Fibromyalgia: the Invisible Disability

Although a higher percentage of women are affected, fibromyalgia does strike men, women and children of all ages and races.  It is characterized by widespread pain and soreness in 11 out of 18 specific locations on the body, lasts at least three months and is often accompanied by fatigue. The pain can migrate and vary in intensity. The American College of Rheumatology estimates that fibromyalgia affects an estimated two percent of the U.S. population (2004 statistic). 

"On a pain scale from 0 to 10, having fibromyalgia is like living with a level-five pain, which can be exacerbated by weather, stress and inappropriate exercise," says Dennis Turk, M.D., John and Emma Bonica professor of anesthesiology and pain research at the University of Washington School of Medicine.

The syndrome has existed at least since the early 1900s but was only defined and named in 1990 by the American College of Rheumatology. Its cause is unknown, it can strike anyone and there is no cure.

"Because fibromyalgia is so confusing, other people often wonder if it's real," says Dr. Turk. "This contributes to the sufferer's emotional distress."

Whether fibromyalgia should be considered a disability is currently being debated. With no objective physical findings to diagnose the ailment, there is concern that some unscrupulous people might use it to manipulate the system, Dr. Turk points out.

Fibromyalgia is sometimes confused with chronic fatigue syndrome (CFS). Although it is similar, CFS has an immunological basis, says Dr. Turk. Many people have an overlapping of fibromyalgia with CFS or arthritis.

Living with constant pain can be very taxing psychologically. "If you had a headache 365 days a year forever, you'd be moody, too," points out Dr. Turk. The fact that the illness is poorly understood by others contributes to stress levels. And, although psychological factors may accompany fibromyalgia, this doesn't mean that they are the cause of pain and fatigue. Sleep disorders that prevent people from getting deep, restful, restorative sleep can be a problem for many who have fibromyalgia.

Numerous drugs have been tried to treat fibromyalgia, but at this point there is no clear evidence that any of them is effective for the majority of patients, says Dr. Turk. Antidepressants have been most frequently used and tend to be effective for about 30 percent of patients, he adds.

Currently, the best treatment for fibromyalgia is exercise, based on aerobics, endurance and flexibility, in combination with information and stress management. Although exercise may initially increase pain, "we need to motivate and teach patients that hurt and harm are not the same thing," Dr. Turk says. "When patients build up endurance and flexibility, pain will decline and they will be able to function better. As they develop conditioning, they can reduce the constant pain level significantly, even if it is not totally eliminated. The more passive and inactive patients are the greater fatigue, pain and disability."

Studies are under way to determine the effectiveness of different rehabilitation programs, and Dr. Turk's research includes creating subgroups to optimize treatment. "Fibromyalgia is a poorly defined diagnosis," he says. "In the past, all patients were treated the same -- that is, they were seen as nails because the only tool available was a hammer."