Fibromyalgia: Patients say many doctors don’t take them seriously

By Sam McManis
Published: Sunday, May. 31, 2009 – 12:00 am | Page 2I

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 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.

A 2008 University of Michigan study showed that fibromyalgia patients exhibited central nervous system abnormalities that resulted in elevated sensitivity to pain and stimuli. The study, however, tested only 31 subjects.

Other research using functional MRI brain scans show increased activity in pain receptors for even minor discomfort among fibromyalgia patients.

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