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Fibromyalgia in the NEWS

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Millions with Fibromyalgia Live in Uncertain Agony

September 23, 1999 By Adam Pasick

You are in constant pain. Your doctor is not sure what is wrong with you or how to make it better, and many people don't believe you're even sick. You have fibromyalgia.

This mysterious and little-understood syndrome leaves sufferers with near-constant and excruciating muscle pain, sleep loss and fatigue, cognitive impairment and a host of other complex symptoms

Patients say that in addition to physical challenges, many of the toughest battles they fight are with an unsympathetic public.

"People would look at me and say, 'you're just fine,'" said Betsy Jacobson. "But I wake up some mornings fighting to make it through the day."

Fibromyalgia syndrome (FMS) patients are overwhelmingly women. Some suffer from childhood - though they are often not diagnosed until decades later. Other patients, like Dr. Jane Walpole, have the agonizing disease come out
of nowhere.

"I was a dentist with a private practice, and I started having trouble with my hands," she said. "Then, one day, my whole arm went numb when I was removing a tooth." She was forced to give up dentistry because of the debilitating pain.

"On a bad day, it felt like I was been attacked by a bunch of hornets all over my body," Walpole said.

More Common Than You Think

 Although few people have heard of the condition, experts estimate an astoundingly high number of Americans could suffer from FMS.

"The incidence is somewhere between 2 and 4 percent of the population," said Dr. David Nye of the Midelfort Clinic in Eau Claire, Wisconsin, who works with fibromyalgia patients. That would translate to approximately 5 and 10 million people.

For a disease that affects so many, remarkably little is known about FMS, although research has advanced markedly over the past decade. Patients are considered to have FMS if they experience severe, long-lasting pain in 11 of
18 "tender points" located near the collarbone, neck, elbows, lower back, hips and knees.

Researchers are now convinced that fibromyalgia usually shows up after episodes of stress, illness or injury, and seems to be at least partially inherited - the children of FMS patients have about a 50 percent chance of acquiring the condition. Experts are also reasonably sure that FMS is not
contagious, as the spouses of FMS sufferers are no more likely to have the condition than those married to non-FMS spouses.

Sufferers also exhibit highly abnormal sleep patterns, in which waking brain patterns known as alpha waves are present during deep sleep, which normally contains delta waves. As a result, patients wake up after hours of sleep
without feeling rested.

One leading theory on how FMS develops, according to Dr. Nye, is that the condition is actually caused by the abnormal sleep pattern.

He said experiments have shown that "research subjects whose sleep was disturbed showed symptoms similar to that of FMS patients," and he linked the effect to the level of hormones associated with the immune system known
as cytokines.

Researcher have also hypothesized that the syndrome is caused by a virus, a deficit in the levels of human growth hormone, or by an abnormality in the
central nervous system.

Treatment Options

Largely because so little is known about fibromyalgia's cause, there is no magic bullet cure.

Many physicians recommend a combination of exercise and stretching, and often a muscle relaxer or an antidepressant to aid sleep. Narcotic painkillers are not usually prescribed over the long term because doctors fear they will cause dependence and lower the patient's pain threshold.

Coming to the fore in recent years have been non-traditional treatments including acupuncture, tai-chi and yoga.

Some physicians prescribe a laundry list of drugs in an attempt to tackle FMS' multiple symptoms, but most patients say that approach just doesn't work.

"So many people are taking three or four different drugs, and [their] distress is coming from side effects," said Miryam Williamson, an FMS sufferer who advises other patients.

She added that the prospect of exercising can be daunting, but that even the smallest step can be beneficial.

"You might as well say 'you should be walking on the moon' as tell patients to do 45 minutes of exercise," Williamson said. "But I tell them to walk for two minutes today, and tomorrow walk for three minutes. By the time people
walk five minutes a day they already feel better."

Lifestyle Changes

Beyond treatment, fibromyalgia patients often discover that they need to revamp their lifestyles.

Dr. Walpole, who was forced to give up her dental practice because of fibromyalgia, said the condition forces patients to concede that their lives have changed.

"I was an advanced scuba diver, I flew helicopters and built my own kayak [before being diagnosed with FMS]," she said. "I had to learn that that way of life was impossible. I had to make the mental adjustment - it wasn't that the old Jane was dead, but you hit a fork in the road, and I had to explore
other life paths. Whining about it would have been a total waste of time."

Williamson said that patients need to radically reduce the amount of stress they experience on a daily basis, as a hectic, "type A personality" can aggravate fibromyalgia.

"Most people with fibromyalgia don't want to miss life," she said. "You get used to running on adrenaline, and you think it's normal, but it's not healthy. People can and must learn to do without adrenaline."

Turning the Tide?

For decades, the medical establishment dismissed the misery fibromyalgia syndrome sufferers. As there is no lab test that can prove that sufferers have the syndrome, many physicians are hesitant.

"There are still doctors who don't believe in it, which is absolutely infuriating," said Williamson.

But the indifference of some doctors and dearth of clinical information has spawned a widespread, informal network of FMS patients who have become their own advocates. There are numerous fibromyalgia support groups and a wildly
popular newsgroup (see sidebar for details).

"I tell people - we have to become resident experts, and know more than the doctors do," said Betsy Jacobsen, who maintains a database of physicians who specialize in treating fibromyalgia patients. "We have to do most of the
help ourselves, find a doctor who knows how to diagnose, is willing to discuss our preferred treatments, and will work with us, not despite or
against us."

And the increasing attention of leading medical researchers across the country has spurred hope among some FMS patients that effective management of their painful and debilitating condition may be in sight.

Dr. Jane Walpole certainly hasn't given up hope that she will return to performing root canals.

"I'm still licensed as a dentist," she said. "You never know when they're going to find a cure."


Monday, November 6, 2000

Page: D01

Edition: SF




Millions of Americans have disabling, chronic, widespread muscle and back pain, yet doctors can't find anything wrong with them.

They suffer from fibromyalgia.

"The syndrome is common, confusing and controversial," said Don Goldenberg, a rheumatologist and researcher at Tufts University in Boston.

Goldenberg and other experts presented the latest research on fibromyalgia at last week's annual gathering of the American College of Rheumatology, held at the Convention Center in Philadelphia. Rheumatologists specialize in diseases that cause inflammation or pain in muscles and joints.

There are no objective markers of fibromyalgia - nothing that X-rays, blood tests, muscle biopsies or MRIs can find. For many patients, fibromyalgia goes together with two other hard-to-diagnose syndromes, chronic fatigue and irritable bowel. Depression is also common.

As a result, many doctors and even some prominent rheumatologists "question the very existence of fibromyalgia," Goldenberg said. Patients' genuine misery is frequently dismissed as imaginary, or psychiatric in nature.

Although the roots of fibromyalgia remain unclear, most researchers believe it involves nervous-system chemicals, called neurotransmitters, that regulate sleep, mood, thinking and pain perception.

One clue that neurotransmitters play a role is that sleep-pattern studies show fibromyalgia patients are deficient in the deepest, non-dream stage of sleep. Another clue: Antidepressant drugs that work on certain neurotransmitters reduce pain for some patients.

Yet another is that most fibromyalgia patients complain of feeling forgetful and confused. Unfortunately, their self-impressions are accurate, said Jennifer M. Glass and Denise C. Park, researchers from the University of Michigan in Ann Arbor.

The scientists gave tests of memory, information processing and verbal fluency to three groups - fibromyalgia patients; healthy people of the same age as the patients; and elderly people without fibromyalgia. Although the fibromyalgia patients processed information (for example, matching pairs of pictures) as rapidly as healthy peers, their memory and fluency put them on a par with the older subjects.

In another study presented last week, University of Florida researchers found abnormalities in the way the central nervous systems of fibromyalgia patients interpret pain sensations. Roland Staud, a rheumatologist who led the study, said that when heated probes were briefly applied to the hands of fibromyalgia patients and healthy peers, the patients felt more pain and felt it longer - and even perceived non-painful temperatures as painful.

This "neuropathic" pain - the same kind amputees feel in a lost limb - is very difficult to treat, Staud said.

What might cause the central nervous system to go awry in fibromyalgia? One theory now being pursued is that an infectious agent attacks the immune system.

A very different theory that blamed fibromyalgia on congenital spinal cord malformations has been virtually ruled out by research presented at the conference by Georgetown University rheumatologist Daniel Clauw.

These malformations, which are fairly common, can sometimes compress nerves and require surgery. But in his study, Clauw found that the malformations were just as common among healthy subjects as among fibromyalgia patients.

Although experts still don't know the cause or causes of fibromyalgia, they agree that treatment should include not only analgesic and antidepressant medications, but exercise.

Boston rheumatologist Daniel Rooks presented a study showing that fibromyalgia patients can benefit from strength-building exercises, as well as movement that improves flexibility and stamina.

For a long time, he said, doctors feared that strength training, such as lifting weights, might make muscle pain worse, or somehow injure the tissue. But none of his patients suffered injuries, and all experienced improvements in stiffness, strength and fatigue.

Marie McCullough's e-mail address is 


An estimated 2 percent to 4 percent of adult Americans have fibromyalgia, a little-understood pain disorder that was defined by the American College of Rheumatologists only in 1990.

Symptoms: The hallmark is chronic, widespread pain, with intense pain upon touch at soft tissue sites such as behind the knees. The pain does not involve inflammation, cannot be explained by other rheumatic diseases, and is not progressive or fatal. Other symptoms include fatigue, and sleep and mood disturbances.

Diagnosis: The syndrome has no biological markers such as fractures or tumors, and thus no objective tests. The diagnosis is based on symptoms.

Causes: Fibromyalgia is presumed to involve faulty regulation of central nervous system chemicals that affect pain perception, sleep, mood and thinking. Infection, physical trauma and genetics are being investigated as possible causes.

Treatment: Certain antidepressant drugs (tri-cyclics and serotonin reuptake inhibitors), non-steroidal analgesics and fitness training are beneficial. Hypnosis, biofeedback, acupuncture and behavior modification therapy also help some people. Some patients go into remission for no known reason.



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