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For many with Fibromyalgia, stigma bars the way to treatment

Wednesday 7 March 2012


From Everyday Health:


Everyday HealthFor Many With Fibromyalgia, Stigma Bars the Way to Treatment

A new survey finds that 59 percent of fibromyalgia patients delayed getting a diagnosis or treatment because of fears that people would think they were complaining or faking symptoms.

By Amy Solomon, Senior Editor

WEDNESDAY, Feb. 29, 2012 — Over six million Americans are currently diagnosed with fibromyalgia, a chronic pain disorder with symptoms like muscle aches, fatigue, and moodiness. But according to a new survey, many patients choose to endure the discomfort and disruption of life with fibromyalgia because of the stigma attached to this often misunderstood condition.

The online survey of 400 adults with fibromyalgia was conducted by the American Osteopathic Association. Among the findings, 59 percent of respondents delayed getting a diagnosis or treatment for fear that people would think they were complaining or faking symptoms, and 39 percent didn't believe that they would be taken seriously. On average, patients experienced fibromyalgia symptoms for three years and saw at least three different doctors before receiving an accurate diagnosis.

Their reluctance perhaps isn't surprising. According to the survey, one in three Americans have never heard of fibromyalgia or don't consider it a disease. And because fibromyalgia is a so-called invisible illness, it's common for those living with the condition (who may look perfectly healthy on the outside) to feel that others — including health care professionals as well as family and friends — don't take them seriously.

The lack of understanding may be even greater than with other chronic pain conditions. A 2010 study published in Annals of the Rheumatic Diseases that compared the experiences of patients with fibromyalgia and with rheumatoid arthritis found that the fibro patients reported significantly less understanding from their family, medical professionals, colleagues, and social services than those with RA. The fact that most fibromyalgia patients are women may also play a role in the stigmatization of this disorder.

But fibromyalgia takes a huge toll on patients' daily lives. Nearly all (97 percent) of the survey respondents could name at least one activity they would do more often if they didn't have the condition, including such everyday things as sleeping through the night (81 percent) and exercising (80 percent).

Although there's no cure for the condition, fibromyalgia treatment usually involves a multistep approach including both medication and other lifestyle changes. But the first step to getting help is finding the right physician.

In a press release about the survey, Jennifer Caudle, DO, an AOA board-certified family physician in Philadelphia and an assistant professor at the University of Medicine and Dentistry of New Jersey-School of Osteopathic Medicine, emphasized this point: "The most important step to living an active life with fibromyalgia is finding the right physician. [Fibromyalgia] patients can live normal, healthy lives with the support of family, friends, and a physician who is willing to work with them one-on-one.”


The above originally appeared here.


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