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Fibromyalgia The Misunderstood Disease
June 1, 2007
Fourteen years ago, Josephine* began to experience severe pain
throughout her body. As her symptoms became worse, she sought help from
a variety of specialists, but no one could diagnose her condition.
“I was told they didn’t know what was wrong with me; the blood tests
came back good, x-rays came back clear,” she says. “They had no idea
and they’d shuffle me to another doctor, another specialist.” She saw
rheumatologists, neurologists, internists, and blood specialists, but
there was still no answer.
After more than a year, she was finally diagnosed with fibromyalgia, a
chronic and debilitating condition that causes severe pain throughout
the body. Ongoing research at the University of Michigan is
demonstrating that fibromyalgia may affect millions of Americans, and
research using sophisticated imaging techniques is helping the medical
community better understand this disease.
“Fibromyalgia is a condition that’s characterized by widespread pain
involving the muscles, the joints, and in fact, any area of the body,”
explains Daniel Clauw, M.D., director of the U-M Chronic Pain and
Fatigue Research Center. “In addition to pain, individuals with
fibromyalgia often experience sleep fatigue, difficulties with sleep,
and difficulties with memory and concentration, among other symptoms.”
Josephine’s symptoms included extreme fatigue, recurring headaches,
chest pains, stomach and intestinal problems, muscle fatigue and
weakness, restricted mobility, and anxiety. At her worst point,
Josephine was bed-ridden and medicated to the point that she wasn’t
functioning due to the pain.
However, there is hope. “Fibromyalgia is gaining respect in both the
scientific and the lay community because of all the research that’s
been conducted – first, showing that it’s a real disease, and second,
showing that there are drugs that specifically work to treat
fibromyalgia,” Clauw says. “Our group and others at the University of
Michigan have been very involved in looking at the underlying
mechanisms of fibromyalgia.”
Clauw and his colleagues use a technique called functional imaging,
which allows scientists to look at how different areas of the brain
function when people are given painful stimuli. What they have found is
that for the same amount of damage or inflammation in the peripheral
tissues, a fibromyalgia patient would feel significantly more pain than
the average person. Patients with fibromyalgia can also experience pain
throughout their entire body even without any damage or inflammation of
the peripheral tissues.
“We think that one of the primary abnormalities in fibromyalgia is an
imbalance between the levels of neurotransmitters in the brain that
affect pain sensitivity,” Clauw says. With this knowledge, new
treatments are being developed to combat the condition’s symptoms.
“Although right now there are no drugs approved to treat fibromyalgia,
within three years it its likely that there will be three, if not four,
drugs specifically approved to treat the condition,” he says.
These drugs fall into two general classes. One class raises the levels
of neurotransmitters that normally stop the spread of pain, while
another class lowers the levels of neurotransmitters that normally
increase the spread of pain.
The American College of Rheumatology estimates that about 3 percent of
Americans suffer from fibromyalgia, but Clauw notes that this may not
accurately reflect the number of people with this condition. “It’s
widely agreed that their definition is very restrictive. In fact, it’s
probably more like 5 or 6 percent of Americans,” he says.
There are other misunderstandings about fibromyalgia.
Some physicians believe that its symptoms are all psychological. “The
doctors say, ‘Well it’s all in your head, you just need to get some
extra rest and you’ll be fine, toughen up,’” Josephine remembers.
Another misconception about the disease is that it is caused by
inflammation in the muscles. Doctors now know that neither of these
theories is true. “This is not an inflammatory disorder and this is not
a primary psychological condition,” Clauw clarifies. “Pain is always a
subjective matter, but everything that we can measure about the pain in
fibromyalgia shows that it is real.”
Unfortunately, patients are often misdiagnosed as
having disorders such as rheumatoid arthritis, chronic fatigue
syndrome, or irritable bowel syndrome. Fibromyalgia has no definitive
diagnosis, so doctors must rely on a patient’s medical history and
symptoms when diagnosing the illness, excluding conditions that might
cause similar amounts of widespread pain.
The condition’s cause is still unknown, although it is
probably a combination of genetics and environment. “A person is about
eight times more likely to develop fibromyalgia if one of their
relatives has it,” says Clauw. “But there are also certain
environmental triggers. For example, people develop fibromyalgia after
motor vehicle accidents, or after certain types of infections or
biological stress,” he continues. Although the disease is more common
in women, there are no real demographic factors that can predict its
Clauw recommends that anyone who experiences pain or
fatigue that is severe enough to inhibit day to day functioning seek
medical attention, even if the symptoms have only lasted a couple of
days. “It’s better to get medical attention and appropriate treatment
early for this condition,” he says.
As for Josephine, maintaining a positive attitude and
acknowledging and accepting the disease has helped her live a more
normal life. “I know that I will always have this disease, but now I
see myself as a survivor,” she says.
* Not her real name
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