The pain is real, but is fibromyalgia a condition? Depends who you ask

[Guest guest]

Many of you may have been upset by Dr. Fred Wolfe's comments in the recent

NY Times article, and rightfully so - it is painful to read about a doctor

who is actively conducting FM research and is publicly discrediting fibro.

And, it isn't the first time Dr. Wolfe has been quoted in the press as a

fibromyalgia skeptic.

Here is an article going back to 2003. At least this article points out

more current research and more data from Dr. Clauw, who is perhaps

the FM community's greatest researcher and ally. This article may be

quoting skeptical comments made by Dr. Wolfe, but it focuses on the studies

that have been done to prove that FMS is a real, diagnosable illness, and

the pain IS real!

Shari

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The pain is real, but is fibromyalgia a condition? Depends who you ask

http://www.arthritis.org/Resources/DisplayScreamingNews.asp?id=300

Kansas City Star

03/31/2003

Fibromyalgia is a term that meets with a lot of skepticism in the medical

community.

To many doctors, it conjures up images of fussy, self-absorbed women with

untreated psychological issues.

" We've taken stress, psychosocial distress and pain and the ordinary life

experiences some people have and turned them into something they're not -- a

physical illness, " said Fred Wolfe. He's a Wichita rheumatologist who for

years believed in fibromyalgia. He even took a lead role in defining the

criteria now used to diagnose the condition.

In light of what he views as the social and economic toll that have resulted

as people have embraced this diagnosis for themselves, Wolfe changed his

mind and has joined the nonbelievers.

" I think...using the word `fibromyalgia' is harmful, " Wolfe said. " This

isn't a disease, it's merely a description of symptoms. "

Janis Koch is a Kansas City psychologist who is appalled by those who

dismiss fibromyalgia as some fantasy of a troubled mind. She says she has

suffered from the condition for at least a decade.

" I have seen so many people so ill with this over the last few years that it

really makes me angry when people cannot believe that it exists, " she said.

" The medical model is pretty rigid, and people trained in the medical model

have a very difficult time thinking outside the box. "

Dan Clauw is a physician who does think " outside the box. " A medical

researcher at the University of Michigan School of Medicine, he's been

studying the persistent all-over pain that is at the core of the baffling

diagnosis of fibromyalgia. His conclusion: It's true what the fibromyalgia

patients have been saying for years. They really do hurt all over.

Clauw's work is only some of the latest in a growing body of evidence that

fibromyalgia isn't a figment of some unhappy woman's imagination. It's a

disorder of the body's pain regulation system in which, as Clauw says, the

volume on the body's pain messages is turned up too high.

Researchers investigating the physical basis for the condition have

documented numerous chemical differences between those with and without

fibromyalgia.

The research findings are beginning to change a few minds, said ce

Bradley, a psychologist and professor of medicine at the University of

Alabama's medical school in Birmingham. He also does research into

fibromyalgia.

" I think there is much more acceptance of this now than there was 10 years

ago when I first got involved in the research, " he said.

Some of the most recent evidence comes from an experiment in which Clauw and

a colleague, Gracely, used a device to apply pressure to the

thumbnails of a group of subjects, half of them with a fibromyalgia

diagnosis, half without. The researchers watched the activity in the

subjects' brains with a magnetic resonance imaging machine. The differences

were impressive, according to Clauw.

The fibromyalgia patients were quicker to report pain. More significantly,

the brain scans bore out their claims. Activity in the pain-processing

region of the brain was much greater in the fibromyalgia patients.

The bottom line: The fibromyalgia patients' claims of greater pain were

proven true by the MRI pictures.

" The majority of the scientific community that studies pain didn't find this

to be a revelation, " he said. " This was an incremental step that

corroborated a lot of things that had previously indicated abnormalities in

people with fibromyalgia. "

There's more evidence that something's amok in the pain systems of people

with fibromyalgia. Several studies have found they have two or three times

the normal amount of Substance P, a compound involved in sending pain

messages in the body.

Researchers also have found that people with fibromyalgia have relatively

low levels of several compounds that diminish pain sensation. One of them is

the hormone cortisol, an anti-inflammatory compound that the body produces

particularly when under stress. Another is the brain chemical serotonin.

People with fibromyalgia also seem to have lower levels of endorphins, a

family of compounds that elevate mood and dampen feelings of pain.

Fasy is an associate professor of pathology at the Mount Sinai

Medical School in New York City. He's been studying the apparent

endorphin-deficiency in people with fibromyalgia.

Given the high incidence of autoimmune conditions such as lupus and

rheumatoid arthritis among people with fibromyalgia, Fasy wondered whether

fibromyalgia might be another autoimmune condition. He's been studying

samples of blood serum, looking for autoantibodies, chemical agents that

might attack and destroy endorphin-type compounds, resulting in higher

levels of pain.

Fasy said the results of his study " are encouraging but not yet definitive. "

Wolfe, the skeptic, accepts that individual biochemistry varies. However, he

said, the context and meaning of those numbers is clear as mud.

" It doesn't tell us what came first, the chicken or the egg, " he said.

Studies so far suggest there's no single abnormality that causes all

fibromyalgia, said Clauw, from the University of Michigan. Several

mechanisms are involved in producing and transmitting pain signals. Any one

of those, he said, could result in " the volume control turned up too loud "

in a person's pain messaging system.

It's estimated that fibromyalgia afflicts at least 2 percent of Americans,

the vast majority of them women. One of them is Phyllis Woolard, of Kansas

City, Kan. She says she feels largely recovered from her fibromyalgia, which

for several years caused her intense pain that flared up with the slightest

provocation.

" I'd go to the doctor and he'd say, `Where does it hurt?' and I'd say, `All

over. Just touch my flesh anywhere.' "

Woolard's doctor called her condition fibromyalgia, but he didn't know what

to do about it. He prescribed medications. She concocted mixtures of

arthritis medicine and pain formulas and headache pills and muscle

relaxants.

" It's a little scary, looking back on it, " she said.

Baffled, the doctor suggested she search the Internet for help.

About three years ago she found a fibromyalgia support group. She began

drinking more water and taking vitamin- and mineral-laden nutritional

supplements. Two years ago she met a chiropractor who advised her to avoid

caffeine and heavily processed foods and certain chemicals to which, he

claimed, she was allergic. Woolard underwent some treatments, including oral

chelation and network spinal analysis, that are widely scorned in the

medical establishment.

Eventually Woolard felt good enough to stop wearing the face mask she'd used

to protect herself from troublesome fumes and compounds. She resumed

working. She now considers herself to be " 80 percent recovered. "

The treatment of fibromyalgia, like nearly every aspect of this confounding

condition, is at an embryonic stage. Certain anti-depressants, because they

increase the amount of serotonin, are sometimes prescribed. Neurontin, a

drug usually given to epileptics, also can relieve pain in some cases.

Two of the most widely embraced treatment strategies are exercise and what

Bradley calls " coping skills training. " Exercise is recommended because a

weak body is more prone to pain, he said. Activity also can be therapeutic

because it naturally hikes endorphin levels.

Teaching people to cope with their pain is a strategy used for other

conditions, such as cancer, Bradley said. How people feel and think about

their pain makes a difference.

" People who believe they can manage their pain do manage their pain better, "

he said. Relaxation techniques and helping people focus on something other

than their discomfort " helps people change their beliefs about their ability

to manage their pain. "

In one respect Bradley agrees with the skeptics: There is a psychological

component to fibromyalgia -- as there is to cancer or any number of other

illnesses.

But he and others would argue, that doesn't mean it's all in people's heads.