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A real pain: Local patients struggle with fibromyalgia

POSTED: May 21, 2008 5:01 a.m.
MICHAEL PHILLIPS/ The Times

Tammy McCord of Gainesville suffers from fibromyalgia, a painful neuromuscular disorder. She also works as a massage therapist and helps other fibromyalgia patients cope with their pain.

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Ever have a bad case of the flu that made your muscles ache all over?

That’s what it feels like to have fibromyalgia. But for most people with this neuromuscular disorder, the pain never goes away.

They also experience debilitating fatigue, sleep disturbances and a variety of other symptoms.

What’s worse, many patients have been told that the problem is "all in your head."

"I think in the past, doctors brushed it off like it didn’t exist," said Gainesville resident Tammy McCord, who suffers from the disorder. "But just in the last year, I’ve noticed that people seem to be taking this more seriously."

What changed was that in June 2007, the Food and Drug Administration approved the first drug to treat fibromyalgia.

Karen Bullington, a physician with the Fibromyalgia & Fatigue Center in Atlanta, said Lyrica was originally approved as an anti-seizure medication.

"But it’s been used as an off-label drug to treat fibromyalgia for years," she said. "Lyrica is very effective in a large percentage of fibromyalgia patients. It helps with both pain and sleep."

Yet even patients whose symptoms aren’t relieved by Lyrica are still benefiting from the advertising.

"It’s improved the awareness of fibromyalgia just by
having those commercials on TV," said Bullington. "It’s like it’s been legitimized."

Scientists search for clues

You can hardly blame doctors for being skeptical. Until recently, there was no physical evidence for the existence of fibromyalgia. It can’t be detected through blood work or imaging tests.

Diagnosis is usually made after excluding other possible causes, such as lupus or rheumatoid arthritis. The main diagnostic criterion is that the patient must have "tender points" on at least 11 of 18 specific sites on the body.

Because fibromyalgia is difficult to identify, there are no accurate statistics on how many Americans have it. The National Institutes of Health estimates that 3 to 6 million people may be affected, though some researchers believe the number is much higher. Up to 90 percent of the patients are women, with an average age of onset between 30 and 50.

Initially, fibromyalgia was categorized as a form of arthritis, a disease treated by rheumatologists. But unlike arthritis, fibromyalgia doesn’t cause any inflammation in the joints or muscles. With no sign of tissue damage, doctors couldn’t figure out why patients were hurting.

Now, researchers think they may have found some answers. Fibromyalgia patients appear to have a number of abnormalities in metabolism, hormones and brain chemicals.

Of particular interest is "substance P," a chemical involved in pain perception. Studies show that people with fibromyalgia have three times the normal level of this substance in their cerebrospinal fluid.

A nervous system in "hyperdrive"

That could explain why something that causes little or no pain to the average person may feel excruciating to a person with fibromyalgia.

Some researchers also believe that these patients overreact not just to pain, but to other sensory stimuli such as noise, odors, and bright lights.

"Your central nervous system goes into hyperdrive," said McCord, 48. "I had to quit going to a church that had really loud music. I felt overwhelmed, like some people do when they go into a dance club that has strobe lights."

But what can a doctor do for a patient who complains about loud noises?

"Patients may get labeled as hypochrondriac, because this is a complex disorder," Bullington said.

In addition to pain, patients may have a whole litany of symptoms that seem unrelated. Bullington said a significant percentage have irritable bowel syndrome. It’s also common to have cognitive problems, such as forgetfulness and difficulty concentrating.

"And patients fatigue quickly with minimal exertion," she said. "They may perform OK on an exercise test, but the next day, they’re in bed."

Though bedridden from pain and stiffness, they’re probably not sleeping. Bullington said one hallmark of fibromyalgia is a disrupted sleep cycle.

"Even when patients sleep through the night, they wake up feeling like they didn’t sleep," she said. "A lot of them never go into the deepest, restorative stages of sleep."

Bullington said sleep disturbances are "just one piece of the puzzle" of fibromyalgia. But researchers still haven’t pinpointed an element that ties all these pieces together.

"The question is, ‘Can there be one thing that’s gone wrong inside these patients, and if you could fix that one thing, would it fix everything else?’" she said.

Genetics may play a role

No one knows what causes fibromyalgia, but Bullington said researchers have identified a set of genes that seem to be associated with the disorder.

"There’s a genetic component, but then there’s usually something that triggers it," she said.

Most patients say that their symptoms began after a traumatic event, such as a severe viral illness or a car accident.

Gainesville resident Denise Rissler, 52, said her illness developed about 20 years ago, while she was in a stressful family situation.

"I started getting a little stiff and felt like I needed to stretch a lot," she said. "Then I started having pain in the muscles of my shoulders and mid-back."

In the past few years, Rissler said, the nature of the pain has changed from soreness to a burning, stabbing sensation.

"It’s a tremendous amount of pain. It’s hard to describe to people," she said.

Rissler loved her job as a speech therapist, but in 2004, the pain forced her to cut her hours back to part-time. In February of this year, she finally quit altogether and applied for disability.

"For years, I was just trying to make it through each day," she said. "I felt like I had to keep working at my job, even though it was making me sicker, because I needed to keep my health insurance."

Rissler said she continues to exercise every day because it helps keep her body from stiffening up. But she dreads going to bed at night, because she knows she’ll barely be able to move in the morning.

"It takes me about three hours before I can function, because of all the stretches and pain-management routines I have to go through," she said. "This prevents me from doing any social events early in the morning."

Fibromyalgia often misdiagnosed as depression

Rissler said most of her encounters with the health care system have been frustrating. She said many doctors assumed that her problem was psychological.

"I went to one pain-management specialist who required me to go to a counselor before he would even see me," she said. "And of course I was depressed. Anybody who is in chronic pain eventually develops depression."

Bullington said that because anti-depressant drugs often do help relieve the pain of fibromyalgia, some doctors still think that fibromyalgia is really just a variant form of depression. But she said there’s a way to tell the difference.

"I ask patients, ‘Are there things that you want to do if you could?’" she said.

Bullington explained that a person with fibromyalgia usually wants to participate in activities but can’t because of the pain and fatigue. A person with true clinical depression, on the other hand, loses all enthusiasm for the things they used to enjoy.

But it’s hard not to be depressed if no one — not even your own family — believes that you are ill.

"A supportive family is like gold," said Bullington. "So many patients don’t have that, and it’s sad."

Support groups offer help

They can, however, get involved in a fibromyalgia support group. In Gainesville, there’s a group that meets at 2 p.m. every first and third Thursday at First United Methodist Church.

Organizer Anna Barnett said group members provide each other emotional support and share information about which treatments work best for them.

And that’s important, because the Internet is full of scam artists ready to prey on fibromyalgia patients.

"There’s a lot of charlatans out there," Barnett said. "They know that some people are desperate and will try anything."

Rissler said she gets by on a combination of exercise, Lyrica and pain medication, but her fibromyalgia still isn’t well-controlled.

"Alternative treatments (such as chiropractic) can help, but the relief is temporary," she said. "And the medications can make you feel like a zombie."

McCord, who does not have health insurance, is trying to treat herself through diet, mild exercise, warm showers and massage.

She also works as a massage therapist herself, so she understands exactly what her fibromyalgia patients need.

"I don’t do any real deep-tissue work on them, because I don’t want to put more stress on those muscles," she said.

McCord’s do-it-yourself approach makes sense in Gainesville, where there aren’t any local doctors who specialize in fibromyalgia. Those who live closer to metro Atlanta may want to try Bullington’s clinic in Marietta, which combines both traditional and complementary medicine.

"There is hope for this," Bullington said. "With treatments, patients can be symptom-free."

She doesn’t use the word "cure," however. "These patients will always have the genetic predisposition, so they could flare up again."

Rissler said her goal as a patient is to maintain a positive attitude despite the pain.

"It’s important to spend time with friends and not isolate yourself," she said. "Sometimes when you have a chronic disorder, you feel like you are your disease. You’re more than that. But you have to accept your limitations."



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