NurseWeek: Fibromyalgia: The controversy continues

Fibromyalgia: The controversy continues
New disagreements over pain syndrome

By Janice Billingsley
HealthScout Reporter
March 3, 2001


	You've read the article. Now tell us what you think. What To Do To find out more about fibromyalgia, visit the American College of Rheumatology. Or you can take a look at current clinical trials under way for fibromyalgia by going to the National Institutes of Health. You can also read these HealthScout stories on fibromyalgia.

(HealthScout). Shirley Mynatt's debilitating neck, shoulder, hip and leg pains were diagnosed five years ago as fibromyalgia.

She's grateful for that, surprisingly.

"It was another way of saying, 'Yes, this isn't in your head,' " says the 56-year-old Kansas City, Mo., grandmother.

For years, though, that was the response to sufferers because doubters dismissed their complaints as little more than malingering.

"Twenty years ago the perception was that ... [fibromyalgia sufferers'] pain wasn't real," says Dr. I. Jon Russell, associate professor of medicine at the University of Texas in San Antonio and co-author of The Fibromyalgia Help Book. "Now we have biochemical evidence to support their claims of what they feel."

Indeed, many doctors and researchers are encouraged by the attention now being paid to fibromyalgia, a syndrome that didn't even have a name until 1990 yet afflicts an estimated 3.7 million Americans older than 18. It also strikes women seven times more often than men, according to a 1998 National Institutes of Health report.

There is no known cause for fibromyalgia, which includes symptoms ranging from chronic and diffuse pain throughout the body, fatigue and depression.

And there is no cure.

But the scientific community has responded to the challenges posed by the syndrome with a growing body of research.

At the recent annual meeting of the American College of Rheumatology, "90 abstracts were presented on fibromyalgia," says Russell, comparing the situation to 1990, when no one believed there was such a thing as fibromyalgia. "It's quite a change."

Role of nervous system studied
Much of the new research has focused on the central nervous system, Russell says, and the biochemical pain processes of brain and spinal nerves.

For instance, in one new study researchers found that people diagnosed with fibromyalgia had more intense and longer-lasting pain than people without the syndrome when touched with a hot instrument for a brief moment.

"[Fibromyalgia patients] still had pain after two minutes, compared to 15 seconds [for those without the disorder] ... a significant difference," says Dr. Roland Staud, a Florida rheumatologist who presented his findings at the annual meeting.

Staud says his study suggests that people with fibromyalgia have a lower pain threshold than people without the disorder, and that the nerve cells responsible for firing in response to pain – part of the body's warning system – stay activated for too long in fibromyalgia patients.

However, not everyone is encouraged by the research, including one of the doctors who spearheaded the identification of fibromyalgia.

Dr. Frederick Wolfe, director of the Arthritis Research Center Foundation in Wichita, Kan., was among a group of rheumatologists who established in 1990 the criteria for diagnosing fibromyalgia.

According to the guidelines approved by the American College of Rheumatology, fibromyalgia can be diagnosed based on a patient's description of her pain, and finding the pain in at least 11 of 18 specific pressure points in the body, including the neck, shoulders, hips and knees.

But Wolfe now worries that the research he'd hoped would result from the naming of the condition hasn't yet focused on finding a cure.

"The breakthroughs are discovering [characteristics of fibromyalgia] rather than the causes," he says.

'An honest label of what it is'
But another doctor who worked with Wolfe on the fibromyalgia guidelines couldn't disagree more.

"If illness is attached to an honest label of what it is and isn't, people will respond well," says Dr. Don Goldenberg, a Tufts University rheumatologist who works extensively with fibromyalgia patients. "Also, we need to tell people what they don't have, like multiple sclerosis or lupus."

Goldenberg also says that to talk about a cure for fibromyalgia is unrealistic because it is a chronic illness, like migraine headaches or hypertension.

"We don't cure almost any chronic illness," he says, but rather identify its contributing factors, whether genetic, physiological, psychological or environmental, and treat them.

So, while doctors disagree over the progress of the fight against fibromyalgia, patients like Mynatt cope as best they can.

Mynatt had been a migraine sufferer all her life but it never interfered with her work. In 1992, however, after a bad case of the flu, she had to quit her secretarial job because she began to suffer from fatigue, discomfort and a memory loss so extensive that she couldn't remember the shorthand symbols she'd used her entire professional life. She was then diagnosed with chronic fatigue syndrome.

In 1995, she suddenly found herself experiencing a tremendous increase in pain throughout her body and went to a rheumatologist, who diagnosed fibromyalgia.

"[Fibromyalgia] affects everything. There is no part of my life that it has not seeped into," she says.

Now under a rheumatologist's care, Mynatt takes a muscle relaxant to ease her shoulder and neck pain and 10 milligrams of an anti-depressant to help her sleep. She also keeps as active as possible by walking, doing stretching exercises, and receiving physical therapy and massages.

Dr. Nabih Abdou of Kansas City, Mo., has been treating fibromyalgia patients for more than a decade and sees approximately a dozen a week. He says about half the patients he sees, almost all of them women, improve after six months of treatment similar to the type prescribed for Mynatt. Another 30 percent improve after about two years, while 15 percent are "very tough – just really resistant."

He's optimistic about the future of fibromyalgia research – "The acceptance and knowledge and information is improving" – but acknowledges that the illness is hard on his patients.

"It's not life-threatening but it's a disability, and a tragic situation for these women," he says.

This is a News story from HealthScout, a service of Rx Remedy, Inc.