Pain researchers focus on better care for patients with fibromyalgia syndrome

Imagine living with constant physical pain throughout your body for the rest of your life — a pain that can feel more crippling than rheumatoid arthritis. Yet there’s no way to prove to anyone that it really exists.

Fibromyalgia currently affects some three to five million Americans, most of them in their 40s, and is six to eight times more common among women than among men. It is characterized by widespread pain and soreness in at least 11 out of 18 specific locations on the body, lasts at least three months and is often accompanied by fatigue.

“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 Dr. Dennis Turk, the John and Emma Bonica professor of anesthesiology and pain research at the 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 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, Turk points out.

Fibromyalgia is sometimes confused with chronic fatigue syndrome (CFS). Although they are similar, CFS has immunological symptoms, says 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 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.

Numerous drugs have been tried to treat fibromyalgia but at this point there is no clear evidence that any of them are effective for the majority of patients, says 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,” he adds. “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 the fatigue, pain and disability.”

Studies are under way to determine the effectiveness of various rehabilitation programs and Turk’s research includes creating sub-groups 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.” ¶

Ellen Liang