A Name For the Pain: FM Sufferers Are No Longer Alone

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A Name For the Pain: Fibromyalgia Sufferers Are No Longer Alone

By Mariko

Plagued by such extreme pain and fatigue that she couldn't leave her bed,

Lynne Matallana thought she had lost her mind. What she did lose was 2 1/2

years of her life. That's how much time passed before doctors finally

diagnosed her with fibromyalgia, a chronic illness in which the body's pain

response goes haywire.

Looking back, Matallana believes the trauma of waking up during a surgical

procedure triggered the fibromyalgia. Others also trace the onset of the

syndrome to a traumatic or painful event, including car accidents or a difficult

childbirth.

" If (doctors) take away the credibility of the illness, then people give up,'

says

Matallana, founder of the National Fibromyalgia Association based in Orange

County. " The damage that can be caused by being told the problem is

psychological is the most devastating thing that can happen to a person.'

Fibromyalgia once was dismissed by doctors as a phantom of the female

imagination. But scientific research into pain response has shed light on the

misunderstood syndrome and vindicated the 6 million Americans -- mainly

women and many of whom feared that they had gone crazy. About 10 percent

of fibromyalgia patients are men.

Multiple symptoms

The problem with fibromyalgia is invisibility. High cholesterol can be

measured in a blood test. A broken bone can be X-rayed. But doctors couldn't

see fibromyalgia with conventional methods and remained puzzled by the

array of symptoms, which besides widespread stiffness and aching often

included fatigue, headache, irritable bowel, sleeplessness and depression.

Validation came in 1990 when the American College of Rheumatology

established 18 tender points common in fibromyalgia and set criteria to help

diagnose the syndrome. By the mid-1990s, rat studies created a window into

the physiology of pain. When rats were stuck repeatedly in the thumb of their

paw, the pain response didn't remain limited to the thumb but soon spread to

the entire paw, says Dr. Stuart Silverman, founder and medical director of the

Fibromyalgia Outpatient Rehabilitation Program at Cedars-Sinai Medical

Center in Los Angeles.

In a normal pain response, pain signals travel up the spinal cord to the brain.

The brain then sends a chemical response to dampen the pain. But in

fibromyalgia patients, the pain signals overrun the brain's response. Those

pain signals traveling to the brain accelerate, while the brain's response

decelerates, Silverman says.

Hypersensitivity

These changes in neurochemistry not only explain the pain but why

fibromyalgia patients also suffer from overlapping syndromes, including

migraine, irritable bowel and chronic fatigue, says Dr. Muhammad Yunus,

professor of medicine at the University of Illinois College of Medicine in

Peoria. Yunus, who has researched fibromyalgia for more than 20 years, says

all of these conditions -- which afflict more women than men -- share a

neurochemical basis. He calls them central sensitization syndromes, meaning

patients are hypersensitive to any stimulus, not just pressure or touch but also

noise, light and weather.

" When you put them as a group, they are probably the most common reasons

a patient comes to a clinician,' Yunus says. " We need more funding and

attention. These conditions cost the whole nation a lot of money. They disrupt

lifestyle and family life.'

As the understanding of pain pathways has increased, pharmaceutical

companies have been spurred into action. Several companies are now

testing drugs to treat fibromyalgia and are racing to be the first to bring one

to

the market, Silverman says. A medication aimed specifically at fibromyalgia

would provide another tool in what is currently a multifaceted approach to

treatment.

One-stop relief

Because of range of symptoms, fibromyalgia patients could spend all of their

time visiting specialists -- one for the pain, another for gastrointestinal

distress, yet another for depression. Rather than have specialists tackle each

problem separately, some doctors have created patient-centered programs

with a team approach.

At Cedars-Sinai Medical Center in Los Angeles and Kaiser Permanente in

Woodland Hills, the programs emphasize education, teaching the patient to

take an active role in managing the syndrome, which waxes and wanes.

The Cedars-Sinai Fibromyalgia Rehab Program coordinates the patient's

medical care. The patient then attends group seminars over six weeks that

teach lifestyle changes and coping techniques. Components include

stretching and strengthening exercises, nutrition and sleep. " Because

fibromyalgia is all about increased hypersensitivity, they need to become

more hardy,' Silverman says. " If you are out of condition, even simple tasks

cause discomfort. Indian gurus who sleep on a bed of nails feel pain, too, but

they have trained their brains that it doesn't make a difference to them.

Fibromyalgia patients may still be in pain, but they can manage and cope with

it better.'

At Kaiser Permanente in Woodland Hills, fibromyalgia patients attend group

sessions for five weeks, where they meet with doctors, nutritionists, physical

therapists and social workers. On a recent day, physical therapist Cheryl Fish

led four women through gentle stretching and exercises designed to build up

trunk muscles. As they worked on an easier version of the sit-up, Kathleen

Weisel of Canoga laughed in frustration.

" I'm just thinking, 'This is terrible,' Weisel said, as she lay on her back,

head

propped on a pillow. 'I used to be in (the gym) every day. We need to

celebrate our small achievements,' " Fish reminded the group.

Feelings of frustration and loss are common among fibromyalgia patients.

During periods when they feel better, fibromyalgia patients often push

themselves too hard in the desire to return to normalcy, Matallana says. A

strong social network can help people weather the emotions that come with

the syndrome's ups and downs. Matallana encourages people to join one of

the local support groups, which her organization lists on its Web site.

" Moderation and common sense are important in dealing with fibromyalgia,'

Matallana says. 'Be kind to yourself.' " People with fibromyalgia no longer have

to fear the pain is all in their heads. The phantom is gone, shifting the focus

to

coping and the search for a cure.