Papercut and colored pencil art by Sheryl Aronson X 5

Friday, May 21, 2010

Fibromyalgia: What a Pain

One of my earliest posts was about Sjogren's Syndrome, but I never wrote about Fibromyalgia, my other chronic illness.  My thinking was that few people have heard of Sjogren's Syndrome, and more people have heard of Fibromyalgia (or Fibro, as it is familiarly called by some people).  There is alot of misconception out there about Fibro, so I will explain some of its basics today.

'Fibro-my-algia' literally means 'fibrous tissue-muscle-pain'.  That is the main symptom as well: widespread muscle pain throughout the body.  Other symptoms include an increased painful response to pressure, fatigue, brain fog and sleep disturbance.  A common way of diagnosing Fibro is to press on 18 specific 'tender points' on the body, if 11 out of the 18 are overly painful, the diagnosis is positive.  Others say that you don't need 11 positive points for a diagnosis, that fewer painful points and a history consistent with Fibro is enough for a diagnosis.  I have never been tested for the 18 points, but was diagnosed based on the my history, and that 'if you touch me anywhere, I hurt'. 

For some people, the fatigue can be as much or more debilitating than the pain.  The fatigue of fibro can be unrelenting exhaustion.  Some people describe it as feeling like they always have the flu, with the muscle aches, weakness and wiped out feeling.  It often coincides with mood disturbances, anxiety, or depression. People with Fibro often have sleep that is unrefreshing or light, so rest does not help the fatigue.  A friend of mine describes her fatigue as feeling like someone cut the tips off of her fingers and all the blood drained out of her.  I describe mine as my body parts are disconnected and full of lead, and my brain is full of marshmallow cream. 

The brain full of marshmallow cream leads me to the next symptom, brain fog, sometimes referred to as 'fibrofog'.  This is a difficulty in concentration, short and long term memory disruption, and difficulty in decision making.   My husband can tell when I am foggy when I stare at him blankly when he asks me to make even a simple decision. 

Some websites that have helpful info on Fibro are the National Fibromyalgia Association, WebMD and wikipedia.  A couple of good books are; Your Personal Guide to Living Well with Fibromyalgia, published by the Arthritis Foundation and Living Well with Chronic Fatigue Syndrome and Fibromyalgia, by Mary J. Shomon.  Along the right side of my blog you can find a widget with posts by Karen Lee Richards, who was diagnosed with Fibro in 1996, and is the co-founder of the National Fibromyalgia Association. 

One of the problems facing people with Fibro is that many people, including physicians, still don't believe that it really exists as a physical illness.  They think it is all in the head of the patient, because there are no lab tests that diagnose it.  This is changing, as more research is done, and possible links are being found between Fibro and central nervous system dysfunction, neuroendocrine dysfunction, and cerebrospinal fluid abnormalities, among other abnormalities  So far, there is nothing conclusive, but research is promising  Read the hypotheses posted on wikipedia for more on this.

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