By
Leslie Goldman, Woman's Day
In
2001, Emily Shaules was an active, happy 25-year-old lawyer living in
Chicago when a casual toss of her hair triggered a sudden, excruciating
snap in her neck. Fearing she might have torn something or given herself
whiplash, she headed to the emergency room, where she was diagnosed
with a pulled muscle, prescribed Vicodin, and assured her symptoms would
blow over in a week. Instead, the pain began to radiate throughout her
body. A month later, she could no longer bear to hug her boyfriend.
"Imagine if someone chopped off your finger," she says. "I felt that
level of pain, everywhere."
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Doctors
tested Emily for everything from bulging disks and hypothyroidism to
lupus and multiple sclerosis—all came back negative. By 2003, she
couldn't pick up her 12-pound dog, she had been let go from her job for
failing to keep up with the demands, and her relationship was over. "I
remember praying that a scan would show a brain tumor, because at least
then I would have a concrete diagnosis," she says. "When no medication
will even touch your pain, but all the doctors say nothing is wrong, you
start to think you're insane."
Emily
wasn't imagining things. She was finally given an answer: fibromyalgia,
a chronic condition with symptoms including widespread pain and
tenderness, disrupted sleep, and memory and cognitive troubles (also
called "fibro fog"). Six million to 10 million Americans are thought to
suffer from fibromyalgia, and the majority are female. But there's
enormous confusion over what fibromyalgia truly is, and no reliable
diagnostic tests or cures exist. As a result, women often hear their
doctor say something along the lines of what Emily heard: "You'll just
have to get used to the pain."
How it all begins
Many
experts believe fibromyalgia is triggered by a physical or emotional
trauma— a car crash, a divorce, a sexual assault—that sends the body
into fight-or-flight mode. But even something as simple as Emily's twist
of her head can bring it on. "Normally, the sympathetic nervous system
turns on to prepare the body for a stressful situation, tightening the
muscles and connective tissue to increase their strength, then shutting
off when the threat is gone," says Ginevra Liptan, M.D., author of The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor. But with fibromyalgia, the brain gets stuck and the stress response never stops, like a smoke alarm sounding without a fire.
Obese fibromyalgia patients report more medical problems, take more
medications, and are more prone to depressive symptoms than patients of a
healthier weight.
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Over
time, a chronically activated sympathetic nervous system can cause
chaos throughout the body, keeping muscles tense (leading to pain and
tenderness), preventing deep sleep, and ultimately prompting
pain-sensing nerves to crank up their signals.
A difficult diagnosis
With
well-recognized conditions like cancer and diabetes, doctors have tools
like biopsies and blood glucose tests to help make a concrete
diagnosis. With fibromyalgia, many doctors are still using criteria that
originated in 1990, which calls for them to press on 18 spots
(including specific points on the neck, elbows, back, and knees). "If
the patient is tender in 11 of the 18 spots, and other causes have been
ruled out, you diagnose them with fibromyalgia," says Dr. Liptan. In
2010, the American College of Rheumatology stopped recommending the
tender-spot exam because of its subjective nature (a patient may feel
sore in 13 spots one day and only 10 the next) and added "fatigue" and
"brain fog" to the criteria—along with allover pain lasting three to six
months that can't be explained by another diagnosis.
Complicating
matters, fibromyalgia often coexists with other conditions, like
irritable bowel syndrome and migraines. (Doctors focusing on these
conditions may miss fibromyalgia.)
Once
a diagnosis is finally made—studies show that the process usually takes
between two and 10 years—patients must still contend with the fact that
"some people mistakenly believe fibromyalgia is a psychological disease
and that it's 'all in your head,' " says Tarvez Tucker, M.D., professor
of neurology at Oregon Health and Sciences University in Portland.
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Why women?
Although
the role of estrogen in pain syndromes is complex, higher levels of
estrogen during pregnancy can be protective against childbirth pain. In
contrast, when estrogen levels are low, such as at the onset of the
menstrual cycle or in menopause, many women experience more sensitivity
to pain.
Not
surprisingly, fibromyalgia often shows up in women between ages 40 and
55. And sufferers still in their childbearing years often say their pain
worsens just before and during their periods, when estrogen nosedives.
There's a genetic component too: Fibromyalgia tends to run in families.
Searching for relief
A
handful of medications attempt to dull pain signals in the brain, but
they don't seem to improve other fibromyalgia symptoms like fatigue or
brain fog. Antidepressants may help, because the pain and mood centers
of the brain overlap, so treating the latter, even in depression-free
patients, can sometimes improve pain.
For
Servanne Edlund, 40, a mom of two from Silver Lake, MN, a combination
of a nerve-blocking drug and an antidepressant helped lift the pain that
led to her diagnosis five years ago. "I felt better almost
immediately—more energy, improved sleep, and less pain," she says. "I
started walking as much as two miles every morning. Before medication, I
couldn't get down the stairs." Certain lifestyle changes hold promise
too. (See sidebar, left.)
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For
Emily, now 41 and living in Asheville, NC, relief came through a
combination of diet and mind-body relaxation techniques. She follows an
anti-inflammatory diet filled with fruits, vegetables, and fish,
meditates 10 to 15 minutes a day, and sleeps eight hours a night. "The
pain has lessened immensely, plus the meditation helps lengthen my fuse,
so I don't get upset at little things that used to bother me when I was
in pain," she says. "I've learned that there can be health and
happiness after fibromyalgia."
REDUCE THE PAIN
Try these strategies for coping.
- Get moving. A recent Annals of Rheumatic Diseases review of nearly 400 studies found that exercise reduced pain in people with fibromyalgia more than medications or other treatments. Gentle cardio like walking eases pain, improves sleep, lessens fatigue, and helps you shed pounds; weight-bearing activity strengthens muscles; and stretching increases range of motion.
- Find a release. Fibromyalgia can cause painful knots in muscles and fascia (the connective tissue around muscles). Myofascial release is a technique in which a practitioner slowly stretches your fascia, similar to stretching a piece of taffy. This can speed healing and lower inflammation. To find a provider, go to mfrtherapists.com.
- Cut out certain foods. Dairy and gluten can be highly inflammatory for some people (eggs, corn, and soy can too). Eliminate them for three to six months to see if there's any improvement and to help you detect what may be a trigger.
- Just breathe. Light forms of yoga help your muscles relax. If you have fibromyalgia, avoid variations that have "power" or "hot" in the name—these types can actually aggravate symptoms.
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