Debate over Fibromyalgia

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http://www.msnbc.com/news/347373.asp

Debate over Fibromyalgia

Mysterious disease getting attention

Suzanne battles fibromyalgia, a disease that affects millions.

Jan. 4— Imagine suffering for months from constant pain, yet doctors can’t

find anything wrong with you. Finally, someone does make a diagnosis, but it

’s a disorder you’ve never heard of — one surrounded in mystery and some

controversy. Think we’re talking about some rare disease? Not at all. This

affects millions of Americans. Shriver reports.

“My whole body hurts—from head to toe.”

— SUZANNE MILLER

Fibromyalgia sufferer

“I LOVED MY life,” says Suzanne . “I loved my house, my husband, you

know, my kids. I had a great life. It was fun. I mean, I was so proud of

myself for doing what other 48-year-old women don’t usually do.”

For Suzanne two years ago, that was largely due to confidence in her

physical prowess, working out constantly and training for black belt karate

competition. Athletic her entire life, she was a horseback rider, a swimmer,

a biker, a hiker, a marathon runner and a body builder. On the side, she was

also a wife, a mother of three, not to mention a full-time recovery room

nurse.

But that was Suzanne’s life then. Today, there are days she needs a cane or

has to spend most of her time in bed. She no longer works as a nurse and is

on anti-depressants. It is her life with fibromyalgia. The diagnosis came

after Suzanne couldn’t seem to recover from whiplash brought on by a car

accident.

“I’m not one to run to the doctor,” says Suzanne. “So it was probably a

month that went by. And so I went in and I said I have this aching. You

know, what’s going on? I feel like I have a bad case of the flu. And that’s

what I kept thinking — I was getting the flu.”

But it was a flu with no fever for which all medical tests kept

coming up negative, until the doctor pushed certain nerve centers on her

body.

“He was an internist,” says Suzanne. “He checked for the tender

points. And he said, ‘You have fibromaylgia. Seek a support group. You will

have it for the rest of your life.’ And I went, ‘fibro what?’ I had never

heard the word before.”

Even as a nurse, she had never heard about fibromyalgia.

Dr. , who heads the Rheumatology Department at Oregon’s

Health Sciences University, site of one of the largest research studies into

fibromyalgia, says Suzanne is far from alone with this diagnosis.

“If we’re talking about the United States,” says Dr. ,

“probably around 6 million people.”

Suzanne’ gets excrutiating shots deep into her sensitive tender points. She

takes 23 pills a day to ease her pain, fight insomnia and combat the

depression that so often accompanies fibromyalgia.

Since 1990, when the American College of Rheumatology gave it a

name and set out criteria for its diagnosis, fibromyalgia has become the

third-leading reason Americans see arthritis specialists, or

rheumatologists. But unlike arthritis, fibromyalgia isn’t a degenerating

bone or joint problem. In fact it’s still a medical mystery. It’s even the

subject of a heated medical debate. There is no test, no known cause, no

cure — just a diagnosis of pain.

“My whole body hurts,” says Suzanne. “From head to toe.”

Suzanne was diagnosed with fibromyalgia because she had constant pain

for more than three months in three of the four quadrants of her body. She

also had pain in more than 11 of 18 places on her body identified as “tender

points.”

Suzanne’ gets excrutiating shots deep into her sensitive tender points. She

takes 23 pills a day to ease her pain, fight insomnia and combat the

depression that so often accompanies fibromyalgia. All this, despite the

fact that doctors admit they can’t see anything physically wrong with her.

“Patients complain about joints hurting,” says Dr. , “but actually

the pain is not coming from the joints. They do not have arthritis. Patients

with fibromyalgia seem to have an abnormality in their processing of pain

signals.”

Doctors used to think that fibromyalgia, or what was called “fibrositis”

until 1990, was a muscular problem. Now they theorize it’s a problem of the

brain and central nervous system amplifying the sensation of pain.

Researchers aren’t sure why, but point to studies that show those with

fibromyalgia have slightly lower than normal levels of the hormone seratonin

and higher than normal levels of Substance P, a hormone used in transmitting

pain signals.

Nor are experts clear on what brings on fibromyalgia, except that is usually

diagnosed after someone has been exposed to severe stress — either medical,

such as infection, or emotional. And Dr. says almost a third of his

patients can trace back their symptoms to physical trauma, as in Suzanne’s

case, to a car accident.

“We’re looking for a narrowing at the top part of the neck called the

cervical spine,” says Dr. . “We’re also looking for a crowding at the

base of the brain.”

Dr. suspects certain people may be predisposed to the illness

because of their brain structure and chemistry and their age. Most new

patients are between 35 and 60. And because they’re women. Almost eight

times as many women as men have fibromylgia.

“Some things seem to be inherent in being a woman that makes you more

likely to get chronic pain problems,” he says. “And it is not just hormonal,

because I see teenagers with it. I see post-menopausal women who get it and

get put on estrogens and they still have pain.”

“The worst part for me when she is feeling bad is that I can’t even

hug her,” says Suzanne’s husband Tom. He says it’s sad watching his wife in

such pain. Everything in her life has changed—even the way she speaks.

“There are just these long, blank pauses,” he says. “It’s a little

frightening because you wonder how far that will go.”

Suzanne agrees, “You forget a word that you used a million times.”

They call them “fibro-fogs.” Moments of losing a word or the thread

of a conversation. Doctors don’t know if this short term memory loss is due

to changes in brain chemistry or to lack of sleep, chronic pain and the use

of pain killers.

But in Suzanne’s support group, many complain of their frustration

with confused brain function.

Has Dr. Bennent been able to change the quality of life for people

who have severe fibromyalgia? “Some of them yes, and some of them no,” he

says. “Certainly patients who adopt a more positive attitude, get into an

exercise program, have depression adequately treated, have an improvement in

the quality of their life, yes.”

Do they have an elimination of their pain? “No,” says Dr. Bennent.

“There is nothing right now that we can do to eliminate the pain of

fibromyalgia.”

But while millions of Americans are seeking treatment for the

disorder, there is a portion of the medical establishment that contends

fibromyalgia is not just over-diagnosed, it downright doesn’t exist.

Dr. Bohr is a neurologist at Loma Medical Center who thinks the

theories on fibromyalgia are based on what he calls junk science—studies

that are inconclusive at best. “There’s no empiricism to fibromyalgia. Just

wild speculation.”

The schism in the medical community was visible when during a recent debate,

he managed to persuade some of his fellow neurologists that rheumatologists

like Dr. are making more of fibromyalgia than is warranted.

Dr. Bohr doesn’t argue patients don’t suffer real symptoms. He just thinks

they don’t have a specific medical disorder that is helped by giving it a

name or treating it medically. “It makes them feel crippled,” he says.

“Because they’re told there’s no cure and it lasts forever. It’s a bad

message to send to people who have problems with chronic pain.”

Bohr says that some doctors and support groups exacerbate the condition for

patients who suffer from pain by convincing them that they are invalids with

an incurable problem. He feels they are abetted by lawyers who sue for large

disability payments that encourage patients not to seek alternative

treatment.

“These folks are suffering,” says Dr. Bohr. “They aren’t crazy. They

have a huge burden of psychological conditions-depressions, anxiety, panic

disorders.”

Dr. acknowledges that many fibromyalgia patients suffer from

psychological problems. Suzanne, for instance, was on low levels of prozac

before the accident that now have been more than doubled. But he is angered

by critics who imply fibromyalgia is more mental than physical.

“At the time of diagnosis, only about thirty percent of fibromylagia

patients actually have depression,” says Dr. Bennent. “And when we treat

depression with prozac and similar drugs, these patients still have their

pain problems. Their pain does not go away.”

Suzanne acknowledges the pain does effect all of her life, including

her emotions. “I don’t want to spend the rest of my life like this,” she

says.

Dr. says the best hope for sufferers is a program involving

psychologists, pain management, occupational therapists and exercise

specialists—all focused on helping patients adjust to life with an

invisible, chronic condition that as of now has no cure in sight.

As for Suzanne, she says people around her can debate her illness all

they want. She’s concentrating on more personal battles. “It’s quite a thing

to lose your sense of self,” she says. “It’s quite an event. Every

relationship that you have changes. Your friends, your family. And so it’s a

whole grieving process that you go through.”

Looking for more information?

These Web sites can help

• National Fibromyalgia Awareness Network

Phone: (714)921-0150

• Fibromyalgia Network

Phone: (800)853-2929

• Oregon Fibromyalgia Foundation

• Arthritis Foundation

Phone: (800)283-7800

http://www.krafchick.com/ Legal Info for Persons Denied Disability Coverage