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  • #1

    need your imput and help

    HI,
    I posted last weekend that I was in the first flare in years and worst flare ever. I can't get through the day without pain meds. My situation is complicated by the fact that I started new meds and a high salt diet for a condition called postural orthostatic tachycardia. The meds might have made me pee out excess potassium, could that have started such a flare? I was drinking salty water flavored with some crystal light to get enough salt, would that have done it? I have read now that artificial sweetners are a trigger but I had been so well for so long it didn't occur to me that would be a problem. I meet with my drs next week and I want to unravel this mystery and be out of pain. Any insight or ideas? When I met with my uro last week he thought it was stress but I have never had burning like this! (not uti though - was checked). Thanks!
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  • #2
    I also have postural orthostatic tachycardia with IC. My doctor has me drinking 64 oz of Gatorade a day b/c the electrolytes in the Gatorade help. I haven't had excess trouble with the Gatorade. It might be worth looking into.
    Lauraheather

    Comment

    • #3
      Definitely should check in with your doc again and let him or her know your symptoms and maybe switch to something like the gatorade if your doc approves.
      Sorry you aren't feeling well. I hope you can get some rest and relief very soon!

      ~Claudia

      "A heart is not judged by how much you love; but by how much you are loved by others."
      ~ The Wizard of Oz

      "If I ever go looking for my heart's desire again, I won't look any further than my own
      back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy

      Comment

      • #4
        HI! If I eat salty things is a sure fire way for me to bring on a flare or things with critic acid.....like most bottled drinks. I'd definantly notify the dr. with this problem. 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
          thanks guys!
          Roxie tell me about the msm gel?? Thanks,
          Lina

          Comment

          • #6
            Good Morning!

            So far the MSM gel has worked great for me. No more urethra pain and haven't had a flare up since I started using it!!!!! (11 days ago now!)
            My husband bought the stuff for me and I was in such pain.....I was afraid to try it because I was worried it would burn or make things worse. So it sat in my bathroom for several days. Finally I was hurting so bad I thought "It can't hurt worse than this!" so I put a little bit on my finger and rubbed it around the urethra area. By the next morning the pain was subsiding and the next day it was GONE!!!!! I can even bend over now, before if I bent over my urethra would kill me!
            The website for the MSM gel is http://www.jacoblab.com/FAQs.htm
            I've read that it also works great on Fibormyalgia (sp?) pain and several others. It works like an anti inflammatory and heals.
            Let me know if it works for you........I'll keep my fingers crossed! Take care.....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

            • #7
              O.K. I finally ordered the MSM gel. I hope it helps me too!!
              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

              • #8
                crystal light gives me HUGE flare ups....so that may be the problem!
                Erika
                wife to Jeremy
                mom to Emma (3-8-05)
                and Natalie (7-23-07)


                Meds i'm currently taking:
                Lortab as needed for pain

                Meds that did not help:
                Detrol LA
                Lexapro (caused urgency)
                Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)


                Comment

                • #9
                  Laura I hope the MSM works for you the way it has for me! I just came inside from working in my cactus garden and my humming bird garden.......bending and kneeling.......with NO urethra pain! YEAH!!!!!! Still no flare up either! 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

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