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If I had a dime for every time someone said to me "but you don't look sick!" I'd still be right here, but my diamonds would surely be distracting. To those around me, I look fine. Some days I might limp a bit or look over-tired, but inside I am really hurting. It hurts to shake hands or for someone to thump me on the back during a hug, and the reason is that victims of fibromyalgia have three times the amount of "substance P" (the cells in the spinal fluid that tell the brain that there is pain) than normal people. In other words, if you bang your knee on your desk, it hurts--if I do, it's excruciating because I feel pain three times more than you. I don't sleep well because of the pain and I get more pain when I am tired. Vicious cycle? You bet. I also get depressed when I'm exhausted and am in pain. And just knowing that this painful disease is not curable--and not really well controlled by medications--doesn't help matters much. Most of the time I feel like I have the body aches one feels when they have the flu and this goes on for days. This is a "flare up" and I can usually count on several flare ups a month. Some flare ups are worse than others and are totally unpredictable. I can go to bed feeling good and wake up feeling horrible and never really knowing what set it off. I have a hard time making plans because I never know how I'm going to feel. I had to give up a job I loved because I couldn't get past the constant pain, tiredness and the overwhelming sense of hopelessness that drove me into depression. After quite a fight, I was able to collect disability benefits, which gives me Medicare, which thankfully pays for most of the drugs I am on, including Cymbalta, Darvocet and Seroquel. I really don't like this disease much and I like people thinking that I'm faking even less. I would never choose to be unable to do things I love, including having a challenging job, running and playing with my grandchildren or playing my guitar. My fingers hurt too much to hold down the strings; I guess I should sell it. If you know of someone who has fibromyalgia, be gentle. Give gently hugs and be forgiving. Be thankful that it's not you.
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