Yes, It’s Real
Twenty years ago, if you mentioned fibromyalgia in conversation with a friend, the response would likely have been a blank look. Ten years ago, the response might have been, “It’s the disease of the ’90s, right? But is it real?”
Fibromyalgia is indeed real. The American College of Rheumatology, the American Medical Association, the World Health Organization and the National Institutes of Health have all accepted fibromyalgia as a distinct clinical entity.
Today, fibromyalgia is more likely to be taken seriously, though skepticism does remain. “Even among physicians,” says Dr. Angelica Gonzalez, “there are many who believe that it is psychogenic.” Dr. Gonzalez is on staff of SJ Internal Medicine, affiliated with St. Joseph Hospital in Nashua. She is board certified in internal medicine and rheumatology. Following her internship at University of Connecticut Health Center, she did a fellowship in fibromyalgia.
Fibromy — what?
“Fibromyalgia is a syndrome,” Dr. Gonzalez says. “There is a collection of symptoms but often no one conclusive originating factor. That’s what makes it so difficult to understand and to diagnose.” It was this difficulty that attracted her to the study of fibromyalgia. “There is no test, no set of tests, that identify the presence of the syndrome,” she says. “We have not yet found a structural, organic or immunologic basis. So first we test to rule out other possibilities. We then make the diagnosis on the basis of a patient’s symptoms over an extended period.”
A typical cluster of symptoms includes fatigue, muscle pain, stiffness, unrestorative sleep (or little sleep) and other pain. Headaches, pelvic pain, bowel problems and urinary tract infection may also be present. (Some patients have called it the “irritable everything syndrome.”) There is a hypersensitivity to pain, with the pain response lasting longer than it does for most people. Though fibromyalgia is often first diagnosed among people in their 30s and 40s, Dr. Gonzalez has seen patients ranging in age from the teens to the 80s.
Devin Starlanyl of West Chesterfield knows the reality of fibromyalgia from personal experience. Following completion of medical school, she began her career as technical director of a pharmaceutical house. At the same time she pursued a fellowship in emergency medicine, working in the ER at a Florida hospital.
It was a grueling schedule but she loved it, until the symptoms of fibromyalgia and myofascial (fascia surrounds and separates muscle tissue) pain syndrome became too severe to ignore. She was no longer able to keep up her work schedule. Since then, she has become a well-known authority (www.sover.net/~devstar) on the two syndromes, which she believes are related.
She points to a growing body of research that identifies central nervous system sensitivity as the dominant characteristic of the syndrome.
“For years, people with fibromyalgia were misdiagnosed,” she says. “Now we know some of the mechanisms behind it. This is not a muscle problem; the problem is hypersensitivity to pain stimuli. With this amplification of stimuli, even sound, smell or light can be painful.”
Though separate conditions, she believes that the hypersensitivity to pain in fibromyalgia amplifies the pain of trigger points in myofascial pain syndrome. Insulin resistance, she believes, is a major perpetuating factor in many cases of fibromyalgia.
What Causes It?
Much remains to be learned about the origins of fibromyalgia. For many patients, there is an initiating event that activates biochemical changes, causing what Starlanyl calls a cascade of symptoms. The initiating event might be an accident or injury, an extended illness or some combination of life stresses. Often, there are coexisting conditions and perpetuating factors that intensify the syndrome. A new stressful event or the presence of another health problem may cause a flareup and perpetuate the fibromyalgia symptoms.
Is Treatment Effective?
Dr. Gonzalez says the syndrome can become a vicious circle: The person with fibromyalgia is fatigued, aching and often in pain, so is less likely to have the energy and motivation to exercise, eat healthfully and engage in satisfying activities — all the things needed to stay well.
There is, at this point, no cure, though there may be periods of lesser or greater intensity of symptoms. Medications that may help include anti-inflammatory agents, muscle relaxants, antidepressants, and possibly analgesics. Physical therapy is sometimes helpful. Dr. Gonzalez stresses the importance of a multifaceted approach that may involve a pain specialist, a mental health counselor, a physical therapist, a rheumatologist and a family practitioner. Support groups can help, too.
Dr. Gonzalez notes that there are two drugs in development that could prove useful in treatment of fibromyalgia; both are related to drugs used to treat Parkinson disease, which would suggest a central nervous system approach. But she cautions that the studies to date have been small, and that we are far from any conclusions about these medications. At this point, treatment focuses on easing symptoms, restoring function and maintaining good health.