Fibromyalgia stigma

Asked to describe the seemingly indescribable, to make real the manifestations of a medical condition that some still doubt even exists, fibromyalgia patients often rely on similes of the most wince-inducing sort.

Asked to describe the seemingly indescribable, to make real the manifestations of a medical condition that some still doubt even exists, fibromyalgia patients often rely on similes of the most wince-inducing sort.

“I felt like acid was going through my veins.”

“It was like a steamroller ran over me.”

“Fatigue like someone’s pulled out your battery pack.”

“. . . as if someone pinged me with a hammer all over my body.”

“Your (brain) feels like a pinball machine. You’re trying to come up with the word, and the ball bounces around until it finally falls on your tongue.”

“It feels like death, only worse.”

Can there be any doubt that these people truly are suffering from diffuse, widespread chronic pain with multiple tender spots, enervating fatigue and a host of symptoms that include restless legs, impaired memory and depression?

Well, yes.

Despite being recognized as a diagnosable disease by the American College of Rheumatology, the Food and Drug Administration and most insurers, fibromyalgia has not completely shed the stigma of being dismissed as “psychosomatic” by some in the medical establishment.

Controversy swirls even as new FDA-approved medications have shown promise and recent brain-imaging research has shown central-nervous-system changes in those afflicted. The National Fibromyalgia Association, a patient advocacy group, estimates that 10 million Americans suffer from one or more of the multifarious manifestations of the condition.

It is this array of symptoms not linked to specific cause and effect — as opposed to how rheumatoid arthritis can ravage a patient’s joints — that keeps skeptics in mainstream medicine from validating fibromyalgia as a legitimate disease.

Where, exactly, is this deep muscular aching? What’s the cause of that nebulous numbness and dizziness? Why won’t painkillers help? Where are the lab tests that can prove it exists?

Those are the questions that still dog fibromyalgia patients.

“They make you think you’re a hypochondriac or something,” says Jennifer Filbeck, 36, a former restaurant manager from Fairfield, Calif., who’s been unable to work since 2006. “Doctors treat you like you’re crazy.”

Not crazy, per se, critics of the existence of fibromyalgia claim. Their argument: These people suffer from psychological conditions that manifest themselves in vague and hard-to-define physical maladies.

Dr. Frederick Wolfe, who wrote the landmark 1990 paper that first created diagnostic guidelines for fibromyalgia, recently told The New York Times that he now considers it merely a byproduct of depression, stress and social anxiety. Wolfe, head of the National Databank of Rheumatic Diseases, told the paper, “Some of us in those days thought that we had actually identified a disease, which clearly this is not. To make people ill, to give them an illness, was the wrong thing.”

That view is supported by Dr. Nortin Hadler, a rheumatologist and professor at the University of North Carolina. Writing in the Journal of Rheumatology, Hadler states bluntly that fibromyalgia is all in the mind.

“I am suggesting that chronic persistent pain is an ideation, a somatization if you will, that some are inclined toward as a response to living life under a pall, and not vice versa,” he writes. “I am further suggesting that these people choose to be patients because they have exhausted their wherewithal to cope.”

Medical literature has been slow to publish data on fibromyalgia. Recent studies have gone a long way in disputing the claims of Wolfe and Hadler, though researchers still have yet to pinpoint a cause.

Dr. David Ferrera, medical director of the Sacramento Research Medical Group in Sacramento, Calif., has spent three years conducting clinical trials on a new treatment drug, Savella, which received FDA approval in January.

Ferrara acknowledges that “it is a complex disorder and there’s still a lot to learn,” but says fibromyalgia patients are underserved by many doctors.

“I’ve had women in tears in my office because they say, ‘You’re the first doctor who’s believed me.’ These people often take three or four years to get diagnosed. They are told, ‘Your lab tests are normal, there’s nothing wrong with you. You’re just depressed. Go get a life.’ They feel like second-class citizens and begin to feel it’s imaginary.

“The problem is, measuring differences in fibro people isn’t easily done in a doctor’s office. So they are dismissed.”

Another reason fibromyalgia patients often aren’t taken seriously, particularly by primary-care physicians, is that seven of 10 sufferers are women, says Lynne Matallana, president of the National Fibromyalgia Association.

Matallana need look no further than her own story for an example. A former advertising executive, Matallana started feeling full-body pain, fatigue, dizziness and anxiety shortly after an unrelated surgery in 1993. Doctors were as skeptical as they were baffled, she says.

“I knew I wasn’t crazy,” she says. “But you start to think, maybe I am imagining this . . . . when I finally found a doctor who used the word ‘fibromyalgia’ and said, ‘We’re going to find things that will help you get better,’ that’s when I started getting better.”

That diagnosis came three years and 37 doctors after she first felt pain. An easing of her symptoms didn’t come until seven years later, after experimenting with everything from acupuncture to yoga to antidepressants.

Matallana says that even today, “when there’s science behind it,” fibromyalgia carries a psychosomatic stigma. It’s not just doctors who doubt the condition’s existence; it’s family and friends.

Cynthia Mittel, a 53-year-old Vacaville, Calif., woman who said she used to have a high pain threshold (she delivered her children naturally; no drugs) now sometimes has trouble walking. What really troubles her, though, is lack of acceptance even by some in her family. Her first husband, she says, “sort of believed me but wasn’t supportive.” Other family members told her to toughen up.

“I basically don’t talk too much to my friends and family about it,” Mittel says. “Frankly, they are sick to death of it. I don’t care if people believe me or not.”

Mittel and Filbeck, the Fairfield patient, said they have tried the antidepressant medications Lyrica and Cymbalta without success. Filbeck says the drugs put her in what she calls “The Fibro Fog,” in which she is inattentive and forgetful.

Roseville, Calif., fibromyalgia patient Ann Davis, 62, has had trouble concentrating in her job as a graphic designer.

“You get to where you know it’s not going to kill you,” Davis says. “It’s just an inconvenient thing you’ve got to live with. The pain, I could live with. It was the fatigue that got me. You can’t function.”

Davis was so desperate in 2007 that she signed up to participate in a clinical trial for Savella, which differs from the other fibromyalgia drugs in that it blocks both serotonin (which Lyrica and Cymbalta do) and another neurotransmitter, norepinephrine (which the others do not).

She says she felt relief within a month and is back playing golf and gardening. When she was taken off the drug, symptoms resumed with a vengeance.