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Very Lost and Confused

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  • Very Lost and Confused

    I have been in my flare for 2 1/2 months. I have horrible cramps all the time. The burning is most of the time managed by baking soda. My lower back is killing me. I have changed my diet completely, I only drink water, eat only a few foods and certainly no acidic things. I have had a hydrodistention and urethral dilation, which did absolutely nothing for me. I started taking Aloe Vera and Marshmallow Root which helped a little but nothing significant. Last week I had my first catheter instillation of Heparin, Lidocaine, and Sodium Bicarb. The instillation was incredibly painful, I cried the whole time. I felt worse after that I did before I had it done. So needless to say, it didn't help at all. I'm a nurse and work 13hr shifts on a surgical unit and I haven't been able to work at all. Each day I work on the floor kills me. The best I can do is rest at home with my heating pad. Ultram helps somewhat but when the pain is really bad, nothing can help it. I don't know what to do! I'm 23 years old and I have to come up with something to make this manageable. Please help!

  • #2
    When I was first diagnosed, being catheterized was painful, but once I learned to relax it became easier. Instillations sometimes don't do much until after you've had several so I wouldn't give up on them yet. Are you on any medications, such as elmiron, for your IC? Elmiron can take six months or longer to become effective but it gives some ICers their lives back. You might also talk to your doctor about trying an antispasmodic (I take levsin SL) or maybe even low dose elavil to help with pain.

    I hope you feel better soon.

    Stay safe

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    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.

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


    • #3
      I am so sorry, for your pain..... I know, I just finished 3 years of college, at 50, so I could work in the medical field but now, to sick to work.


      • #4
        It gets better

        Jester race-
        I am so sorry that this has been so painful and awful for you. It's not fair and it really sucks, but you will find a way to feel better. Sounds like your shifts are really tough.

        The thing that helped me most when I started treatment was meditation twice a day everyday. Check guided medication or youtube or down load some from itunes. My therapist recommended 15 minutes each session. I wake up early before work to do it and medidate as soon as my daughter goes to bed.

        IC symptoms in May 2011
        Mild IC dx by Cysto July 2011
        Symtoms decrease 80% by September 2011!

        Tums 100mg
        fish oil 3-5 grams
        Probiotic 5 billion
        Bladder Ease
        Unda Drops
        Mediclear Plus Protein Shake

        Physical Therapy Graduate!
        Meditation 2x a day
        Castor oil pack
        Teas (nettle leaf, linden flower, camomile, marshmellow root)

        Have tried
        In office instills (pridium, heprin, lidocain, elmiron)
        Desert Harvest Aloe
        atarax 25 mg


        • #5

          Hang In There

          Let's keep praying for a cure.
          IC Symptoms began in early 2001
          Divorced : Sept 2002 (Partly due to IC)
          Diagnosed with IC in April 2004
          Most recent injury - Rupurtured Left Achilles Tendon
          Wed Jan 28 2009
          (Ice Storm Accident)
          2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
          Other Injuries
          Broken Left Ankle - July 2004 ( fell off ladder)
          Broken Left Ankle (Again) - May 2005 (car accident)
          Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

          CURRENT MEDS
          Elmiron, Pyridium