Like Chronic Pain, Fibromyalgia Debate Persists

While patients insist the pain condition is real, some doctors remain skeptical.

Jan. 16, 2008— -- The pain struck Frances Bremer while she made lunch.

Two sandwiches, two apples, and cookies went into ordinary brown paper bags for her children. Suddenly, Bremer became aware that the small, jagged edges at the opening of each bag were so painful to the touch that she could not finish preparing the lunches.

"I couldn't put my hands in the bag or fold it up," Bremer said.

Bremer, the 65-year-old wife of former United States ambassador to Iraq Paul Bremer, was feeling the first pangs of what doctors now call fibromyalgia. It is a condition characterized by chronic migratory pain and sensitivity, often accompanied by chronic fatigue syndrome, irritable bowel syndrome, and poor sleep.

No one knows the cause of fibromyalgia, and some now question whether the combination of symptoms adds up to a disease. The debate has intensified since last year, when drug giant Pfizer launched a campaign to promote Lyrica, the first drug approved by the U.S. Food and Drug Administration (FDA) to treat fibromyalgia.

Critics say there is no reason to classify fibromyalgia as a disease.

"There is no such thing as a fibromyalgia person," said Dr. Nortin Hadler, professor of medicine at the University of North Carolina's school of medicine in Chapel Hill. "The issue is not is it real... the issue is, are they diseased so that we need to fix their biochemistry or their minds. It's fairly counterintuitive."

Suffering in Silence

Fibromyalgia can be difficult to diagnose -- which becomes a problem when patients feel their pain is not being taken seriously.

"These people get a bad rap," said Dr. Doris Cope, professor and vice chair for pain medicine at the University of Pittsburgh School of Medicine's department of anesthesiology. "Doctors think this person is goofy because the pain kind of moves around."

Dr. Cheryl Bernstein, assistant professor of anesthesiology at the University of Pittsburgh, said a doctor's skepticism may stem from their lack of exposure to patients with fibromyalgia. Though individual instances of pain may sound commonplace, "the emotions expressed are very similar and the stories tend to be very consistent," she said. "It is hard to ignore it once you see it over and over again."

Still, it may not be surprising that some doctors are slow to recognize the symptoms of the condition. Fibromyalgia has only been part of the medical lexicon for about 15 years. Its causes are murky and have been linked to physical or emotional trauma, such as a car accident.

About 3.7 million people in the U.S. have fibromyalgia, according to the Centers for Disease Control and Prevention (CDC). Middle-aged women are particularly susceptible, but pain can strike at almost any age, with some reported cases occurring in patients as young as 8.

Bremer said she began to experience chronic pain in her 30s.

"My clothes began to hurt," Bremer said. "I would lie in bed and then change from one nightgown to another ... It was like my blood was on fire."

The Drug Debate

Prolonged exposure to pain alters how the brain processes pain signals from the body, causing it to become sensitive to the lightest touch. This is one of the reasons that over-the-counter pain relievers like aspirin and ibuprofen do not have much effect on patients with fibromyalgia.

Doctors have turned to drugs like Lyrica, whose generic name is pregabalin, to treat such people with more success. These drugs work to stabilize some of the brain chemicals which are involved with pain perception, like epinephrine and serotonin. In the past, antidepressants and anti-seizure drugs have been used to successfully treat fibromyalgia, Cope said.

Hadler is not convinced, however, that drugs like Lyrica are the answer to fibromyalgia.

"It is not a very impressive drug for me," Hadler said, citing what he says are flaws in the study. "Unfortunately, they are waiting with bated breath [for a cure] and cannot get well until the thing is found."

Though Lyrica does have some serious side effects, including weight gain, difficulty concentrating, and swelling, it has been an effective treatment for many.

"While our understanding of this disease is poor, there clearly is a group of patients who benefit from this treatment and who should be allowed to use it while weighing the risks and benefits," said Dr. Carol Warfield, chief of anesthesia at Beth Israel Deaconess Medical Center in Boston and a consultant to the ABC News OnCall+ Pain Management section.

Doctors agree that the best way to deal with fibromyalgia is to combine medication with exercise and stretching, behavioral modification, and relaxation techniques.

"If you treat it properly ... patients do very well," Bernstein said.

Bremer said she has learned to cope with fibromyalgia with a regime that includes Lyrica, a few other medications, light exercise, massage, and naps. But she added that the condition continues to affect her and her family.

"You kind of learn that it's not going to go away entirely," Bremer said. Still, she has decided to use her experiences for a positive cause. She and her husband are currently spokespeople for the National Fibromyalgia Association.

"This condition has made me a better person," she said. "I'm not sorry I got it."