditioning resulting from inactivity rather than an intrinsic defect.

Scientists have also explored the possibility that fibromyalgia is the result of an underlying sleep disorder, because electroencephalographic (EEG) studies of patients have revealed abnormal stage IV or deep sleep. In contrast to most healthy people whose EEG tracings indicate several uninterrupted periods of deep sleep each night, patients with fibromyalgia typically generate EEG patterns that indicate breaks in this sleep stage. Other experiments have shown that people who are healthy but not particularly fit often feel achy and exhausted after a night of deep-sleep disruptions. The question that remains is whether the malaise of fibromyalgia is the result of sleep disturbances or whether patients can't sleep well because they're in pain.

One of the most promising directions in research is the study of levels of neural hormones -- the chemicals that carry messages between the brain and central nervous system and other parts of the body -- in patients with fibromyalgia. There is some evidence to suggest that women who have fibromyalgia have lower than normal levels of somatomedin-C, which plays an important role in muscle maintenance and repair and is released by the liver in response to growth hormone. Since about 80% of the daily supply of growth hormone is secreted during the deepest phase of sleep, some scientists theorize that disruptions during this stage may be responsible for a shortage of somatomedin-C, and thus the predisposition to muscle weakness and fatigue.

Other studies have pointed to a deficit in circulating levels of the neurotransmitter tryptophan in patients with fibromyalgia. Tryptophan is the precursor of serotonin, another neurotransmitter that plays an important role in inhibiting pain and in inducing deep sleep. These findings lend credence to the theory that patients with fibromyalgia may have low pain thresholds and may be naturally light sleepers.

Fibromyalgia has also been described as occupying a place on a spectrum of mood disorders because its symptoms resemble those of clinical depression, anxiety, and somatoform disorders (those that have a psychological origin). Some psychiatrists have speculated that all of these conditions may arise from a single source.

Regardless of fibromyalgia's origin, it eventually becomes a self-perpetuating cycle of pain, fatigue, and disordered sleep. Its symptoms wax and wane; they are often exacerbated by stress, illness, and abrupt changes in the weather and relieved by relaxation.

If your symptoms have sent you to the doctor, be prepared to undergo an extensive series of tests to rule out possible conditions such as a neurological disorder or thyroid disease, which warrant immediate treatment. You may want to think about seeing a rheumatologist, who may make the diagnostic process speedier due to longer experience in identifying and treating the condition.

Getting a fibromyalgia diagnosis provides a certain relief because it puts to rest fears of fatal or progressive disease. It also marks the end of the search for a diagnosis and the beginning of a hunt for a way to ease the symptoms effectively. The object is often to try to break the vicious cycle of symptoms by concentrating on the one that is most annoying -- the aches and pains, the fatigue, or the fretful sleep. One cardinal rule for dealing with fibromyalgia is to assume responsibility for managing it; another is to pursue only treatments whose effects are no worse than those of the symptoms, such as the following:

Muscle conditioning. A well-chosen exercise is perhaps the most important factor in treating fibromyalgia. Low-impact exercise like swimming and bicycling is recommended for increasing muscle tone and cardiovascular capacity; stretching exercises may alleviate stiffness. Granted, it's difficult to psych up for an exercise routine when you ache all over, but a physical therapist can help you to devise a program that maximizes your potential and minimizes pain. If you're working out on your own, try taking a warm bath before and after exercise. Although you may notice the pain more for a few days after you begin the program, it should abate as your muscles become conditioned.

Pain relief. Small doses of analgesics like acetaminophen and non-steroidal anti-inflammatory medications such as aspirin, ibuprofen, and naproxen may relieve pain and stiffness somewhat. Narcotic pain relievers, tranquilizers, and steroid derivatives should be avoided because of their possible adverse side effects and potential for addiction. Pain clinics may offer instruction in other forms of pain control including biofeedback, hypnosis, and behavior modification. Local injections of xylocaine into particularly tender spots may nonetheless provide temporary relief, although the shots aren't exactly painless.

Sounder sleep. Antidepressants such as amitriptyline (Elavil) and doxepin (Adepin, Sinequan) are prescribed in very low doses and only at bedtime -- not to elevate mood but to improve sleep. Muscle relaxants such as cyclobenzaprine (Flexeril) may also improve sleep by relieving tension. These medications have side effects such as daytime drowsiness, constipation, dry mouth, and increased appetite. Therefore a number of different medicines may need to be tried and doses adjusted by your doctor.

Reappraisal. You may want to look at fibromyalgia as a body process rather than an infirmity and to accept a certain level of discomfort as an athlete "training through the pain" might. Some women who have decided to downplay their condition and get on with their lives have found that as they increased their level of activity, their symptoms improved.

For Further Information

Fibromyalgia Network
5700 Stockdale Highway, Suite 100
Bakersfield, CA 93309

Arhritis Foundation
Box 19000
Atlanta, GA 30326

National Institute of Arthritis,
Musculoskeletal, and Skin Diseases
Bethesda, MD 20892

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