Raising Fibromyalgia Awareness

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edited March 2015 in Awareness

Fibromyalgia article: Raising Fibromyalgia AwarenessRaising Fibromyalgia Awareness

The more the general population knows and understands about fibromyalgia, the more can be done. There are so many ways to raise fibromyalgia awareness!

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Comments

  • Today I'm in the middle of a flare-up. I don't know what I'm doing writing using my tablet. Everything hurts, every single muscle, every single joint.
    Had to take my father to his Dr. He is 85 and doing not too good. I dint see it coming but at this point I have IBS syntomps, I can't urinate and was having problems breathing . I had to take the astma medication ( I never had have astma and Dr says it's the Fibro ) and I need to spend a minimum of 20 min to urinate.
    I've lost my job since even dough I was taking over the counter medications for pain they said I was taking heavy painkillers, they took me for a drug test which came out negative but they still fired me. People need to know more about Fibromyalgia for not to be that cruel.
    I need to finish right here because of the pain.
  • finafina Member
    when i try to explain my pain to my family or friends they somehow always manage to turn it about them or i am told to get over it...Really! Dont they think i would if i could.
  • @fina ...I know right? Do family members honestly believe that someone would want to live in this kind of pain every stinking day of our lives since prior to diagnosis and thereafter? Being an RN and knowing what to expect from it, I'm occasionally still surprised at the extent it afflicts people.
  • I'm 56 years old and was diagnosed (finally) with this disorder 2 years ago. In the intervals prior to and since receiving an actual diagnosis, I experienced entire spine pain (have one herniated disc, 3 compression fractures, bone spurring, DDD), left shoulder pain (chronic humeral dislocation with many fractures in humeral head so it won't go back into the socket and stay there), severe osteoporosis (could not take HRT due to history of stroke, could not take meds to help osteoporosis due to very bad teeth/gums), bipedal ankle edema, bilateral knee pain, GERD, IBS (diarrhea more than constipation) etc.etc.etc. This disorder has turned my life upside down. I feel that this is my punishment for something I've done, even though I know better. Can't stand the weight gain, yet can't do any exercises or simple walking without the back pain/muscle spasms kicking in, even with being on muscle relaxer's. Finally found an oral surgeon who would extract all my broken and whole teeth surgically, so that I could start taking the bone density meds to help the osteoporosis, and oh joy...I get to wear dentures or try to wear dentures...teeth fragments are still trying to make their way out of my gums causing more pain so I can't wear dentures for long. They only loosen up in my mouth anytime I try to eat something solid anyhow. Lyrica did zip/zilch/zero/nada for me regarding the pain. I was also tried on and continued for 9 months on Cymbalta (even though it did nothing to help) from my pain management MD, and kept "waiting for it to kick in". Some days I just can't wait for it all to go away forever. Oh, I forgot, another "new" diagnosis ...now I'm diabetic.

    At any rate, when people ask me about the fibro, I tell them all about it from the nursing standpoint not my personal standpoint. I don't want to discourage them if their diagnosis is new, or have them think I'm just "feeling sorry for myself (seeking pity) and exaggerating it" which I have heard from people who are/were dear to me. I tell them that it can be very debilitating, but that it affects people differently and to be sure to tell their MD EVERYTHING so that they can possibly be helped. There are many folks who are able to continue to do the things they love, and be active. For me, I just keep on waiting for it to all end.
  • I can only say how bad I feel for all of you who are suffering without the support you need. I cannot imagine how terrible it must be to suffer from such a horrible illness and then not get the loving support you need. Adriel Maldonado, who wrote this article, is my daughter, and I am so thankful for her openness in sharing her feelings and educating me along with others about fibromyalgia. It may help that I have chronic, "invisible" illnesses, also, but it is primarily my love for my daughter that makes me want to know how she feels. I tell people every chance I have that she has fibro so they can ask questions if they want. Some do, but no one ever says anything unkind. I don't understand the responses some if you are getting. I think it would take a cruel person to not be moved with compassion to your plight. Perhaps giving them articles about it and continuing to try to educate them would help. It's really helped me. I wish you all the best and pray for the day when no one will say "I am sick." - Isaiah 33:24.
  • I would like to sell bracelets with the purple ribbon to bring awareness to Fibromyalgia. How would I best present this to the public so folks have confidence that the proceeds would go to fibromyalgia organizations? (the price of the bracelet would be for the materials) ( the labor cost is my donation). Any suggestions would be helpful.

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