Fibromyalgia – Fibro Blog

The National Fibromyalgia Association (NFA) will commemorate National Fibromyalgia Awareness Day on Saturday, May 15 at California State University Fullerton (CSUF) with free day-long activities that include a Wellness Fair, educational seminars, 1K and 5K walk. 

In the evening, R&B singer and new NFA spokesperson, Tony Terry, whose wife has fibromyalgia, will perform a special concert during the closing “Lights of Hope” candle lighting ceremony. Terry will also debut a new song from the National Fibromyalgia Association dedicated especially to the over 10 million people affected by fibromyalgia in the U.S. and 3-5 percent worldwide.

Click here for more information on National Fibromyalgia Awareness Day.

Click here to register for the Walk of FAME. 

“Make Fibromyalgia Visible” is the NFA’s theme for this year’s National Fibromyalgia Awareness Day, officially observed on May 12. Awareness Day is designed to increase awareness and understanding of fibromyalgia – a chronic pain disorder usually characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress.

The May 15 event is co-presented by CSUF’s Fibromyalgia Research and Education Center. For more information, visit www.fmaware.org.

 “It’s all in your head.”

Many a patient has been told that their pain is all in their head—and a forthcoming public service announcement addresses that concept directly. Decades of research have assured all but the most diehard skeptics that fibromyalgia—and its pain, fatigue, and other symptoms—are all too real. But this same research has proven that, in a different sense, FM pain is all in the patient’s head: it is a disorder of the central nervous system that causes the brain to process pain signals abnormally.

Featuring animation that demonstrates the flow of pain signals throughout the body, the 60-second PSA is an overview of cutting-edge FM research.

“Every time I read an article about this being a ‘mysterious illness,’ it made me want even more to tell people the truth about fibromyalgia,” says NFA founder Lynne Matallana. “There are over 4,000 published articles that help us understand this illness.

“This is not an orphan disease; it is a major health problem affecting enormous numbers of people.”

Share your personal story at fibrocenter.com.

If there is a circle of purgatory that Dante forgot, it might be the one reserved for fibromyalgia sufferers. The problem isn’t just pervasive pain. It’s the challenge of having a condition that is not well understood. It doesn’t help that there is no objective medical test to confirm it — no blood test, no cheek swab, no X-ray — just a patient’s subjective reports. Nor does it help that there is no cure. Many physicians don’t want to be bothered with incurable patients…

And yet, this is a huge improvement over the situation a few decades ago. Until 1990, when the American College of Rheumatology published diagnostic criteria, fibromyalgia was routinely dismissed as the imaginary sufferings of hysterical, middle-age women.

Muhammad Yunus, a rheumatologist at the University of Illinois College of Medicine at Peoria, has been a pivotal figure in the field. He published the first scientific study describing clinical characteristics of the disease in 1981 and the first genetic linkage study in 1999…

Doctors today have a much better idea of how to treat the ailment — not only with drugs, but also with exercise and measures to improve sleep. And though the suffering never totally goes away, it is possible to vastly reduce the pain and learn to cope with what remains…

And no matter what gender the patient is, struggles with insurance companies are common. Lynne Matallana, president and founder of the National Fibromyalgia Association, says many members have complained that insurers make it difficult to receive the approved drugs for fibromyalgia.

“Since these drugs are new, there is no generic version,” she said. “But insurance companies often require that doctors prescribe generics first.”

As a result, patients have to demonstrate that they have failed to respond to cheaper drugs, prescribed off-label for fibromyalgia, before they get the ones that work best.

This is an excerpt from a September 23, 2009 New York Times article written by Anne Underwood.  Click here to read the full story.