Tuesday, January 22, 2008

Fibro and Fatigue Today newsletter

www.fibroandfatigue.com 
Fibro and Fatigue Today: January 2008

 Fibromyalgia: Is it a Real Disease? ARE YOU KIDDING ME!

 Ads for a new drug recently approved by the U.S. Food and Drug 
Administration to treat fibromyalgia are hitting the airwaves and sparking 
new debates within the medical community over the very existence of the 
disease.

 A recent article was published in the New York Times over the 
"'controversy' surrounding fibromyalgia," said Robert Baurys, 
founder of the Fibromyalgia & Fatigue Centers Inc. and Fibromyalgia 
sufferer himself. "I found it almost amusing that this kind of denial  continues in the medical community given the research and information  provided by physicians, researchers, drug companies and every expert under  the sun, we can clearly see the disease does exist."

As most of you know Fibromyalgia is characterized by muscle and joint 
pain, flu-like pain that can be severe and constant, a feeling of 
exhaustion, specific tender points, body aches and muscle stiffness. It 
can also be accompanied by irritable bowel syndrome, sleep disturbance, 
headaches, anxiety, depression and a variety of other symptoms. Many 
patients suffer with these symptoms for years before getting help.

 I was particularly taken aback by the headline on the Times piece: 
"Drug Approved: Is Disease Real?" "Is it real?" said Baurys. 
"Hmmmm, let's ask the millions of adults in this country who suffer 
the effects of fibromyalgia, or the thousands who walk through the doors 
of our Centers looking for answers and relief; better yet, ask the 
numerous national advocacy organizations comprised of folks like you and 
me if fibromyalgia is a 'real disease' and what you would learn is 
astounding."

"Many in the medical community are lagging behind and simply don't understand what fibromyalgia is and how to treat it, therefore, 'it 
doesn't exist.'
Often, patients find their concerns dismissed by 
physicians and are considered lazy or crazy. The fact is, the condition is 
very real."

 Pfizer is the firstdrug company to have an approved fibromyalgia 
medication, Lyrica, on the market. Lyrica works by reducing the extra 
"electrical" signals sent out from damaged nerves in the body. The 
Fibromyalgia and Fatigue Centers have been using the drug in conjunction 
with other treatment protocols since it was approved in summer 2007.

"There is no such thing as a miracle pill, but Lyrica is helpful in 
treating some of the symptoms". "The key isn't a 'one pill 
pop' cure, but rather treating the underlying factors which often are 
infections or conditions that must be treated in other ways for full 
recovery. Lyrica was designed to be used in combination with other 
treatments so that all of the underlying issues are resolved. Used in this 
way, it provides optimal results."

"Treatment requires an extensive knowledge of the specialized field and 
focus on the underlying causes rather than just the symptoms," said 
Baurys. "Tremendous advances have been made in the understanding and 
treatment of this disease. Successful treatment requires a comprehensive 
approach, determination by the patient, and support by those in their 
lives. It's our goal to develop individual treatment plans that lead to 
significant change and positive outcomes for our patients."

 Sadly, there is so much garbage and gimmicks out there that it can be 
difficult for the uneducated public to decipher what's real and
what's not. "So, kudos to the American College of Rheumatology, the
FDA, Pfizer, advocacy groups, treatment facilities and those physicians 
who care enough to research the answers."

 Either we are all crazy and lazy or indeed, fibromyalgia is coming to the 
forefront.

 To read more about the NY Times article click on the link below:
 http://www.nytimes.com/2008/01/14/health/14pain.html?_r=1&oref=slogin

* * *

This is the same problem faced with CFS: there is scads of research proving that it's real, but doctors who haven't read the research don't know that.  It's easier for them to blame the patient, call her "lazy" or "crazy" than to find time to read the research and find out what treatment does work.

Don't waste your time trying to educate doctors who tell you your CFS or fibro is all in your head.  I've tried and they won't listen.  Don't make the mistake I did of thinking that if you try every anti-depressant under the sun you will eventually prove to them that anti-depressants don't work and they will agree to give you what you tell them will work -- as a result of all that wasted time, I'm told I deteriorated too far and will never work full-time again.  All because the doctors didn't know what they were doing and were totally uninterested in learning from a patient who knew more about CFS than they did. 

As Dr. Yunus says, "it's not the patients who are disturbed, it's the physicians who are psychologically disturbed, because they ignore the data."  It may be easier to diagnose "lazy" or "crazy", but it is unethical.  Doctors are supposed to "first, do no harm"; they do a great deal of harm when they allow a patient to suffer needlessly and get sicker due to their ignorance of the correct treatment and denial that a documented condition exists.

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