On top of their daily struggle with pain, fibromyalgia patients are sometimes forced to fight another battle—convincing 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.
“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 improved—it helps that the Food and Drug Administration approved a drug, Lyrica, for fibromyalgia in 2007—patients 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.
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