By P HyLLIS M C I NTOSH
or Jan cHaMBers of providence, utaH,
life has not been the same since she had major surgery at age 50
five years ago. “When I awoke from surgery,” she recalls, “I was
in a world of pain I didn’t know existed.” Other puzzling symptoms
—dizziness, involuntary muscle twitching, headaches, and mental cloudi-
ness—soon followed. The multitude of things that were going wrong
led doctors to consider a range of possible causes, including leukemia,
lymphoma, brain cancer, multiple sclerosis, and rheumatoid arthritis. It
was nearly a year before a rheumatologist finally diagnosed Chambers
with fibromyalgia, a chronic pain disorder that affects an estimated 10
million Americans, most commonly young or middle-aged women. She
would endure another five months of virtual immobility before finding
relief through various treatments, including therapy for cervical cord
compression, a condition that sometimes accompanies fibromyalgia.
Fibromyalgia is a maddeningly mysterious ailment. Its wide-
ranging symptoms may come and go, its cause is unclear, it
cannot be diagnosed via lab tests or imaging, and there is no
known cure. Furthermore, some in the medical establishment
question whether it really exists.
While the main symptom is pain and tenderness all over the
body, fibromyalgia also can cause moderate to severe fatigue,
sleep disturbances, mental “fogginess,” irritable bowel, head-
aches, anxiety, and depression. It often runs in families. Some
people, like Chambers, experience sudden onset following
physical or emotional trauma. In others, symptoms accumulate
slowly. Still others come down with “flu” that never goes away.
Some can never remember not hurting.
Aside from the multiplicity of symptoms, the greatest chal-
lenge is being taken seriously. “Doctors are shooting at a target
they cannot see,” says Patrick B. Wood, MD, a fibromyalgia
specialist at Pacific Rheumatology Associates in Renton, WA, and
senior medical adviser to the National Fibromyalgia Association.
“It’s a very human reaction to dismiss what we cannot understand
and over which we have little control.”
As both pelvic pain specialists and primary care physicians
for many women, ob-gyns are often on the front lines of dealing
with fibromyalgia. Howard T. Sharp, MD, director of the pelvic
pain clinic at the University of Utah in Salt Lake City, says he has
seen hundreds of women with fibromyalgia, most of them “frus-
trated because they’re not accepted by the medical community.”
Diagnosis and Treatment
While the disease remains controversial, several developments
are lending it more validity. In 1990, the American College
of Rheumatology (ACR)—rheumatologists by default are the
specialists most associated with fibromyalgia—issued diagnostic
criteria that most clinicians rely on today. These include a history
of widespread pain in all four quadrants of the body for at least
three months and pain in at least 11 of 18 designated tender
points when pressure is applied. These points, mapped out by
the ACR, are typically where muscle meets bone. “If I’m seeing
a patient with pelvic pain and everything hurts, that raises the
flag that maybe this is fibromyalgia,” says Sharp.
Medical treatment so far is limited to reducing the debilitat-
ing pain, which can severely interfere with daily activities. In
the past two years, the US Food and Drug Administration has
approved three drugs for fibromyalgia. The first, in June 2007,
was the now widely-advertised Lyrica® (pregabalin), an anti-
seizure medication. That was followed by two anti-depressants,
Cymbalta® (duloxetine) in June 2008 and Savella® (milnacip-
ran) in January 2009.
Whether you suspect you may have fibromyalgia or
have already been diagnosed but struggle to find relief,
remember that you are your own best advocate.
“About 30 percent of patients on any one of those three and orderliness, Wood says. Or, since fibromyalgia is believed
drugs will get about a 50 percent reduction in pain,” says Wood. to be a stress-related disorder, it could be the other way around:
“About 30 percent may get a limited reduction and have side Type As have an underlying drive that exposes them to more
effects that limit mobility, and another 30 percent have side stressful situations, and the stress in turn causes a dopamine
effects that make them unable to continue.” deficiency.
Many patients get some relief from other therapies, such
as supervised light aerobics including warm water aerobics, Be Your Own Advocate
cognitive-behavioral therapy, relaxation techniques, acupuncture, Whether you suspect you may have fibromyalgia or have
and lifestyle changes. already been diagnosed but struggle to find relief, remem-
ber that you are your own best advocate. Some important
Promising Research steps you can take:
Most exciting is new brain research, which one day may ■ Be persistent. Get in touch with a local or national support
lead to more definitive diagnosis and treatment. Wood, who organization, such as the National Fibromyalgia Association,
has conducted some of the research, says the most exciting which may be able to help you find “fibro-friendly” physi-
finding is that fibromyalgia patients “don’t seem to make as cians in your community who take the condition seriously.
much dopamine, the brain’s primary pain killer, as the next ■ Educate yourself. Find out as much as you can about fibro-
person, and they don’t release it appropriately in response to myalgia, which will give you credibility as you seek a diagnosis
painful stimulation.” or treatment, says Chambers, who is now a volunteer patient
He adds, “There’s also a lot of data supporting atrophic advocate active with the National Fibromyalgia Association.
changes, loss of gray matter density, in some key areas of the She adds that you will likely find yourself educating inter-
brain related to symptoms patients experience, such as increased nists, physical therapists, or other health personnel about
pain, difficulty with thinking and concentration, and abnormal the disease as you go along.
response to stress.” So far, however, these brain imaging find- ■ Keep copies of your test results and medical records.
ings have not found practical application in a clinical setting. Health care facilities do not necessarily store records for long
Wood is especially intrigued by the mental cloudiness, or periods, Chambers says, and you may need to refer back to
“fibro fog” as it’s sometimes known, that many patients experi- test results as you seek a diagnosis.
ence. “I’m beginning to suspect that some of what goes under ■ Be willing to try new treatments—and give them a chance
the rubric of fibro fog is simply adult ADHD (attention deficit to work. Side effects from medications are a fact of life,
hyperactivity disorder),” he says. “We treat children who have Wood says, so don’t give up on drugs before you know if
ADHD with medications that stimulate the release of dopamine, they work. Also, recognize that treatment for fibromyalgia
and there’s strong reason to believe there’s a dopamine abnor- is rarely one-stop shopping. “You need a team approach,”
mality related to fibromyalgia. So it seems natural that the two Chambers says. “There might be neurological, chiropractic,
might overlap.” and psychological aspects to your treatment.”
According to Wood, a number of his patients have first degree ■ Remember that you are not alone. Finding or starting an
relatives, sons or brothers, who have ADHD. Interestingly, other education support group can be especially valuable. “So many
dopamine related problems, such as restless legs syndrome, are people associate the words ‘support group’ with whining
common both in people with ADHD and in those with fibro- or commiserating, but there’s so much more you can do,”
myalgia, which may mean that all these conditions are various Chambers says. “We teach coping skills and share good
manifestations of a dopamine deficiency. positive information with each other.”
Dopamine also may explain why fibromyalgia is more preva- With fibromyalgia as with other chronic conditions, Chambers
lent among perfectionist, Type A personalities. It’s possible that concludes, learning to take back control of your life is an impor-
low dopamine is associated with such characteristics as rigidity tant step toward healing. p