A quarter of fibro patients felt their doctors didn't consider their condition "very legitimate."(ISADORA WILLIAMS)On top of their daily struggle with pain, fibromyalgia patients are sometimes forced to fight another battleconvincing doctors, friends, coworkers, and others that their condition is real and that their pain is not all in their head.
Women suffer disproportionately from fibromyalgia, the symptoms are complex, and there is no cure. For these reasons, many patients and some doctors say that fibromyalgia is under-recognized and undertreated in the U.S.
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"It was maddening. I felt like most of the doctors I saw were not acknowledging that I was really in pain," says Shelley Kirkpatrick, 32, of Bellefontaine, Ohio, who began experiencing fatigue and excruciating joint and muscle pain in 2004.
"I felt they were thinking I was exaggerating my symptoms or that I was making them up entirely," says Kirkpatrick. "Even to the point where I saw a neurologist who told my husband to take me to a psychiatrist because there was nothing wrong with me."
Finally after two years of fruitless tests, her doctor told her she had fibromyalgia.
A high emotional price to pay
In a 2007 survey of more than 2,000 fibromyalgia sufferers, more than a quarter reported that their health-care provider did not view fibromyalgia as a "very legitimate" disorder.
It's called the "credibility issue" in the fibromyalgia community. And while the situation has improvedit helps that the Food and Drug Administration approved a drug, Lyrica, for fibromyalgia in 2007patients still face these challenges.
Not being believed can have emotional consequences. Kathleen Wisz, 68, of Woodridge, Ill., suffered on-and-off pains in her neck and upper back for 20 years before she was diagnosed with fibromyalgia in 1992. Over the course of those frustrating two decades, most doctors recommended she be treated by a psychiatrist. Wisz reacted by withdrawing into herself.
"I just stopped going to see doctors. It was horrible, I wouldn't talk to anybody about what I was feeling." Often she'd just blame herself.
"I felt that maybe if I could learn to relax or whatever, then it would go away." But during a six-month spell of all-over aches, pains, and flu-like symptoms, she was sent to a rheumatologist who gave her a diagnosis of fibromyalgia. "I never heard the word before he said it," she says. Relieved to finally have a diagnosis, Wisz started reading about the condition and joined a support group.
Next Page: But why is credibility even a factor? [ pagebreak ]But why is credibility even a factor?
For one thing, it's still a relatively young syndrome, and was barely discussed at the national level until the 1990s. The American Fibromyalgia Syndrome Association was founded in 1994. The National Fibromyalgia Association (NFA) was founded in 1997.
Even today there's by no means unanimity in the medical community that fibromyalgia is a legitimate condition.
"There's an extremely wide range of opinions of physicians, ranging from it doesn't exist at all to it's a true illness. At a guess I'd say it's probably no better than fifty-fifty," says John Kincaid, MD, a neurology professor at the Indiana University School of Medicine, in Indianapolis, and a former board member of the American Association of Neuromuscular and Electrodiagnostic Medicine.
"In fact I was at a dinner with two other nerve-and-muscle neurologists and one was a believer and the other was what you could call an 'eye roller.'"
A New York Times article this past January demonstrated the contradictory beliefs that surround the syndrome. The story quoted a researcher who helped define fibromyalgia in 1990 but has since changed his mind. He said it "clearly is not" a disease and added: "To make people ill, to give them an illness, was the wrong thing."
Not an easy syndrome to treat
Fibromyalgia presents as a cluster of nebulous symptoms, and there is no definitive cure, so treatments are based on trial and error. This can be tremendously frustrating to physicians and that means patients suffer.
"Sometimes [doctors] take out their frustrations on the patients and blame the patients for the illnesses," says fibromyalgia expert Daniel Clauw, MD, director of the Chronic Pain and Fatigue Research Center at the University of Michigan, in Ann Arbor. "There's a long history of this in medicine."
Todd Sitzman, MD, a past president of the American Academy of Pain Medicine, thinks primary care doctors are frustrated by fibromyalgia. They "don't like treating patients with this condition chronically, year after year," says Dr. Sitzman, since there's no cure and fibromyalgia patients can be hard to manage.
Next Page: Sexism at work? [ pagebreak ]Sexism at work?
Patrick Wood, MD, a senior medical adviser to the NFA, believes that sexism may be at the root of this.
"Why in this society are we so free to dismiss the complaints of 30- to 50-year-old women? Why can we marginalize their experience so easily? It really does become an issue of gender politics. Why can we marginalize her and disregard her complaint, and yet if she were a man the same age we might take her seriously?"
Skepticism extends beyond the medical community. It can be difficult claiming a medical condition in everyday life when, on the outside at least, you appear fine.
"I had a handicap decal for my car because I can't walk long distances," says Kirkpatrick. "And people seem almost angry that I'm parking in a handicapped spot because I don't have a deformity, and I don't walk with a walker or a cane. People have asked me, 'What's wrong with you?' and when I tell them about fibromyalgia they look at me like I've just made something up out of the blue."