Linked to Central Nervous System Abnormality
I read the fascinating article below at http://www.floridatoday.com around 2005. (The link has since been disabled since they reorganized their site.) The article explains so well what I experienced with fibromyalgia - the strange symptoms, the misunderstanding of others - especially during the first decade of my illness. My personal FMS story is at www.fms-help.com/fibro.htm. - Dominie
Fibromyalgia Linked to Central Nervous
"Throw out a word like fibromyalgia, and you'll get
this blank stare," the 28-year-old said recently, sitting in her Santa Monica,
Calif., apartment. "For so long, it was my own private battle."
Today, however, Armistead is slowly, tentatively
opening up about a disease that is simultaneously emerging from its own
mysterious black box.
A groundswell of research has begun to expose the
underpinnings of the baffling disorder that affects an estimated 6 million to 10
million Americans, most of them women. Not only do the findings have the
potential to ease the condition's stigma, they also may provide clues to other
illnesses for which there is no clear clause.
Fibromyalgia, experts now believe, is a
pain-processing disorder -- arising in the brain and spinal cord -- that
disrupts the ways the body perceives and communicates pain.
"There was a time when it was thought to be
psychosomatic," said Dr. Robert Bennett, a fibromyalgia expert at Oregon Health
& Science University in Portland. "We now understand the pain in
fibromyalgia is an abnormality in the central nervous system in which pain
sensations are amplified."
Now, doctors are more likely to acknowledge
fibromyalgia as a real illness. Because patients are being diagnosed and
referred to specialists more quickly, they're finding relief, and acceptance,
easier to come by.
Pharmaceutical companies have jumped on the new
theory of the disorder, too. The first prescription drug approved specifically
for fibromyalgia will likely be approved late next year or early in 2007, and at
least half a dozen pharmaceutical companies are developing other treatments.
Meanwhile, the federal government is funding 10 studies of the
"It's very rewarding," said Dr. Stuart Silverman,
medical director of Cedars-Sinai Medical Center's Fibromyalgia Rehab Program in
Los Angeles. "I was seeing patients before because no one else wanted to see
them. Patients would tell me, 'Everyone has told me there is nothing I can do.'
Fibromyalgia typically is defined as unremitting
pain in multiple areas of the body -- at least 11 of 18 specific tender points
-- accompanied by fatigue, difficulties with concentration and other vague
physical discomforts. The illness is called a syndrome because the cluster of
symptoms lacks the clear markers of disease, such as changes in the blood or
Because patients often look healthy, doctors
sometimes have diagnosed fibromyalgia as a muscle problem or an autoimmune
disorder. It also can be a "wastebasket" diagnosis, attached to people with
inexplicable pain problems. Some have even dismissed it as the complaints of
emotionally troubled women.
Many fibromyalgia patients spend years seeking help
for their symptoms -- even after receiving a diagnosis. Always athletic,
Armistead first experienced back pain when she was a child, but she assumed the
discomfort was a part of playing sports.
By the time she had joined the UCLA volleyball team
in the mid-1990s, however, Armistead knew something was seriously wrong. After
games, she would be racked with pain. She sometimes took as many as 15
over-the-counter pain pills a day.
Coaches and trainers, alarmed at her use of
painkillers, insisted she undergo medical tests. Over a year, Armistead saw
numerous doctors but got no answers.
"Eventually everyone started doubting whether or
not I was really in pain," she said. "My coach couldn't understand how I could
play one day and be bedridden the next."
Debilitated by pain and fatigue, Armistead quit the
team and began to cut back on classes. She lost 35 pounds in eight months. It
was a time in her life "so painful, I've tuned a lot of it out."
In 1996, however, a doctor diagnosed her problem as
ankylosing spondylitis, a type of arthritis affecting the spine, and
Today, Armistead takes an arthritis medication, two
sleep medications, vitamins and herbs. She undergoes acupuncture, exercises
moderately and works only a few hours each day doing freelance
"With each passing year I've accepted the cards
I've been dealt," she said. "I'm not giving up. I keep trying new
Armistead, like many fibromyalgia patients, is a
long way from being pain-free. But the new research on fibromyalgia's causes
offers a blueprint for more effective treatments.
Fibromyalgia is now thought to arise from
miscommunication among nerve impulses in the central nervous system, in other
words, the brain and spinal cord. This "central sensitization" theory is
described in detail this month in a supplement of the Journal of Rheumatology.
The neurons, which send messages to the brain, become excitable, exaggerating
the pain sensation, researchers have found.
As a result, fibromyalgia patients feel intense
pain when they should feel only mild fatigue or discomfort -- such as after
hauling bags of groceries. They sometimes feel pain even when there is no
"The pain of fibromyalgia is not occurring because
of some injury or inflammation of the muscles or joints," said Dr. Daniel Clauw,
a fibromyalgia researcher and director of the Center for the Advancement of
Clinical Research at the University of Michigan. "There is something wrong with
the way the central nervous system is processing pain from the peripheral
tissues. It's over-amplifying the pain."
Recent studies show multiple triggers for the
amped-up response to pain. Fibromyalgia patients have, for instance, elevated
levels of substance P, a neurotransmitter found in the spinal cord that is
involved in communicating pain signals.
They also appear to have lower levels of substances
that diminish the pain sensation, such as the brain chemicals serotonin,
norepinephrine and dopamine. Growth hormone, which helps promote bone and muscle
repair, also is found in lower levels in fibromyalgia patients.
Medications approved specifically for fibromyalgia
will dramatically change treatment, Silverman predicts.
"Fibromyalgia will get a lot more respect," he
said. "People will think there must be a disease if there is a medicine for it.
It must be treatable."
Others aren't so sure, however. Many questions
about central pain disorders remain, including why some people are afflicted and
not others; why symptoms can vary so widely among patients; and whether the
emerging chemical markers -- high levels of substance P and low levels of
serotonin and norepinephrine -- cause the exaggerated pain or are its
This perception of fibromyalgia, while falling out
of favor among many doctors, nevertheless strikes a nerve in patients and among
doctors specializing in its treatment.
Fibromyalgia patients are difficult to treat,
Bennett said, requiring much time and attention. Some patients never get better,
although about 80 percent improve with a dedicated treatment plan and lifestyle
modifications, he said.
"There is no recipe for treating fibromyalgia
patients. The treatments have to be fully individualized, and that takes a lot
of time," Bennett said. "Most patients aren't getting the treatment they
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1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort
them which are in any trouble, by the comfort wherewith we ourselves are
comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue
Syndrome sufferers and their families.
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