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  • Pain at night

    Hi, this is my first post. My worst pain - feels like a bad charley horse in my bladder and can go on for half an hour or more, coupled with urge to urinate but inability to do so - only happens at night when I am in bed. Pain approaches a 10 - can't walk upright. Does anybody else experience this, and if so, did your doctor have an explanation?

    LeadFoot47

  • #2
    It's not unusual to feel worse when we try to relax in bed --- all the distractions are gone and it becomes very difficult to ignore a painful bladder. I have, however, not experienced pain at a ten from trying to relax.

    Have you been evaluated to be sure there isn't something else going on along with the IC?


    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

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    • #3
      Thanks, Donna, for your response. The pain at night is much worse than anything I have experienced during the day. I was wondering if the prone position had anything to do with it. A cystoscopy clearly showed the lesions, but I guess I need to talk to my urologist again for more tests.
      LeadFoot47

      Comment


      • #4
        If the urologist can't come up with anything, I suggest you go back to your primary care doc and possibly get a referral to a neurologist or orthopedist to see if there's anything going on their areas.

        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


        • #5
          I experienced terrible pain at night when my symptoms started. It was positional and mainly only when I was lying on my sides. Mine though would be relieved by standing up and walking. One uro thought for sure it was a nerve inflammation somewhere but didn't know where. I had to sleep on my back only and not move. Terrible what we go through- isn't it? The drs. had several theories but I'm not sure if any of them knew for sure why it was worse when lying down. One theory was that the intestines were pressing on an already irritated bladder when I layed down, another was a nerve in the pelvic floor muscles being pinched, another was possibly that I was constipated from the bladder meds and the food in the colon was pressing on nerves around the bladder, and another was that it was possibly coming from my lower sacral area nerves. I never did find out why, but since my bladder has calmed down and I have not had any symptoms lately the night time pain has gone away.

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          • #6
            You might read about pelvic floor dysfunction and see if that sounds familiar. I have similar symptoms. Always happens when I am asleep at night but the spasms are my pelvic floor muscles and sometimes my bladder joins in. Those are more sever than any other pain out there. Spams anywhere are horrible! So sorry you are going through this!
            Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
            _____________________________

            DX: IC - November 2002 after hysterectomy
            Interstim implanted March 2006 - died May 2011
            Interstim replacement June 2011
            Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
            Docs: Pain management doc, urologist, family practice

            Comment


            • #7
              I use to have my worst pains at night. I would get up thinking I had to pee. . . but couldn't. It was like a knife, very painful. I realize now it was my pelvic muscles in spasm. I would try to walk, relax, ice it.
              I have been to my 3rd Pelvic Floor Therapist. . And for the past 2 months I have had great relief. And this time we haven't done the painful vaginal, manual stretching. I have used a device vaginally to help with bio feedback and it also is like an internal tens (little electrical shocks). My therapist thinks that it is the down training that has helped me most.
              At the same time I started PT, I also took a medicine for my upper intestines. I had started having IBS symptoms along with my painful pee. My gastro guy, oked Xifaxan. I had read about it on one of the boards. So it could have been the xifaxan that has helped with my pains.
              I know that in the last 3 months I have gained 15 pounds. I was down to 104 pounds so it is not a disaster yet, but I now need to stop the weight gain. I am very hungry all the time. But I am not in PAIN!
              Current Medications:
              Trileptal - MS
              Amantadine - MS fatigue
              Trazadone - sleep
              Elmiron -since March 2007
              Gabapentin - pain
              Citracal - osteopenia
              Vitamin D - deficient
              Valium vaginal - as needed
              Prelief - as needed
              Fish Oil
              Metamucil

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              • #8
                sleeping position

                Thanks everybody for the stories. I used to sleep on my stomach with one leg bent up - for years - can't remember why I started sleeping like that. I have been tryng to sleep on my back lately and - knock on wood- have not had the worst pain in the middle of the night, although I do have some pain in the day and night. How can you tell the difference between pelvic floor dysfunction and IC? I just know my pain is very low and very sharp, even when it lasts for a half hour (in the night). Many years ago I was diagnosed with "microscopic colitis" which acts a lot like IBS. Now I am wondering if the two conditions are related. Surely the lesions in my bladder must be caused by something internal, but my GI tract has always been "touchy."

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                • #9
                  I'm not sure if anyone really knows how to tell the difference or which is causing which condition. My one uro felt the pelvic floor was causing the bladder pain and another one felt the bladder was causing the pelvic floor spasms. There are so many nerves in that area coming from different places I don't know how anyone can really be sure which muscle or organ is causing what.

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