Wednesday, September 23, 2009

Fibromyalgia - Reporter's File - The Long Search for Fibromyalgia Support - NY Times Health

Glenn Robinson was always physically affectionate with his wife,
Judy. But after she underwent abdominal surgery four years ago,
everything changed.

Long after the incision healed, Judy had pain in her hips, her lower
back, her legs, her muscles, her skin. When Glenn tried to tickle or
squeeze her, she would shy away. Hugs would elicit a grimace. "Don't
touch me; it hurts," she would say, backing off. Glenn reacted the
way any husband would. "I got angry," he said.

The couple's social life ground to a halt. Judy, 48, began begging
off picnics, barbecues and trips to the boat races at Belle Isle Park
in Detroit, where they live.

"We would make plans to get together with friends for dinner," said
Glenn, 50. "Come that day, beautiful weather, she wouldn't want to
leave the house."

There were days when Judy didn't even want to talk on the phone. And
though she soldiered through eight-hour workdays in the shipping and
receiving department of a leather company, she would take breaks to
sit in the bathroom and cry.

The Robinsons became desperate to find out what could possibly be
causing Judy's pain. M.R.I.'s turned up nothing more than a herniated
disc or osteoarthritis. Both can be excruciating, but neither could
account for the pains Judy felt all over her body. Her doctor
prescribed narcotics, but even those didn't help. It hurt to wash her
face. It hurt to raise her arm. It hurt to sleep. It still does.

"If you touch my back, it feels like it's all bruised," she said.
"Lately it's felt like electroshocks."

In March 2009, after four years of suffering, Judy finally found a
new doctor who could name her ailment: fibromyalgia.

If there is a circle of purgatory that Dante forgot, it might be the
one reserved for fibromyalgia sufferers. The problem isn't just
pervasive pain. It's the challenge of having a condition that is not
well understood. It doesn't help that there is no objective medical
test to confirm it — no blood test, no cheek swab, no X-ray — just a
patient's subjective reports. Nor does it help that there is no cure.
Many physicians don't want to be bothered with incurable patients.

If doctors don't sympathize, why would friends? How do you explain to
people that you have no broken bones or burns or even infections, yet
your body hurts all over? You look fine, yet beg off work and social
engagements. Are you a malingerer? Are you just trying to claim
disability? Are you simply crazy? And why don't you get better?

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