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Fibromyalgia -- what is known and unknown

Mike Smail

Imagine being in a large amount of pain and not knowing the cause. Or, having a disorder that’s not recognized by a significant amount of medical professionals. This cloud of uncertainty hangs over the millions that suffer from fibromyalgia, a disorder with an unknown cause and limited treatments.

This week on "Take Care," Dr. Robert Shmerling talks about the controversial disorder known as fibromyalgia. Dr. Shmerling is a Harvard Medical School professor and clinical chief of rheumatology at Beth Israel Deaconess Medical Center in Boston.

Click 'Read More' to hear our interview with Dr. Shmerling.

Dr. Shmerling says fibromyalgia “is a condition of unknown cause, a rather mysterious condition. The cause is chronic pain, long-standing pain, and it’s body wide. It tends to affect the upper and lower half of the body, the left and right side of the body, especially in the joints and muscles. It’s quite common and poorly understood.”

Diagnosis of fibromyalgia can often be very difficult, as the symptoms can mimic those of other conditions. There isn’t a definite test for it, like most other disorders. Dr. Shmerling calls the diagnosis one of exclusion, “because you have to exclude other things that can look a lot like it.”

While fibromyalgia is recognized as a diagnosable disorder by the National Institutes of Health, many medical professionals have had a difficult time recognizing it because of the uncertainty surrounding it. Dr. Shmerling points to two reasons why fibromyalgia hasn’t gained the amount of legitimacy other disorders have:

  1. It has an unknown cause.
  2. Unlike other disorders, there isn’t really anything to measure. “So with everything normal and nothing that one can see on an examination, everything is subjective, with respect to pain. It calls into question in the mind of the observer whether it’s real or not,” he says.

While some theories call it a muscle disease, many believe that it has a psychological basis. Dr. Schmerling says that recent brain tests have led to the belief that fibromyalgia is a condition of abnormal pain processing.
Whatever the cause, Dr. Schmerling points out that women are at a much higher risk of developing fibromyalgia than men. Most cases occur in people between the ages of 20 and 50, with family members of people suffering from fibromyalgia at a higher risk than others.

While diagnosing fibromyalgia may be difficult, treating it is not any easier. While a primary care physician should be the first person contacted, Dr. Schmerling says treatment often becomes a multidisciplinary function.

“It is a condition often taken care of by multiple physicians—pain specialists, psychologists, rheumatologists, physical therapists—coordinated by the primary care physician but involving other caregivers,” says Dr. Schmerling.

Because of this, Dr. Schmerling calls treatment of fibromyalgia “very individualized,” meaning that treatment varies from person to person. While pain medication often helps, Dr. Schmerling has found that regular exercise is the most effective form of treatment.

Alternative forms of treatment, such as yoga and acupuncture, have become more popular in recent years. Dr. Schmerling recommends giving these a try if exercise and pain medication alone aren’t cutting it.

“Individual patients that I’ve seen have reported improvement with these approaches. So, I think anything that is safe with reasonable consideration by the patient, I would encourage because we don’t have ideal therapies for this, and patients often find their own way to feel better,” he says.

Dr. Schmerling also recommends findinga good support system. “It’s a frustrating condition. I think there is a measure of relief in finding physicians or caregivers that take the condition seriously. I think support, education and reassurance can be really helpful,” he says.