Fibromyalgia: The Misunderstood Disease
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 development.
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.
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