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May 14, 2003
Source: Kansas City Star (03/31/2003)
By Karen Uhlenhuth
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 has 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 Laurence 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, Richard 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.
Thomas 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 antidepressants, 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.
Source: Kansas City Star: http://www.kansascity.com
Editor’s note: This article was posted on the Arthritis Foundations’ website, at http://www.arthritis.org/Resources/DisplayScreamingNews.asp?id=300/
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