Fibromyalgia: The Controversy Continues

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Fibromyalgia: The Controversy Continues

New disagreements over pain syndrome

By Janice Billingsley

HealthScout Reporter

SATURDAY, March 3 (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 , associate professor of medicine at

the University of Texas in San 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 , comparing the

situation to before 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,

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 University of 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.

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.

SOURCES: Interviews with I. Jon , M.D., Ph.D., associate professor of

medicine, director, University Clinical Research Center, University of

Texas, San ; Roland Staud, M.D., associate professor of medicine,

division of rheumatology and immunology, University of Florida College of

Medicine, Gainesville; Frederick Wolfe, M.D., director, Arthritis Research

Center Foundation, Wichita, Kan.; Don Goldenberg, M.D., professor of

medicine, Tufts University School of Medicine, Boston; Nabih Abdou, M.D.,

Ph.D., professor of medicine, University of Missouri Medical School, Kansas

City; Shirley Mynatt, fibromyalgia patient, Kansas City, Mo.