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  • #1

    What strategies help YOU feel better?

    We're recently seeing many newly diagnosed members. I thought it might help if we could share what steps we take to help out of a flare. What remedies do you take? Diet changes? Heat? Cold?

    When I feel a flare beginning, I first reach for the Tums --- I can't take bicarbonate of soda due to sodium content and Tums seems to help me.
    If at all possible, my reclining chair with a heat pad --- rest seems to help me most. I love watching old movies and they help me with relaxing.
    I have antispasmodics and pyridium on hand to take if the first two things don't calm the flare quickly. Pyridium works really well, but it stains everything.

    What kinds of things do YOU do that help?

    Thanks for sharing!
    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
    Tags: None
  • #2
    Re: What strategies help YOU feel better?

    I love this question, hoping to see more replies.

    I take my pain killer (although it can take a long time to take effect). Occasionally, I even have to take a combination of 2 kinds.
    I turn up my interstim or change the program.
    I apply a stick on cold/hot patch.
    I occasionally drink water with baking soda. - Last night was one of those times.


    For preventative measures/healing I am currently taking the following.:
    I use pH drops in water.
    Colostrum - taking as of 1 week
    Serrapeptase - taking as of 1 week (a chemical taken from a silk worm to help with inflammation)
    Tumeric pills

    After a week, this kit I bought suggests adding in more supplements including grape seed oil pills, fish oil, immune boosters, etc. The immune boosters are an interesting addition. I know some people has suggested this could be an autoimmune disorder. Would like to be more informed on this because making my decision.

    Metamucil - to prevent constipation since I take opioids

    Comment

    • #3
      Re: What strategies help YOU feel better?

      I will also be starting Effexor soon.

      Comment

      • #4
        Re: What strategies help YOU feel better?

        My go to strategy when I start getting nervous about frequency, pain or pressure is usually half a hydroxyzine.
        If it doesn't help, I try to get to my pelvic floor therapist but she left the practice and moved away. I am now a month out from having any pt.

        Comment

        • #5
          Re: What strategies help YOU feel better?

          Originally posted by Songbird View Post
          My go to strategy when I start getting nervous about frequency, pain or pressure is usually half a hydroxyzine.
          If it doesn't help, I try to get to my pelvic floor therapist but she left the practice and moved away. I am now a month out from having any pt.
          I hope you'll have a new PT soon. It can be frustrating when something is working and we lose the option


          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

          • #6
            Re: What strategies help YOU feel better?

            Thank you so much Donna!

            I found a replacement for the one who was awesome, but I am afraid she may not be as gentle. That is what my former therapist said (that the new one may be a little aggressive).

            She is booked up until February so I guess I'll find out then.

            Comment

            • #7
              Re: What strategies help YOU feel better?

              I'll be following this thread as I have NO strategies to cope with a flare. I feel like I'm on everything already. I feel like I just get panicked depressed and wait it out.
              UTI 3/2015
              IC ,PFD
              prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

              Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

              Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


              Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

              Comment

              • #8
                Re: What strategies help YOU feel better?

                My husband started to flare yesterday after eating strawberries (which I advised him to take prelief with) but didn't.

                So I gave him Donnas trick of two Tums and he said it helped.

                Comment

                • #9
                  Re: What strategies help YOU feel better?

                  I feel that ice really helps my bladder (putting it against your skin), I didn't use ice the whole first year that i had ic symptoms, because i didn't think it would help, and i just wanted to let people know that (for me) it actually helps a lot.

                  Comment

                  • #10
                    Re: What strategies help YOU feel better?

                    I have found that doing pelvic stretches/stretching exercises have helped with severe pelvic pain (for me anyway), the stretches were the ONLY thing that helped me with the severe constant pelvic pain, (so that it was less constant/severe). there are lots of videos on the internet about how to do the stretches if anyone is interested, just type in: stretches for pelvic pain, I did stretches for at least ten minutes straight, once a day or once a week even. I found that it also helps a lot with my bladder symptoms as well.
                    Maybe check with a health care physician first before doing these exercises.
                    Last edited by icn123; 01-06-2018, 01:43 AM.

                    Comment

                    • #11
                      Re: What strategies help YOU feel better?

                      I rarely have bad flares now since my IC is well under control but when I overindulge in foods I shouldn't these are my strategies.

                      Stop all exercise except for walking
                      Up my elavil to 35 mg or 50 mg if flare is really bad
                      Take Azo
                      Eat lots of vanilla ice cream (lactaid brand)
                      Sip water throughout the day
                      Try to relax and distract myself with music or tv I enjoy

                      Comment

                      • #12
                        Re: What strategies help YOU feel better?

                        What has helped me:
                        Antihistamine made a huge difference, helped my pain.
                        Liquid turmeric is a must.
                        Pain meds as needed.
                        Potassium

                        Comment

                        • #13
                          Re: What strategies help YOU feel better?

                          Originally posted by Desperate4Help View Post
                          What has helped me:
                          Antihistamine made a huge difference, helped my pain.
                          Liquid turmeric is a must.
                          Pain meds as needed.
                          Potassium

                          Thank you for getting this subject going again. With the holidays here already, we need to think of best ways to protect our bladders!

                          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

                          • #14
                            Re: What strategies help YOU feel better?

                            Originally posted by Desperate4Help View Post
                            What has helped me:
                            Antihistamine made a huge difference, helped my pain.
                            Liquid turmeric is a must.
                            Pain meds as needed.
                            Potassium
                            Can you explain more about the liquid turmeric? My husband is trying turmeric spice and capsules but I always thought turmeric would burn.

                            Comment

                            • #15
                              Re: What strategies help YOU feel better?

                              Accidentally deleted my answer...UGH!!
                              What helps me the most is Klonopin. It just brought me out of a bad flare. I taper off and then stop completely. I have never had an addiction problem. It takes about 2 hours to kick in, but lasts longer than Ativan. The only other med I am on is Elmiron, which I increase to 4 a day as opposed to 3 a day while flaring. I also think Claritin helps some. But my Klonopin is the BEST! Relaxes my pelvic floor and decreases the frequency. I also follow the IC diet strictly while flaring. Otherwise I am pretty relaxed with the diet. I just stay away from the really bad stuff! Everyone can tell when I am flaring because I usually shed 5-7 pounds-haha!! Lastly, a heating pad really helps. Not long term... but is very soothing short term.

                              Aaarrrggghhh... have you tried Klonopin?

                              Comment

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