FAITH LAPIDUS: This is SCIENCE IN THE NEWS in VOA Special English. I’m Faith Lapidus.
CHRISTOPHER CRUISE: And I’m Christopher Cruise. Today, we talk about fibromyalgia syndrome. American officials say fibromyalgia affects up to six million people in the United States each year. In some countries, the disease is said to affect more than three and a half percent of adult women and one-half percent of all adult men.
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FAITH LAPIDUS: Fibromyalgia can have many symptoms, including depression and low energy levels. But pain — often throughout the body — is the main problem. Patients often have pain in their muscles and joints. And they always feel tired.
Many people with fibromyalgia have trouble persuading doctors that their pain is real. Some of the most common symptoms of fibromyalgia are the same as those of other diseases. As a result, doctors often have trouble recognizing and confirming the presence of the disease.
CHRISTOPHER CRUISE: Treating fibromyalgia can be difficult. Since there is no cure, doctors may experiment with different treatments and medicines. Some drugs work with some patients, but do not work with others. Patients with mild fibromyalgia often do not need any drugs. Their condition can improve with a combination of low-impact exercises, a good diet, getting enough rest and patient education.
Treatment of fibromyalgia patients can be costly and difficult for doctors, because the pain only lessens. It never goes away completely.
America’s Food and Drug Administration has approved three drugs for fibromyalgia – Lyrica, Cymbalta and Savella. These medicines have been shown to reduce pain for about half of patients.
FAITH LAPIDUS: Doctor Russell Rothenberg is a leading expert on fibromyalgia. For many patients, he says, a thirty percent reduction in pain is enough so they can work and take care of their family. Once fibromyalgia is treated, patients can be stable for many years — not getting better, but not getting worse, either.
Some patients have described fibromyalgia as taking control of their lives and making them a prisoner of their own body. Plenty of physical activity in one day can make muscles sore for days afterwards. Foot pain can be so intense that wearing shoes is impossible. Even after getting eight hours of sleep, some sufferers wake up feeling tired. Normal activities like socializing with friends can be impossible.
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CHRISTOPHER CRUISE: The drug manufacturer Pfizer makes the drug Lyrica, which has been advertised as a treatment for fibromyalgia. In two thousand seven, the Food and Drug Administration approved Lyrica as the first drug specifically for the disease. Studies involving one thousand eight hundred patients showed that some patients have less pain after taking the drug.
The FDA called Lyrica an important development in the fight against the disease and a reason for hope in patients. At the same time, the agency said it is not known why Lyrica works. It also said that not everyone who took the drug was helped. Lyrica causes side-effects in some patients, including problems with mental concentration and attention.
The FDA has also approved the drugs Cymbalta and Savella to treat fibromyalgia in individuals over age eighteen.
FAITH LAPIDUS: Gail Cawkwell is a rheumatologist who treats children and young people with arthritis and fibromyalgia. She is also a Vice President at Pfizer.
Doctor Cawkwell told VOA that fibromyalgia is a very mysterious disease that has proved difficult to diagnose and treat. She says Pfizer believes Lyrica helps doctors ease their patients’ pain and other symptoms.
DOCTOR GAIL CAWKWELL: “Lyrica’s primary effect we believe is on pain, we believe is on calming down excited nerves, and its impact on fibromyalgia overall is there beyond just the pain of fibromyalgia.”
FAITH LAPIDUS: Doctor Cawkwell says she has treated thousands of fibromyalgia patients in the past fifteen years. She says that, with good medicines, doctors can make a real difference in the lives of people with fibromyalgia. She says patients make an effort to find out what is happening in the body and how to get better.
But she notes that people can be healthy one day and the next day wake up feeling tired and everything hurts. And, she adds, the disease can last many years, even a lifetime.
CHRISTOPHER CRUISE: Lyrica is an important product for Pfizer. In two thousand ten, the drug produced three billion dollars in sales worldwide.
Doctor Cawkwell says Pfizer is studying patients with fibromyalgia in China and Japan. And she says the company is looking at what she calls “bio-markers” in people with fibromyalgia. Bio-markers help researchers know what is happening in the bodies of people with a disease or medical condition. Doctor Cawkwell says it is important to find bio-markers for fibromyalgia.
DOCTOR GAIL CAWKWELL: “One of the really frustrating things for patients with fibromyalgia is that there’s nothing to measure in labs or in X-rays. And sometimes people think if you can’t measure something then maybe it’s not real. So we are looking at bio-markers, we’re doing sophisticated X-rays, like functional MRI and spec-scanning to understand what happens in the brains of patients with fibromyalgia when they have pain, what happens to their brains when we treat that pain.”
CHRISTOPHER CRUISE: Doctor Cawkwell says people are rarely hospitalized because of fibromyalgia, and most patients do not die from it. She says this is why it can be difficult to know how many people suffer from the disease.
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FAITH LAPIDUS: Researcher Brian Walitt believes that all of the advertising for Lyrica may be bad for people with fibromyalgia. Doctor Walitt is the director of the Fibromyalgia Research Center at Georgetown Hospital Center in Washington, DC. He is studying sixty-seven patients with the disease. He is critical of doctors who look to drugs first to help their fibromyalgia patients.
BRIAN WALLIT: “Much of what I do is actually remove people from their medications so they can remember what they were like.”
FAITH LAPIDUS: Doctor Walitt says the heavy advertising of a drug to treat fibromyalgia may give some people the idea that it can be cured. He says that is not reality. And he says studies of fibromyalgia patients have shown that very few get much better, and some get much worse, even with treatment. He says it is wrong to expect that patients will take a drug and all of their symptoms will go away.
BRIAN WALLIT: “One can pursue one’s health and try to get better, but to expect a cure is unlikely and the best thing that one can do is stop chasing cures and deal with the reality of one’s situation.”
CHRISTOPHER CRUISE: Doctor Walitt says drug manufacturers market their treatments because they are concerned about making a profit. He says fibromyalgia drugs available today are very limited, and drug makers should not be selling a cure. He says that a return to a happy and pain-free life because of modern medicine does not match the reality of fibromyalgia.
Doctor Walitt says he helps patients understand that they are not alone in their suffering. He gives them a better understanding of the disease and shows them how others have found ways to live with it.
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FAITH LAPIDUS: Fibromyalgia sufferers have learned to enjoy the good days and control the pain on the bad days. They have come to accept the fact that a life without pain is probably not possible. However, there are more treatment choices available now than in the past. As a result, an improvement in the quality of their life is possible. Patients know they may be able to regain control of their life with the right medicine and by setting aside time each day to rest.
Exercise like walking helps. So does gently stretching muscles and physical therapy, including water therapy. Help could also come from acupuncture, yoga, a healthy diet, counseling and emotional support.
CHRISTOPHER CRUISE: People with fibromyalgia syndrome can lead healthy and productive lives. And they can have long and successful careers. Experience and better science have made fibromyalgia easier to control for many, even if there is not a cure.
In the twenty years since fibromyalgia was identified and given a name, much has been written about the disease. Much free and well-documented information about the disease is available. And groups have been created to help doctors who treat the disease and patients who suffer from it.
Doctor Russell Rothenberg says the future is looking brighter for those who suffer from fibromyalgia.
RUSSELL ROTHENBERG: “I don’t know if I believe that the disease will be cured in my lifetime, but I hope it will. But I am definitely optimistic about how my patients are doing and how they will do in the future, because the science of fibromyalgia is growing, so as the science grows we’re going to be better able to take care of these patients. There’s a little bit less guesswork for me at this point. That’s what experience and science bring to the table. And so, yes I’m excited about the future of fibromyalgia. We know a lot more about it than we did when it didn’t have a diagnosis name.”
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FAITH LAPIDUS: This program was written by Christopher Cruise. Our producer was June Simms. I’m Faith Lapidus.
CHRISTOPHER CRUISE: And I’m Christopher Cruise. Join us again next week for more news about science in Special English on the Voice of America.