Medical Special Section Elusive Battle Pain — and Skepticism — Still Plague Fibromyalgia Patients by Carolyn Cosmos When Frances Winfield Bremer stepped up to the podium at the National Press Club in Washington, D.C., in January, she was by turns grave and good-humored — tackling her topic, fibromyalgia, with a deft touch. A teacher, writer, artist and wife of former U.S. Iraqi envoy L. Paul Bremer III, she was also candid about a disease she said has shaped her life. “This is not a death sentence,” Frances Bremer said. “But it is a life sentence. As I stand here my clothes hurt. My hands hurt resting on this nice podium. The skin of my face hurts because it’s a little cold today.” Bremer has fibromyalgia syndrome (FMS), which primarily afflicts women and is characterized by chronic, at times debilitating pain, stiffness, tender points throughout the body, fatigue and sleep difficulties. FMS is sometimes found in people who also have rheumatoid arthritis, clinical depression, lupus, irritable bowel syndrome or chronic fatigue syndrome, as well as those who later develop Parkinson’s disease. Symptoms come in cycles and may last a year, a week, or 24 hours. Indeed, given its unpredictable nature and ability to overlap with other conditions, fibromyalgia often confounds doctors and patients alike. For instance, many — but not all — fibromyalgia patients suffer from clinical depression, although patients can respond to treatment with antidepressants whether diagnosed with fibromyalgia or not. According to Dr. Daniel Clauw, a professor at the University of Michigan Medical School and executive director of its Chronic Pain and Fatigue Research Center, the fibromyalgia-depression connection varies for two reasons: First, fibromyalgia co-occurs with a host of other diseases partly because our brain chemicals multitask, and neurotransmitters out of kilter in fibromyalgia have a role in other body processes and diseases, including clinical depression and Parkinson’s. Second, anyone with chronic pain has a heightened risk of normal or “reactive” depression to that initial medical condition. “Depression is 20 to 25 percent more common among people with any chronic disease, such as diabetes,” Clauw noted. As a result, fibromyalgia patients can present doctors with a confusing collection of symptoms that have often been misdiagnosed—or dismissed as imaginary. Pushing the Issue Bremer is part of a push to improve physician education and public awareness about fibromyalgia, serving as spokeswoman for the National Fibromyalgia Association, which sponsored the January press conference. She is also one of the estimated 3 million to 6 million people in the United States who have FMS. Here, as in other countries, fibromyalgia appears in 2 percent to 5 percent of the population, experts say, primarily among middle-age women. (The female to male ratio is nine to one worldwide.) This type of education push is needed, patients and advocates say, because it is “still a problem to get diagnosed with FM [fibromyalgia], be taken seriously, and to find a knowledgeable doctor,” said Gwenn Herman, founder and director of the Pain Connection - Chronic Pain Outreach Center in Maryland. Before her fibromyalgia was identified in 2005, Herman had seen 19 physicians and 20 other therapists. California resident Lynne Matallana, 53, founder and president of the National Fibromyalgia Association, had a similar experience. “I saw 37 doctors over a period of two and a half years,” she recalled. Matallana was diagnosed with fibromyalgia in 1995, but even with health insurance, her family’s out-of-pocket expenses came to $25,000. Bremer, who also “struggled for years” with mysterious symptoms, said, “It’s a tremendous relief to have a name for it.” For both patients and practitioners in the field, it’s been an uphill battle for recognition—but why? Ignorance and gender bias as well as the vague symptom profile are some of the reasons, according to D.C.-area rheumatologist Dr. Sarah Cochran. Similarly, Clauw of the University of Michigan Medical School said skeptics tend to be “older male physicians who have not kept up” with the medical literature and current science. Many of the controversies about fibromyalgia seemed to be largely put to rest in 1990, when the American College of Rheumatology published diagnostic criteria for fibromyalgia that looked to pain and tenderness at 18 pain-sensitive “trigger points” located along muscles in the neck, shoulders, hips and legs. In 2004, experts told The Washington Diplomat that the criteria were being accepted and used worldwide (see February 2004 issue). However, the controversy and confusion flared up again with the publication of an article in the New York Times on Jan. 14, 2008. Written by Alex Berenson, a reporter who covers the pharmaceutical industry, the article questioned the existence of fibromyalgia and whether the disorder was being used as a vehicle for lucrative new drug offers, such as Pfizer’s recent promotional campaign for Lyrica, the first medicine approved to treat fibromyalgia. “Advocacy groups and doctors who treat fibromyalgia estimate that 2 to 4 percent of adult Americans, as many as 10 million people, suffer from the disorder,” the article said. “Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.” Berensen also described fibromyalgia as a “nebulous condition” of “unknown origin” with “vague complaints,” citing skeptical doctors who variously said fibromyalgia was a response to stress or other disorders, or that it was a character deficiency and not a disease—an inability to adapt to life’s “vicissitudes” unlike “most of us.” In fact, one of the main skeptics quoted in the article was Dr. Frederick Wolfe, director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia. “Some of us in those days thought that we had actually identified a disease, which this clearly is not,” said Wolfe, who now believes fibromyalgia is a physical response to stress, depression, and economic and social anxiety. “To make people ill, to give them an illness, was the wrong thing.” Fact or Fiction? The National Institutes of Health and the Food and Drug Administration both now recognize fibromyalgia as a medical condition characterized by altered pain processing. The World Health Organization (WHO) recognized it as a “soft tissue disorder” back in 1992, and more recently it has begun to address the pain component. National Fibromyalgia Association President Matallana met with World Health officials in Geneva last fall, and this March Matallana’s organization was invited to participate in a WHO panel charged with developing new normative guidelines for managing acute and chronic pain. Driving this increased interest is an “explosion” of fibromyalgia research over the last five years, said the University of Michigan’s Clauw, pointing to thousands of fibromyalgia articles published in medical journals, new articles coming out every month, and “many pharmaceutical companies looking for new drugs to treat it.” Research at the clinical level shows fibromyalgia patients have a “heightened problem with pain sensitivity,” said Dr. Patrick Wood, chief medical advisor to the National Fibromyalgia Association and a former professor at Louisiana State University. “With damage to their tissues, a fibromyalgia patient will feel significantly more pain” than others with the same damage. Additionally, at the extreme end, a fibromyalgia patient can have pain throughout the entire body without any inflammation or damage to the tissues at all, according to Wood. Next Page

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