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Lack of Awareness and Understanding About Fibromyalgia
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MarFran posted:
It's hard to cope with the lack of understanding and awareness about Fibromyalgia/Chronic Fatigue Syndrome. The Soc. Sec. Admin. didn't even accept it years ago, and it wasn't until 2007 (13 years after my onset) that I won a disability case after a 2-year battle and 2 appeals. No one understands how debilitating this condition can be and how it affects everyday life. I have to pace myself carefully because chronic fatigue is my biggest problem most of the time. I have many limitations and can't live like a normal person. I wish there was more publicity in the news and on TV to create awareness and validate this condition. Fibromyalgia (at least partly) caused me to become estranged from my brother over 3 years ago, and it did irreparable damage to our relationship. As hard as it is to lose someone close to us, it's not worth keeping people who can't accept the truth and be be supportive of us us in our lives though.
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BetteK responded:
You can tell people you feel like you have a permanent case of flu. Or you were just hit by a Mack truck. Or your last good night's sleep was in 1999.

However, there's nothing that can possibly let them know how you feel. My husband has been calling me lazy for years.

Now his localized pain has morphed into FM. too. He's on Lyrica and Cymbalta, and Celebrex, and fentanyl patches for his pain. He still feels like. . .mmm, like you and me and the rest of us here on the fibromyalgia exchange.

I truly feel for him, but I always wanted him to feel like this for just one day. Wicked, aren't I?

Towards better days,

BetteK
 
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ZINNMARK replied to BetteK's response:
IM NEW TO THIS AND TRYING TO UNDERSTAND FIBRO MY FIANCEE SUFFERS FROM IT AND I NEED EDUCATION ON IT ANY SUGGESTIONS WOULD BE APPRICATED
 
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ZINNMARK responded:
IM HAVING TROUBLE UNDERSTANDING FIBRO AND LOOKING FOR MORE EDUCATION ON IT
 
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BetteK replied to ZINNMARK's response:
ZINNMARK, go on line and read the posts on the Fibromalgia Network. If you need a booklet, try the arthritis association. Once you have read these, if you still want to have a better idea of what is going on, try to get ahold of The Fibromyalgia Helpbook by Jenny Fransen and I Jon Russell. It tells you the basics of what is going on, and also explains about the neurotransmitters, hormones, and pathways that are contributing to your condition.

This book made things understandable while not talking down to biologists like me who really want to understand what's going wrong so I can reprogram things back right.

Do this basic reading and then write back. We'll talk then.

BetteK









go
 
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MarFran replied to ZINNMARK's response:
Here are some websites for information on fibromyalgia:
In addition to Fibromyalgia Network (www.fibromyalgianetwork.org and www.fmnetnews.com ), try Nat'l. Fibromyalgia Partnership (www.fmpartnership.org ), Nat'l. Fibromyalgia Assoc. (www.fmaware.org and www.FibroHope.org ), for info. & education: www.fibrocenter.com , plus the following website that posts research and treatment news: www.imunesupport.com
 
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MarFran replied to ZINNMARK's response:
The unpredictable nature of Fibromyalgia with it's on-again/off-again symptoms is very frustrating and hard to deal with. That's one of the things that makes other people think you're making up lame excuses for not doing things and it causes disbelief. It's hard to make plans because I never know when, or how long, I'll feel well enough. I have to take care not to overdue things, and I can have setbacks due to any small amount of ordinary everyday stress. I can feel very wiped out for days or months at a stretching, even having doubts about what's wrong with me myself. I wake up in the morning feelling like I was hit by a truck and some days my whole body aches as if I had the flu, but without the cold-like symptoms, except for a low-grade fever. It can feel like a great effort to do anything. It helps to pace myself and plan periods of rest (sleep or just relaxation when stress can be avoided) throughout the day. Fibromyalgia can cause supersensitivies--to medications and things in the environment (I'm sensitive to strong chemical odors from cleaning products and perfumes, so I look for natural ingredients, and I feel stressed after being around too much noise, especially in crowded places.)


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