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Help! MY remission ended with a BANG!!!

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  • Help! MY remission ended with a BANG!!!

    I've been in remission for almost a year. Unfotunately, that ended with a humongous flare. I woke up in the middle of the night and I haven't stopped peeing since. My Bladder feels full but only a trickle comes out. Makes sense because it's only a few minutes between trips to the bathroom. I haven't seen a Doctor since mine was killed last June. I don't want to start from square one. I started my Elmiron again. Is there anything else I can take? Anything over the counter? I can't find my peridium so it's really really painful. Please help. I can't afford to leave work, but I can't make it through the day like this.
    Traci in Rogers, AR
    Married 12+ years. Mom of 3 boys & 1 girl (ages, 23, 21x2 and 19), Grandmother of 3 girls and 2 boys (ages, 7, 6,1x2 and 5 1/2 months).

    Dx's

    Fibromyalgia 2006
    Restless Leg Syndrome 2006
    IC 2005
    Endo 2005
    Migraines 1995
    IBS 1990
    TMJ 1990
    Asthma and allergies all my life

    IC Treatments Tried
    Diet Changed, Instillations, Elmiron.

    Current Meds
    Pyridium, Elmiron, Hydroxyzine, Elavil, Requip, Cymbalta, Flexaril, Ultram

  • #2
    ARe you sure it's not a UTI? If it's not maybe try to take some advil. You cant find pyridium? I used to take cystec or uristat. Those are pretty much the same thing. Maybe try drinkin baking soda in water? I know that tastes nasty but it does help. I totally know how you feel, somedays at work the pain is umberable... maybe your boss will let you leave for the day? I hope you feel better.
    Hugs
    Rachel
    ***Rachel***

    Dance like no one is watching
    Love like you've never been hurt
    Live today like it's your last

    Dxd with IC in June '06

    Comment


    • #3
      Thanks. I'll try everything except the baking soda. I've tried that and it plays havoc with my blood pressure.
      Traci in Rogers, AR
      Married 12+ years. Mom of 3 boys & 1 girl (ages, 23, 21x2 and 19), Grandmother of 3 girls and 2 boys (ages, 7, 6,1x2 and 5 1/2 months).

      Dx's

      Fibromyalgia 2006
      Restless Leg Syndrome 2006
      IC 2005
      Endo 2005
      Migraines 1995
      IBS 1990
      TMJ 1990
      Asthma and allergies all my life

      IC Treatments Tried
      Diet Changed, Instillations, Elmiron.

      Current Meds
      Pyridium, Elmiron, Hydroxyzine, Elavil, Requip, Cymbalta, Flexaril, Ultram

      Comment


      • #4
        I'm so sorry Traci!

        Does it hurt to take even just a tiny teaspoon of the baking soda?

        I hope you get back in remission quickly.

        Hugs,
        Moonheart
        http://www.TheCraftyEwe.etsy.com

        Comment


        • #5
          Maybe you should get tested for a UTI, maybe a tums, and drinking plenty of water will help. If you just started the Elmiron again it could take awhile for it to work again. I think finding a new URO might be a good thing if your starting to have problems again. Hope you feel better soon.

          Comment


          • #6
            Pyridium or urelle are my best bet for uti-like flares. You may want to get seen like everyone else mentioned. It seems that since this came on all of a sudden it could certainlly could be a uti. I hope that it is(so your remission won't be over and so you feel better faster) If it isn't a uti, I'm truly sorry that you had a tast of success and now your in pain again

            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment


            • #7
              I can't take soda because of high blood pressure, so I take Tums for flares. I noticed you said you "started elmiron again." It's not something you can usually stop taking --- the way it helps some people is to help repair the bladder lining, but if you stop taking it, the temporary "lining" doesn't last.

              You can get a low dose pyridium over the counter.

              Sending healing thoughts,
              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              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.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
              [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

              Comment


              • #8
                Thanks everyone for your replies. I saw a new URO yesterday. I'm back on all my meds. No UTI. He gave me pyridium. I won't ever stop my meds again. He said it's all the stress I have in my life right now.
                Traci in Rogers, AR
                Married 12+ years. Mom of 3 boys & 1 girl (ages, 23, 21x2 and 19), Grandmother of 3 girls and 2 boys (ages, 7, 6,1x2 and 5 1/2 months).

                Dx's

                Fibromyalgia 2006
                Restless Leg Syndrome 2006
                IC 2005
                Endo 2005
                Migraines 1995
                IBS 1990
                TMJ 1990
                Asthma and allergies all my life

                IC Treatments Tried
                Diet Changed, Instillations, Elmiron.

                Current Meds
                Pyridium, Elmiron, Hydroxyzine, Elavil, Requip, Cymbalta, Flexaril, Ultram

                Comment


                • #9
                  I am so sorry I hope the pyridium helps you as much as it helps me!

                  Erika
                  IC diagnosed officially via cysto/urodynamics 1/26/07

                  Grade II Endometriosis diagnosed via lap 12/11/07

                  "Fall down seven times, Stand up eight."

                  "Life is a tragedy for those who feel and a comedy for those who think."

                  Current Treatments:
                  Interstim Since 5/25/07!
                  Birth Control

                  Comment


                  • #10
                    what do you think caused the flare?

                    If its food related...baking soda /water then 3 tums & alot of water... helps me.
                    I have HBP too...but sometimes..you have to do..what you have to do.

                    if its stress related...well.i havent figured that one out yet
                    Quit ELMIRON due to hair loss
                    Cystoprotek ROCKS!

                    find me on FACEBOOK -
                    search my email [email protected]

                    Current Meds:
                    AM Cystoprotek & ATARAX 50mg
                    Dinner CYSTOPROTEK
                    PM Elavil 25mg

                    Comment


                    • #11
                      It could be anything. I have custody of my 5-1/2 month old granddaughter, the company I work is going through a lot of changes in my department and my husband has been out of work for the last three months.
                      Traci in Rogers, AR
                      Married 12+ years. Mom of 3 boys & 1 girl (ages, 23, 21x2 and 19), Grandmother of 3 girls and 2 boys (ages, 7, 6,1x2 and 5 1/2 months).

                      Dx's

                      Fibromyalgia 2006
                      Restless Leg Syndrome 2006
                      IC 2005
                      Endo 2005
                      Migraines 1995
                      IBS 1990
                      TMJ 1990
                      Asthma and allergies all my life

                      IC Treatments Tried
                      Diet Changed, Instillations, Elmiron.

                      Current Meds
                      Pyridium, Elmiron, Hydroxyzine, Elavil, Requip, Cymbalta, Flexaril, Ultram

                      Comment


                      • #12
                        I am so sorry you are having pain, I have been in remission for awhile then it did the same to me, and I am at lost as well in what to do. The Doctor thinks I am having a hormoaral issue and need to see him when I have the flair ups badly witch is a week before my cycle, I just go off the phone with them, the problem is I don't have insurance right now to go in and see him. I love my OBGYN he really lisens to what I have to say, I hope you find a solution to you problem!

                        Lori

                        Comment


                        • #13
                          Traci,
                          Sorry to hear you're flaring. I'm going through the same thing. I was in remission pretty much for a couple of years and then stress/hormones brought on a major flare. I'm lost as well this time around and am just trying to get through it day by day. None of my usual meds are working and I finally resorted to getting pain meds from my primary doctor today. At least I can maybe get a small break from the pain. UGH.
                          mom_in_ma

                          Comment

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