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  • #1

    Pain relief

    Hi - I am having a pretty bad flare of IC and not sure what medication works best for pain. I had two bladder treatments last week and going in for another tomorrow. My primary doctor had given me a weeks worth of tramadol but took my last one this morning. I thought I could tough it out until tomorrow but my poor bladder hurts so badly and I can barely pee. I’ve tried ibuprofen, uribel and cyclobenzaprine (muscle relaxer) with no relief. .. I’m going to call my PCP (since my urologist doesn’t prescribe any pain medication). Please let me know if you know of something that works...
    I just found out my doctors office is closed today and they won’t page doctor for pain medication. Guess I’m going to have to tough it out. 😣
    Last edited by KHD003; 08-04-2020, 07:30 AM.
    Tags: None
  • #2
    I am sorry you are hurting. It is also a shame this forum is so dead lately. It used to have so many people who would help one another. I cant for the life of me understand why people would use facebook for IC help. It is so difficult to find anything because there are no categories on the facebook sites. I also use a pain management dr and between narcotics and uribel and bentyl I keep my pain fairly low. I hope to hear from you soon. Maybe we can jump start this forum somehow.

    God bless you
    • Likes 1

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    • #3
      Thank you so much for your response. I had my 5th bladder treatment yesterday and doing much better... the cocktail that they use helps to soothe and calm down my flare. I have an appointment with my new PCP next week. He is an internal medicine doctor and was actually the hospitalist on call when I had my first major flare about a year and half ago - so I hope he will be more understanding / receptive to prescribing pain medication when needed for my more severe flares. I can usually get it under control if I go in right away for bladder treatment at first sign of symptoms. I’ve been going to a uro-gyn office the last year + and that’s been a big help. But he won’t prescribe any pain medication. I’ve also gone to two pain specialists who would only do nerve blocks (no opioids). It’s frustrating that people with true pain are not able to get help due to the whole opioid crisis. I probably said this before, but it seems like it went from one extreme to another. 😕
      thanks again for your response ... I really appreciate it. 🙏

      Comment

      • #4
        I absolutely understand the frustration we can feel when our doctors can't prescribe pain control medications for us. I saw my pain specialist recently and there has actually been one change that will make my life easier --- my pain specialist will be able to okay a refill of pain medications --- I won't have to either make two trips to the pharmacy (one to deliver a written prescription, another to pick up the pills). Unfortunately, even though it should be reasonable for our primary care physicians to actually give us primary care, the regulations, which can vary by state, actually forbid their prescribing adequate pain control, other than short term care for an injury or temporary illness.

        Have you tried a nerve block? Sometimes that can be an effective alternative. I wish I could help you.


        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
        • Likes 1

        Comment

        • #5
          I am so sorry that you are in so much pain. I hope and you get some relief soon.

          Take Care and Be Safe
          Tori
          Tori

          Diagnosed with IC on 8/29/ 2018
          Started Elmiron on 8/30/2018
          Married with 3 daughters ages 14,10,and 7 (as of Aug 2020)
          Occupation: Day Care Center Manager (Currently unemployed due to Covid-19)
          • Likes 1

          Comment

          • #6
            Thank you ladies! I’m supposed to have my last treatment done this afternoon but think I have to reschedule. I’m not feeling well enough to make it there ... on top of IC also have Primary Adrenal Insufficiency. I’m trying to taper down on my steroids and just very tired and achy. My goal is to hopefully start having more good days than bad days - but I’m not there yet. I see my new primary doctor next week and will talk to him about options for pain management for IC flares..., he wrote a script for tramadol to get me through week or so - but that only helped slightly. I also started taking some supplements- Marshmallow root extract and Aloe Vera capsules. This was on the recommendation from the nurse practitioner at my uro-gyn’s office. Hopefully they will help as well.

            Comment

            • #7
              Originally posted by KHD003 View Post
              Thank you ladies! I’m supposed to have my last treatment done this afternoon but think I have to reschedule. I’m not feeling well enough to make it there ... on top of IC also have Primary Adrenal Insufficiency. I’m trying to taper down on my steroids and just very tired and achy. My goal is to hopefully start having more good days than bad days - but I’m not there yet. I see my new primary doctor next week and will talk to him about options for pain management for IC flares..., he wrote a script for tramadol to get me through week or so - but that only helped slightly. I also started taking some supplements- Marshmallow root extract and Aloe Vera capsules. This was on the recommendation from the nurse practitioner at my uro-gyn’s office. Hopefully they will help as well.
              When trying new supplements, I suggest adding them one at a time with a few days between additions --- that way, if there's a bad reaction, you immediately know which one.

              Warm hugs,
              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
                First, I'm so sorry for your pain. I've had IC now for over 24 years so I can relate.

                You've probably heard this already, but an ice pack (laying down, and wrapped in a thin cloth between your legs) helps plus if necessary a heating pack on the lower abdomen also helps. I got the ice pack from the hospital and it works better than any ice pack I've ever used. You have to be careful how long you leave it on however, because it can cause damage to the skin.

                This is my experience plus two uros and one urogyno approved using both the heat and ice, either separately or at the same time.

                To encourage you, I was actually managing my IC pretty well thru prayer, diet, supplements, ice, heat and frequent walks when I had a stroke! Into the hospital I went, and had to be cathed. They left it in TWO months. My bladder was really damaged as a result of having the cath in, and some mistakes were made in my treatment. I recovered from the stroke completely in a few months, but since Sept. of last year my bladder has continued to give me pain. I've been in the house almost a full year because of that pain.

                I have found that following a very restricted IC diet helps though as I'm sure you know.

                Hope you are doing better now and find the right treatment so you can live a full life.

                God Bless,
                Karol

                Comment

                • #9
                  Originally posted by NEagle View Post
                  First, I'm so sorry for your pain. I've had IC now for over 24 years so I can relate.

                  You've probably heard this already, but an ice pack (laying down, and wrapped in a thin cloth between your legs) helps plus if necessary a heating pack on the lower abdomen also helps. I got the ice pack from the hospital and it works better than any ice pack I've ever used. You have to be careful how long you leave it on however, because it can cause damage to the skin.

                  This is my experience plus two uros and one urogyno approved using both the heat and ice, either separately or at the same time.

                  To encourage you, I was actually managing my IC pretty well thru prayer, diet, supplements, ice, heat and frequent walks when I had a stroke! Into the hospital I went, and had to be cathed. They left it in TWO months. My bladder was really damaged as a result of having the cath in, and some mistakes were made in my treatment. I recovered from the stroke completely in a few months, but since Sept. of last year my bladder has continued to give me pain. I've been in the house almost a full year because of that pain.

                  I have found that following a very restricted IC diet helps though as I'm sure you know.

                  Hope you are doing better now and find the right treatment so you can live a full life.

                  God Bless,
                  Karol
                  I'm so sorry you're having such a tough time. I hope you'll improve soon.


                  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

                  • #10
                    I don't know if this will help, but for me Good Earth Original Sweet and Spicy herbal rooibos tea is very soothing to my bladder. When I am having a flare, I drink it constantly and it can reduce the pain by almost half. I don't know what it is that is in it that helps the pain, I don't know if it is just for me, but it is cheap, available in many grocery stores and online, and tastes good! I've been drinking it for years, before I had the IC, and it took me a while to make the connection as to what was improving my pain. Might be worth a try. I buy it by the case online now!

                    Comment

                    • #11
                      I have found two products, that help keep my ic flare ups stay away, one is healthy life harvest aloe vera 700 mg capsules and Leaky Gut Revive powder from Amy Myers MD. I get both online and use 1 scoop of powder daily in my fruit smoothie every morning. Two separate websites. I still have to be careful of what I eat.... hope this helps others as well. I know we are all different when it comes to help remedies. God Bless

                      Comment

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