Nov. 16, 1999 (Cleveland) - For fibromyalgia sufferers who think their condition doesn?t receive adequate attention from the medical community, a new report only fuels the fire. The diagnosis and treatment of fibromyalgia -- and even whether it exists at all -- continue to generate controversy among physicians, according to Don L. Goldenberg, MD, author of an article on fibromyalgia that appears in a recent issue of the Archives of Internal Medicine.
"[Fibromyalgia] continues to be very controversial and causes a lot of frustration, both in the medical community and for the millions of people who have it," Goldenberg writes. The problem is that some physicians still haven?t accepted the existence of the syndrome because of the lack of "objective, scientific findings," says Goldenberg, chief of rheumatology at Newton-Wellesley Hospital and a professor at Tufts University School of Medicine in Boston. "Sometimes we don't pay much attention to something without scientific or laboratory evidence, and can believe it's all in people's heads."
It is estimated that fibromyalgia -- which causes pain and stiffness in soft tissue such as muscles, tendons, and ligaments -- affects about 2% of the general population. It is more common in women than in men and occurs with more frequency as people age
Fibromyalgia is especially difficult to diagnose because its symptoms are mostly subjective, which means that the discomfort sufferers experience can?t be "visibly" measured. In addition to pain, some persons with the syndrome also suffer from sleep disturbances, headaches, and fatigue. Physicians usually make a diagnosis of fibromyalgia based on 1) the number of places on the body where a patient experiences tenderness (soreness to the touch) and 2) the pattern of the pain. But a routine physical examination usually uncovers no other abnormalities.
Traditionally, Goldenberg tells WebMD, both physicians and the general population have trouble relating to any physical disease that cannot be objectively and scientifically measured. He compares the syndrome with other puzzling conditions such as migraine headaches, chronic fatigue syndrome (which fibromyalgia strongly resembles), and irritable bowel syndrome.
Even if fibromyalgia can?t be measured, Goldenberg says, it is "a common condition . . . and people are suffering as a result. These [conditions] all legitimately require further investigation and study.
"There is too much emphasis on looking at these syndromes as being distinct entities [diseases], and that's where I think some physicians and patients fall into the trap of saying that something like chronic fatigue syndrome or irritable bowel syndrome are specific conditions. I think it's more important to look at all of these disorders as 'mind-body' functional illnesses that have much more common threads," Goldenberg tells WebMD.
In the decade since fibromyalgia was identified, numerous treatment options have been studied. In clinical trials, several types of treatment -- including central nervous system medications, cardiovascular fitness training, regional sympathetic (nerve) block, biofeedback, hypnotherapy, and acupuncture -- have been effective. Some patients have benefited from taking antidepressants, but these drugs? beneficial effects appear to decrease over time, Goldenberg notes. Behavior modification and stress reduction programs also have been shown to be helpful.
Despite the continuing controversy, fibromyalgia may receive more attention in the future, because the costs of caring for people who have it can be substantial. Studies have shown that patients average 10 outpatient visits per year and sometimes use several drugs in an attempt to reduce symptoms. One 1996 study found that the mean yearly per-patient cost was $2,274.
Even with good medical care, fibromyalgia studies have shown that most patients experience little improvement in their overall condition or symptoms. Nonetheless, Goldberg says, patients with the syndrome find it reassuring to obtain "a diagnostic label," and just making the diagnosis leads to decreased use of costly testing and health care services.