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Major Flare Wont Go Away...Please tell me I'm not crazy

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  • Major Flare Wont Go Away...Please tell me I'm not crazy

    I can't stand the pain anymore! This flare started right after Christmas. Its awful when you go to the bathroom and you get that strange feeling and you know its coming. No UTI. Doctor gave me my usual cocktail of meds. Taking oxybutrin, pyridium, elavil, atarax, and elmiron. Ran out of B&O suppositories...doctor gave me prescription for 3 boxes of 12. No one in Minnesota has them. My best friend, a nurse called every pharmacy in 2 states. She found me one box and I picked it up yesterday. The pain is incredible. It just won't go away. I'm in the bathtub every half hour...the only thing keeping me sane. But it wears off pretty fast and I have to get back in. Been in bed a lot. When I get up in the morning it is not so bad...as the day goes, the pain starts getting worse and worse. By 4PM I am in bed with a heating pad. Started Prerelief I found at the drug store waiting for my B&O's to be filled. Tried it this morning. Anyone have good results from it? I also ordered one of those heating pads shaped in a triangle to heat in the microwave. I hope it comes in the mail today. People keep asking whats wrong with me, but how do you explain it? There's no cure and its a dibilitating disease! I always feel like they think I'm just stressing out. I'm so sick of being in bed. I want my life back!!

  • #2
    I'm so sorry you're in such an awful spot. Are you following an IC diet? Drinking enough water?

    Sending healing thoughts,
    Donna
    Stay safe


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    • #3
      Things I've Tried

      Following IC diet. Have lost 22lbs since Christmas. I've just lost my appetite. I drink one bottle of water after another. The meds make your mouth very dry. Go through more than 12 bottles a day. My urologist (who has since moved away) recommended exercise like walking. Been walking a mile or more plus other exercise for an hour every day if I'm up to it. I wonder if its making it worse? I mean, should I remain still so as not to aggravate it? Seems like I've tried everything. If anyone has ANY suggestions I will be happy to try it. Its so good to find people that know what I'm going thru and not thinking its all in my head. You guys are great!

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      • #4
        Wow, that is a lot of water to drink.

        Are you drinking an ic safe water. I know a lot of us have trouble if there are added minerals. I know Dasani causes problems for some of us.

        Hope you feel better soon.

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        • #5
          I am afraid to walk to much it makes my bladder feel like its going to explode.
          shaking it up bothers me, stress also kicks it off. DMSO treatments seem so far to help me the most and I take peridium as needed and I lie down and try to calm my self when I feel a flare coming on. We all know what you are going through I hope and pray you find a new uro that will find a better treatment plan for you. Keep in touch and let us know when you get a new uro.
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          • #6
            You are definitely not crazy! I'm right there with you...been in a flare for a month and I feel like I'm going crazy due to the burning. I wish I had an answer for you, me, and everyone in this situation. I'm doing my best to talk to myself in a kind, nurturing way. If I get too upset about the pain, it only flares more.

            I hope you feel better soon.

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