- The Washington Times - Sunday, January 6, 2002

Margaret Goldbloom was annoyed when she couldn't get a grip on her gardening tools. She was concerned when she had trouble sleeping and suffered aches and pains in her arms. She was frustrated when doctors told her tests showed nothing amiss.

But something was wrong. Mrs. Goldbloom of Chevy Chase, Md., eventually was diagnosed with fibromyalgia, a disorder characterized by chronic pain and fatigue that can also include other ailments such as migraines, irritable bowel syndrome and depression.

"It was a shock," says Mrs. Goldbloom, now 59, of the diagnosis, which came nearly a decade ago. "I had just taken up windsurfing. I was a former gymnast. Why don't couch potatoes get this?"

Mrs. Goldbloom, one of about 3 million people mostly women in the United States who are believed to have the disorder, has been able to resume her active schedule in the past few years by carefully managing her condition. By combining exercise, rest and medication, she has control over the disorder, which probably will never completely go away.

"No question, if you have been a very active person who is immobilized by this, it can make you depressed," she says. "It is a balancing act; you can be depressed because of the fibromyalgia, but you don't have fibromyalgia because you are depressed. Positive thinking and finding out what works for you will get you back on track."

There is no definitive blood or X-ray test for fibromyalgia the way there is for, say, high cholesterol or rheumatoid arthritis. The syndrome was not even recognized by mainstream medicine as a medical condition until 1990.

Because of that, some doctors are still stumped by the patients who come in with complaints similar to Mrs. Goldbloom's.

"There are still a number of people who are skeptical," says Dr. Daniel Clauw, a rheumatologist at Georgetown University Medical Center. "It is part of a spectrum of illness that falls into a gray zone, with no evidence on lab tests."

Dr. Clauw tells other physicians to suspect fibromyalgia when a patient comes in complaining of widespread pain. That would differ from rheumatoid arthritis, for instance, which is more localized in joint swelling.

The American Academy of Rheumatology has developed diagnostic criteria for fibromyalgia if the patient has widespread pain in at least 11 of 18 "tender points" located throughout the body.

Often, fibromyalgia symptoms will begin following an emotional or physical event such as a car accident, surgery or severe illness that shocks the central nervous system, Dr. Clauw says. Researchers have found that some with fibromyalgia have an abnormal central nervous system reaction, which makes them interpret ordinary repetitive stimulation as crippling pain.

"In 1,000 patients, there is no one triggering event that seems most common," says Dr. Russell Rothenberg, a rheumatologist and an associate professor of medicine at George Washington University Medical Center. "But it upsets me when I hear 'emotions' as the cause of it. It is not a psychiatric illness. It is a chronic pain disease."

Recent research sponsored by the National Institutes of Health studied whether a link exists between abnormally low levels of the hormone cortisol and fibromyalgia. Although they are unsure why, researchers found that people whose bodies make an inadequate amount of cortisol experience many of the same symptoms as those with fibromyalgia.

Scientists are also looking to see if there is a link between fibromyalgia and Lyme disease, as some patients develop fibromyalgia after having Lyme disease, an infectious disorder associated with arthritis and chronic fatigue.

There is ongoing research investigating a genetic link, whether behavioral therapy will improve sleeplessness, and how stress exacerbates the condition.

Dr. I. Jon Russell, associate professor of medicine at the University of Texas Health Science Center and author of "The Fibromyalgia Help Book," says low levels of the hormone serotonin play a part in how fibromyalgia patients cope with pain.

Serotonin is key to sleep regulation and the interpretation of pain signals. So when levels are low, pain and sleep disturbances might be exacerbated.

Individual recipes for treatment

Because every fibromyalgia sufferer has different symptoms and triggers, there is no uniform prescription for managing symptoms, Dr. Rothenberg says. There is also no medication specifically approved just for fibromyalgia.

Dr. Clauw says low doses of tricyclic antidepressants such as Effexor or Elavil can have a positive effect on neurotransmitters such as serotonin and norepinephrine. The newer class of antidepressants selective serotonin reuptake inhibitors such as Paxil, Zoloft and Prozac do not work as well for fibromyalgia, he says.

But because antidepressants are commonly prescribed to these patients, it can add weight to the skeptics' argument that fibromyalgia is all in the patient's head.

"Fibromyalgia is caused by changes in how the central nervous system processes pain," Dr. Clauw says. "Many of the same neurotransmitters responsible for pain processing are involved in mood disorders. Tricyclic pills can also help sleep."

Sleep problems also can be treated with sleeping pills such as Klonopin. Many patients find the muscle pain is helped with over-the-counter pain relievers such as Tylenol, Advil or Aleve. Dr. Clauw advises patients to stay away from narcotic painkillers, which are not as effective for fibromyalgia patients.

Many patients have been helped by nondrug therapies such as cognitive behavior therapies and relaxation techniques, he says. Alternative therapies such as acupuncture have helped others.

Moving muscles even if they are sore is essential to keeping the pain from getting worse, both doctors say.

"The best is exercise done in warm water," Dr. Rothenberg says. "Other good exercises are low-impact stretches, modified yoga and tai chi."

Mrs. Goldbloom, who has taken Elavil and takes Tylenol daily, says water exercise has helped her cope in the past decade. She exercises in deep water three times a week.

"The nice thing about water is when you climb in it, you are not really holding your body up," she says. Mrs. Goldbloom also walks up to five miles three times a week and heads a monthly support group for Washington-area fibromyalgia sufferers.

"You need to find out what works on what day," she says.

Finding what works for each individual can mean the difference in an active life or one limited by pain. That is important, since fibromyalgia has no real cure, Dr. Rothenberg says.

"You can't just prescribe a pill and hope it goes away," he says. "Potentially, the condition is there forever. Sometimes it goes into remission, although for others that never happens."

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