Fibromyalgia in the NEWS
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Millions with Fibromyalgia
Live in Uncertain Agony
September 23, 1999 By Adam Pasick
FOX News NEW YORK
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
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
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
"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
"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
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.
Largely because so little is known about fibromyalgia's cause, there is no magic
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
walk five minutes a day they already feel better."
Beyond treatment, fibromyalgia patients often discover that they need to revamp
Dr. Walpole, who was forced to give up her dental practice because of
fibromyalgia, said the condition forces patients to concede that their lives
"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
"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 alt.med.fibromyalgia 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
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
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."
FEATURES MAGAZINE / HEALTH & SCIENCE
PAIN THAT OFTEN DEFIES DIAGNOSIS
By Marie McCullough, INQUIRER STAFF WRITER
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
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
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 firstname.lastname@example.org
FIBROMYALGIA 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
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
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.
Copyright 2000 PHILADELPHIA NEWSPAPERS INC.
May not be reprinted without permission.