25 July 2011

Listener Question About Fibromyalgia [Excerpt from July 25, 2011 Broadcast: "North Carolina Shipwreck Offers Clues About Blackbeard"]

JIM TEDDER: Earlier this year, Tomohiko Hagino in Japan wrote to ask for information about a painful disease -- fibromyalgia.

America’s Food and Drug Administration says fibromyalgia affects about three to six million people in the United States each year. The American College of Rheumatology says fibromyalgia may affect two to four percent of the population. Other studies show that, in some countries, three and a half percent of adult women and one half percent of adult men suffer from the disease.

Untreated or incompletely-treated sufferers often have pain in their muscles and joints. And they are always tired, even when they get a lot of sleep. Fibromyalgia is what doctors call a chronic syndrome. It causes pain and difficulty in movement throughout the soft tissues that support and move the bones and joints.

The central nervous system of a patient with fibromyalgia is more sensitive to extreme “pain transmission” than the nervous system of a healthy person. Experts believe that patients have a surplus of neurotransmitters -- the chemicals that cause pain. Their central nervous system may tell the brain that there is pain even when there is no cause for the pain. Or the neurotransmitters tell the brain that there is more pain than there really is.

CHRISTOPHER CRUISE: Russell Rothenberg is a rheumatologist in Bethesda, Maryland. He is one of the nation’s leading experts on fibromyalgia. He has written many reports about the disease and has produced videos to help those who suffer from it.

Dr. Rothenberg says he has seen more than ten thousand patients with fibromyalgia over the past thirty years. About eighty percent of them are women. He says some of his patients have had a medical problem or injury that led to the disease. He says people with rheumatoid arthritis, lupus, and osteoarthritis appear to be more likely to have fibromyalgia.

Dr. Rothenberg told VOA that some people who develop fibromyalgia have a family history of the disease. He says researchers have found abnormal genetic factors to be more common in some families.

RUSSELL ROTHENBERG: “Well, we know that it could be genetic. And we know that there are certain families where there is a high incidence of fibromyalgia in three generations. So we’re still learning about the genetics of fibromyalgia … our knowledge of who is more at risk for developing this hypersensitivity of pain in the central nervous system.”

JIM TEDDER: The signs of fibromyalgia are complex. Many patients suffer from weakness or what is called a “pins and needles” feeling in the arms and legs. They may also have dry eyes, head pain and bowel problems. Most patients have pain everywhere in their body. The pain can be so intense that, in some cases, even the weight of clothing is too much. Yet some patients have trouble persuading their doctor that their pain is real.

One study found that some patients had to wait three to five years before doctors confirmed the presence of fibromyalgia. One reason for the delay was that many patients looked healthy. And identifying the cause of the pain can be difficult, especially for untrained doctors.

CHRISTOPHER CRUISE: Doctors who left medical school before nineteen-ninety may not be familiar with fibromyalgia. That is because the disease was only given its name in nineteen ninety. There are currently no blood tests or medical imaging tests to help doctors with their diagnosis.

Long delays in the identification and treatment of fibromyalgia can lead to severe disability and the inability to work. People can also be unable to perform the simple activities of daily living without assistance because of the severe myofascial pain.

JIM TEDDER: Dr. Rothenberg says he needs at least an hour with a new patient to find if they are suffering from fibromyalgia. That is much longer than many doctors give to one patient.

RUSSELL ROTHENBERG: ”My experience and other doctors in the field talk about the holistic, comprehensive care that’s required to treat a fibromyalgia patient, and that requires time. And we need to go through all their meds, all their organ systems, their exercise, how they’re functioning.”

CHRISTOPHER CRUISE: Some patients are misdiagnosed as suffering from depression because many of the symptoms are the same – poor sleep patterns, depressed feelings and pain all over the body. And some patients were told that the pain was not real, that they were just imagining it or that that they had mental problems.

Next week, we will hear more from Dr. Rothenberg. We also will hear from a drug company that is advertising a product to treat fibromyalgia. And we will talk with a doctor who is critical of that advertising.

MARIO RITTER: This SCIENCE IN THE NEWS was written and read by Christopher Cruise and Jim Tedder. Our producer was June Simms. I’m Mario Ritter. Join us again next week for more news about science in Special English on the Voice of America.

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