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  • The Rheumatologist says I have P.M.R....

    The dr. thinks I have Polymyalgia Rheumatica...which causes inflammed muscles in several parts of the body which hurts more when the body is idle......evenings, during the night, mornings.......or anytime during the day when you aren't moving. I may have to go on steriod for a year.....ugh!!!!
    Has anyone else been diagnosed with this problem? I'd love some input if you know anything about this. Thanks! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

  • #2
    I have never heard of it, but I feel that way alot.
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      That is just so wrong - to have a disease out there that hurts MORE when you are at rest. I'm so sorry you are facing that. Did the doctor say what the outlook is usually like for patients? Is it fairly treatable?
      Kim

      Diagnosed August 2001

      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

      *****************************

      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

      Comment


      • #4
        HI As we understand it......there's no known reason (kinda like IC!) for getting this illness. It can last from a year to 15 yrs.......usually not longer than 15 yrs. It's usually treated by being put on steriods....and it feels better while you are taking them......tho steriods are SO bad for your body. It's just So painful. I'm SO depressed about having to deal with another illness and all the pain......Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment


        • #5
          Roxie, I am sorry you have been Dx with this. I know you dont want to take the steroids, but maybe they will even help your IC pain since it is an anti-inflammatory. Are they giving you high doses?
          How did they dx you, was it through a blood test? Oh, by the way, where do you get the MSM gel?
          Jen

          Comment


          • #6
            {{{{HUGS}}}} I can only imagine what it felt like to hear you have another illness with unknown cause and no "cure". I'm sorry you'll have to take steroids.
            Kim

            Diagnosed August 2001

            Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


            Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

            I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

            *****************************

            “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

            “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

            Comment


            • #7
              Jen, I get the MSM gel from the jacoblab.com website. It's great stuff and helped me SO much.
              The Rheumatologist said he's pretty sure I have PMR from symptoms......but he did a big blood work up and urine test and I have to have 4 MRI's done. I'm not sure how much steriods he'll prescribe for me. Right now......for a week.....I have to take 2 different muscle relaxers.....one for daytime and one for nighttime. I work full time so I know it's going to be difficult to take meds during the day.
              Thank you ladies for the moral support. I'm just so depressed tonight I could cry. Roxie

              Double Spinal Cord Stimulator surgery 8/09
              Unsuccessful MiniArc sling surgery 12/07
              Dx'd Hypothyroid
              Dx'd Chronic Axonal Neuropathy & Myopathy
              June 2007
              Dx'd IC May 2006 (after suffering for 25+ yrs!)
              First Cysto 1979
              First Hydro 1981 (Many treatments since then!)
              Collagin"Durasphere" injections for urethra
              Gall bladder surgery Aug. 2004
              Gastric Bypass Dec. 2004
              Dx'd: Barrett's Esphogus July 2004
              Dx'd: Vaginal Atrophy 2005
              Bladder surgery 2000
              Dx'd: IBS 2000
              Hysterectomy (fibroids) 1999
              Laminectomy 1989
              Dx'd: Degerative Disk Disorder 1989

              For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
              I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

              Comment


              • #8
                Roxie, dose it feel like you shoulders and arms hurt so bad you want to literly cut them off? I have stock in bengay and thergesic, and it only helps a little bit. and my right knee, oh the pain is just unreal..
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  Roxie,
                  I am so sorry that you are having to deal with another illness. I hope the steroids will help and that you can get some relief. Will keep you in my prayers
                  Miss Bessie

                  Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                  Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                  Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

                  Comment


                  • #10
                    HI Tigger.........yes that's exactly how I feel.......I'd like to cut the extremities off! This illness makes either both shoulders, arms, hands, hips, thighs, calves etc.......hurt at the same time. It's So painful and I'm so depressed.
                    It's going on 2am here now and I'm wide awake. The new muscle relaxer has me feeling nausaus and given me insomnia.....and I have to get up for work in 2 1/2 hrs!.....oh forgot to mention......it's pouring down rain too!
                    The dr. said from my symptoms he's sure I have PMR........but he did do major blood work up to prove it and those test results won't be back till next week. He wants me to go for 4 MRI's and have my eyes tested before he starts me on Steriods. $$$$$$$$$
                    Laura, that's for all the support you have given me......I SO appreciate it! Roxie

                    Double Spinal Cord Stimulator surgery 8/09
                    Unsuccessful MiniArc sling surgery 12/07
                    Dx'd Hypothyroid
                    Dx'd Chronic Axonal Neuropathy & Myopathy
                    June 2007
                    Dx'd IC May 2006 (after suffering for 25+ yrs!)
                    First Cysto 1979
                    First Hydro 1981 (Many treatments since then!)
                    Collagin"Durasphere" injections for urethra
                    Gall bladder surgery Aug. 2004
                    Gastric Bypass Dec. 2004
                    Dx'd: Barrett's Esphogus July 2004
                    Dx'd: Vaginal Atrophy 2005
                    Bladder surgery 2000
                    Dx'd: IBS 2000
                    Hysterectomy (fibroids) 1999
                    Laminectomy 1989
                    Dx'd: Degerative Disk Disorder 1989

                    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                    Comment


                    • #11


                      Donna
                      Stay safe


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                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

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                      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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                      [3MG]

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