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  • So much pain

    I can't believe how bad my flares are getting! I had my first dmso last week. I am in a terrible flare.....I am thinking that my IC is progressing. Because I haven't been off pain meds since last fall. Do you think that I should call my nurse and let her know how bad my flare is? Or just wait it out until Friday? (which is my next dmso) I don't even know if I should follow thru with my next treatment. I am waiting until the pain meds kick in...ouch it hurts so much!!!!!!!! frown
    DanaW

    "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

  • #2
    Dana,
    I have never had DSMO but did have Silver Nitrate years back and I know for awhile after the installs I was miserable. I think I have seen others write that sometimes they were worse before they were better with the treatment. You may want to call and talk to the nurse and see what she says. I wish you well and I hope you are doing better soon.
    Jolene

    "Life is what happens when you are making other plans" John Lennon

    IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

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


    Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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    • #3
      Hi Dana,
      I am having my 6th dmso on Friday afternoon. My first 4 were really painful, and caused flares that had barely settled down and I had to do another one. After the 4th I took a 2 week break because I was worn out. The 5th settled down alot faster (2 days). I asked my uro about this and he said that the idea with DMSO is to "hammer" the bladder for 6 weeks, and then let it heal. That a few weeks after the last treatment when the bladder has healed I should evaluate to see if it improved my symptoms pre: dmso. In the meantime I am sleeping a bit better after the 5th treatment. I would get and take whatever analgesics you need for pain/flare management in the meantime. Hang in there,
      Cath hi
      One day at a time

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      • #4
        Hi Dana,

        Do you think you could've gotten a UTI from the cathing? Always a thought. I hope you feel better soon.

        Hugs and love,
        Jess
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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        • #5
          Dana I talked to my mom who had them and she said they were very painful for her the first few times.. hugs, please call the dr and let him know. Hope you feel better.
          Brat
          'The will of God will never take you where the Grace of God will not protect you.'

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          • #6
            i have been flareing now for a week with an awful and very painful uti. you should call your doctor you may got an infection from the cath. after the treatment i have done that quite a few times when i had it in the office but had less infections since i done them at home Huummmmm makes me wonder why but then again i could have gotten this infection from me cath myself at home. all i know is it want go away. frown
            Medicine taken daily or as needed:
            1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
            2. MS.Cotin 100mg 3x daily
            3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
            4. Fentanyl 100 mg Change every 48hrs.
            5. Gentamicin 80mg install after each rescue treatment
            5 Leviquin 500mg self start as needed.
            6. Klonopin 1 or 2 daily as needed.
            7. Prosed/DS as 1 every 6hrs as needed.





            I have IC, but IC doesn't have me anymore!

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            • #7
              I had 4 dmso treatments. Stopped after 4 because improvement and my uro at that time was paranoid about eyesight, glaucoma. The first one was bad, 2nd not as bad and 3rd a little better. None were a cake walk and the pain did increase for a few days, plus the burning. I had to beg my uro at the time for pain meds that weren't even real pain meds. now that I know what the names are. What did help me was lots of peridium,(for the burning) heat, ice and muscle relaxants for the bladder. Valium worked best for me. Overall I would have dmso again. Good luck, hope you feel better real soon. grouphug angel kissing blink

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              • #8
                Thank to you all of you for your words of wisdom, as usual. I did call my nurse and told her that I am having more pain. She acted surprised. I swear they don't treat very many patients with this. I told her I would wait it out but, that I don't think it is an infection. And, I am going ahead with the next treatment. Now, I feel so yucky from taking the pain meds every 4 hours. I will let you all know how the next one goes. I also have an appt. with my GP to get blood drawn. I want to see if I have a low thyroid. I keep gaining weight and have dry skin and my hair is falling out! (to name a few) Thanks again!
                DanaW

                "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

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                • #9
                  My Uro. was out of town for the day, so, I went in and peed in a cup. My pain has not let up so I have to see if it is an infection. I have to take 2 percs. every 4 hours and I feel like a zombie. I am really sick of this pain.
                  DanaW

                  "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

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                  • #10
                    Dana,

                    I am sorry you are still having pain. DMSO did that to me as well, I couldn't tolerate those treatments. Hopefully it will get better. We can meet in the middle of WI and have a flare party. lmao
                    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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                    • #11
                      Sounds like a plan Jess!! I don't have an infection so, must be from the DMSO. I am going thru with my next treatment tom. eek
                      DanaW

                      "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

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