Fibromyalgia: Little understood, often frustrating

By Judy Fortin - CNN Medical Correspondent - Monday, July 14, 2008

ATLANTA, Georgia (CNN) -- You wouldn't know it by looking at her, but at any given moment Dana Poole hurts all over.

"It's kind of like a burning, but an ache. It's almost like you have the flu," said Poole, 31, a receptionist from Canton, Georgia.

Poole is one of almost 6 million Americans who suffer from a chronic condition called fibromyalgia.

In addition to widespread pain, patients may complain about fatigue and sleep disturbances, depression, headaches, irritable bowel syndrome and heightened sensitivity.

"Dana is typical of a lot of fibromyalgia patients," said Dr. Jefrey Lieberman, an Atlanta, Georgia-based rheumatologist. "She came into my office complaining of a lot of diffuse pain all over her body and fatigue. She really didn't know why she was getting it."

That's part of the frustration of having fibromyalgia. Experts aren't sure what causes it, but many believe many factors are involved.

Some think the condition, which is not progressive or life-threatening, may be triggered by an emotional or traumatic event.

Lieberman believed it is related to a disordered sleep pattern and poor exercise. "It appears to be more of a neuro-chemical process," he said. "In other words, there really is no inflammation in patients with fibromyalgia." Health Minute: More on identifying fibromyalgia »

Getting a proper diagnosis can sometimes be just as frustrating as finding out what's behind the disease.

"Fibromyalgia is to some extent a diagnosis of exclusion," Lieberman said. "There are lot of things it can be confused with such as thyroid disorders, metabolic disorders and certain rheumatologic inflammatory conditions."

For almost five years, Poole jumped from doctor to doctor trying to figure out what was causing her symptoms. "They were constantly saying I'm a tall, thin female. 'You're getting older -- your body is going to change,' and it was frustrating."

Lieberman understood Poole's frustration. "Sometimes fibromyalgia is used as a wastebasket term if a patient has pain and they don't know what it is from," he said. "It is frequently misdiagnosed. In fact, it is overdiagnosed and it is underdiagnosed."

Specialists such as Lieberman can make a proper diagnosis based on criteria set by the American College of Rheumatology.

"Those criteria are diffuse pain in three or more quadrants of the body and the presence of what are called tender points in the body," Lieberman explained. "There are 18 total tender points, and by definition we like to see 11 of those tender points being present."

It's estimated that up to 90 percent of patients are women. Most of them start feeling symptoms in early and middle adulthood.

Poole remembered that the pain first started when she was 20. It wasn't until she met Lieberman about five years ago that she got some relief.

She took part in a drug study for Cymbalta, one of two medications approved for the management of fibromyalgia. The other drug is called Lyrica.

"Both of them are geared toward the patient's well-being as well as improving their pain," Lieberman said.

He also encouraged Poole to control her condition through a healthy diet, stress reduction, getting enough sleep and regular low-impact exercise.

"We think that aerobic exercise helps to stimulate endorphins and enkephlins from the body which are your own natural pain relievers," Lieberman said.

The doctor is quick to point out that even with proper medication and adequate exercise, fibromyalgia has no cure.

Although Lieberman said some of his patients report the symptoms tapering off in their mid-50s and -60s, others are faced with years of managing the condition.

"For most of my patients, I tell them that I can get you 50 to 75 percent better and many of those patients will jump at that," he said.

Poole is one of them, but knowing that she'll need to follow a careful daily regimen can be daunting, she said. "It wears you out, mentally, physically and emotionally."



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New drug approved for Fibromyalgia patients

By MACIE JEPSON - WFAA-TV - Friday, June 22, 2007
As many as 13 percent of women in America have a neurological condition called Fibromyalgia and for the first time, the FDA has approved a drug that can help. It's called Lyrica.

Pamela Kennedy struggles everyday to take care of her toddler son.

"With Fibromyalgia, I've had pain for 15 years in all my joints," she said.

For many of those years, she's gotten relief from mind-altering pain pills that ease the muscular discomfort that she wakes up and goes to bed with everyday.

"If they could think of something I could take and be lucid all day and be a mom, that would be good."

The drug company Pfizer thinks it has. In clinical trials Lyrica was found to reduce pain, without the dangers of pain medication.

Lyrica decreased the release of neurotransmitters in the brain linked to the pain, fatigue and cognitive problems associated with Fibromyalgia. The disorder typically causes muscle pain, insomnia and stiffness.

Dr. John Harney already sees improvement in his patients.

"In about 200 of my patients over the last year and a half, I've found they have more energy, get into their exercise program more and pain drops about 50 percent. It's great news,"

he said.

Lyrica was already approved for treatment of tremors, migraines, muscular sclerosis and other neurological disorders.
Lyrica website