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Saturday, May 12, 2012

National Fibromyalgia Awareness Day - Do You Know These Facts?


Anyone with Fibromyalgia can tell you how "real" this condition is.  How debilitating it can be.  How much pain, both physically and mentally, they deal with on a daily basis.  Many people who do not have Fibromyalgia will say things such as Fibromyalgia isn't real.  The pain is in a person's head.  There's no reason why someone with Fibro can't exercise and that exercise would help the pain. 

I'm here to attest, Fibromyalgia is a very real condition.  When a person has Fibromyalgia, or any other chronic pain condtion, they often go through the grief cycle.  They have to accept that they have this limiting condition, process the information, and come to terms with it.  A lot of times, it takes quite some time for people to get past the denial stage, and the anger stage.  I'm still not sure that I'm all the way past the angery "Why Me?" stage, to be completely honest.

Doctors and researchers still aren't quite sure what causes a person to get Fibromyalgia, but there are some risk factors that have been proven to have a correlation to a person getting Fibromyalgia in their life.  The two risk factors that I found the most interesting, are being born prematurely and having bad growing pains as a child.  My doctor, Carmen Gota, at The Cleveland Clinic, is the one who asked me if I was premature (yes, I was) and if I had bad growing pains as a child (I did.  I remember laying in bed, and laying on our living room floor bawling in pain and agony in my legs as a small child). 



Research has proved that people with Fibromyalgia have a real psysiological and neurochemical problem.  Research proves that there's a malfunctioning of the central nervous system, commonly called the CNS, which includes the brain and the spinal cord.  There appears to be a variety of abnormalities that occur in the peripheral soft tissues (the muscles and connective tissue) and the peripheral nervous system that communicates with the CNS. 

CNS research on Fibro has shown alterations in pain-related chemical transmitters, reported in the spinal fluid.  Elevated levels of pro-inflammatory cytokines have been found by may research teams.  These are the substances that form a communication link between your body's immune system and the neurological system. 

Brain imaging has shown that the blood flow and metabolic processes in the brain are significantly disturbed.  The autonomic nervous system is not functioning properly in people with Fibromyalgia.  Research on the primary pain conrol system in the spinal cord shows that it's not filtering out or decreasing incoming noxious signals from the peripheral tissues.  Even the "Fibro Fog" one suffers with Fibro, has been documented by memory tests from researchers, proving an inability to concentrate.  Research has also found that Fibro patients have high levels of nitric oxide-producing enzyme, which explains why patients have an intolerance to exercise.  -No, they're not just being lazy.  It hurts, it's hard, and exercising can leave one almost crippled in pain.

There is more research.  There is more proof, that Fibromyalgia is a very real, potentially debilitating, condition.  If you suffer from Fibromyalgia, don't ever let anyone tell you that it isn't real, or it's all in your head.  Start pulling out some facts about Fibromyalgia if you're confronted by someone who says it isn't real, or it's that bad.  I had someone say to me once, "Well, at least you don't have cancer.  Be grateful for that, because Fibro won't kill you.".  My response to that was "No, you're right, Fibro won't kill me.  It assures me that until enough funding, enough research, enough demand to find a cure is made, that I don't have any chance at being cured.  It assures me that I will have to live every. single. day. of the rest of my life in pain and feeling like a fool when I can't remember a word in the middle of a sentence.  When I walk to the kitchen then don't have a clue why I just walked there.  I don't have chance of getting better, as most cancer patients do.".  I refuse to let anyone belittle my condition.  My condition is very real, and very hard to mentally deal with, let alone the physical aspects.  Education is key to demanding more research and a cure in the future.  Do your part.  Join me in advocacy and awareness in a very real, very painful, condition.


2 comments:

  1. Thank you for writing this post Amy. After suffering for years, I was finally diagnosed with Fibromyalgia a year ago, although I still feel the need to explain myself to people and at times, even my doctors. I am so sick and tired of this disease and what it is doing to my life. I often wonder how I am going to feel in 5 years if I feel this awful now. I am honestly frightened, not only for myself, but for my family. I am sorry for rambling, but I have had a bad week and just recently suffered through a flare that was debilitating.

    Thank you for this blog and thank you for being you. I appreciate every word that you have written and how much you are helping others.

    Have a beautiful and happy Mothers Day!

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  2. Roe,
    Thank you so much for your kind words. I'm so sorry to hear that you've had a bad week and recent pain flare. I too, have had many pain and insomnia flares in the past 5 weeks since my husband left. 2 weeks ago my daughter in law drove me to the grocery store. Bending to get items off the shelf, reaching and pulling, putting everything onto the belt to be scanned, then loading it into the truck left me completely exhausted. While standing in line I was afraid I was going to pass out. On the way home, I hurt so bad that I started crying. I couldn't help it, the pain was that bad. -Very embarrassing to me, infront of my DIL. I can relate to what you're feeling. What you're going through. If you are ever having a bad day, please don't hesitate to contact me as I "get it". I'm always here to listen. =) I also hope you have a wonderful Mothers Day, and I appreciate you supporting my blog and my efforts. =)

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