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Fibromyalgia awareness day!

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  • Fibromyalgia awareness day!

    Today is FM awareness day everyone! Please let everyone know. Maybe we can get some REAL exposure for us "silent sufferers".

    Be well,
    Tracy
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

  • #2
    Thanks for letting us know! I have Fibro too. I am glad we have an Awareness Day.

    Comment


    • #3
      me too! i just wish there would be some sort of PROGRESS. dare i say...a cure? even just a REASON why this happens would be nice. i'm all about the "WHY" things happen.
      (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

      Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

      I'd like to be on House, MD as a medical mystery.

      Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

      Connor & Mommy by the tree:


      Connor with Santa...so happy!


      I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

      Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

      I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

      Comment


      • #4
        Yeah, me too! I also wish that people that are not Fibro patients would not be lumped in with us. You know how when Drs. dont know what's wrong with someone who is tired alot or hurting, they'll say, "Well, it's probobly Fibro". But, they dont say it like it is something legit. They say it like, "Well, I dont know what's wrong with you, and you are probobly a lunatic, drug seeker, or a hypochondriac, but I know you want me to tell you it's something, so I will tell you it's Fibro. After all, no one can prove it isnt, and I cant help you with Fibro anyway, so that's as good of a d/x for you as anything!" THAT'S the kind of stuff I hate!!!!! It waters down our d/xes and makes them illegitimate. You dont hear Drs. saying, "I dont know what's wrong with you, since you are tired all the time and hurting it's probobly cancer." Nope, they'd NEVER say that! B/c they view cancer as something real.

        I know that we have alot of Drs. on our side that know it is a real disease and are trying to help us. They arent the ones I am talking about. I am talking about the others who think it is a made up thing, a "waste basket diagnosis." The same ones who will d/x someone with it but wont r/x them some sleeping pills, pain meds or muscle relaxors to help them deal with it. GRRR!!

        Can you tell they get me fired up? LOL!

        Anyway, thanks for posting what you did. We all have to do everything in our power to get Fibro recognized as a disease in it's own right that is legit and causing suffering for millions of people. Thanks for doing your part today!

        Hugs,
        Amy

        Comment

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