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  • Seems like a never ending flare

    hi everyone, I seem to be in a never ending flare. It started around sunday and the pain just keeps getting worse. I'm doing everything I'm supposed to do (using the valium suppositories, taking my pain medication every 4 hours, hot baths, heating pad) but i can't seem to break the cycle. I'm tired all the time and can't get myself to eat anything but ice cream. I don't want to go back to the hospital again...i was there over new years. The IV pain meds do help more but I can't stand the thought of being in there again. Does anyone have any ideas?? Thanks!
    I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.

  • #2
    I'm so sorry!!

    Do you think maybe you have an infection?? That would suck so bad, but it would explain your pain. Do you have any of those test strips? And I hate to say it but, today is Friday, so you might want to call your doc this afternoon just to see if you could squeeze in to pee in a cup. You don't want things to get worse over the weekend (which in my case, they always seem to). Let me know what's going on!!
    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
    Lexapro-20 mg
    Aciphex
    Ambien-as needed
    Percocet-7.5 up to 3 per day as needed
    Valium-10 mg x2 per day
    Phenergan-1 at night
    Prelief w/everything
    Now recovering from acute pancreatitis

    Currents treatments that help somewhat:
    Heating pad
    Hot baths
    Ice
    Being VERY still while lying down with legs elevated

    Comment


    • #3
      My doctor isn't open on fridays I did a test strip and it says I don't have an infection but who knows. I've had some added stress (family issues) so I think that may be contributing to the flare. I found out today that my interstim trial is set for feb 24th.....wish it was sooner cause now i'm just gonna worry about that for a whole month. I think i need to de-stress....but its easier said than done! How are things with you?
      I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.

      Comment


      • #4
        You might want to try something with a little more nourishment than ice cream --- when I had my TMJ surgery I drank Boost --- I chilled it until it was almost frozen and it was pretty good. My favorite was vanilla flavor.

        Donna
        Stay safe


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        Comment


        • #5
          Erica, if this continues can you go to an Urgent Care sometime over the weekend? If you do, it is important that they get a culture. Sometimes the test strips can give a false negative and waiting too long to get checked with an infection can be dangerous.

          I hope you feel better soon.............
          Julie Beyer, MA, RDN
          IC Dietitian, Patient Advocate, Speaker, & Author


          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

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          Comment


          • #6
            Thanks Donna thats a good idea.....i think half the reason i'm so tired is im not eating right. Maybe I could even add a little ice cream to the boost and blend it haha. Julie, if this continues I think I will go to urgent care. Hopefully I'll wake up better tomorrow! Thanks for the ideas
            I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.

            Comment


            • #7
              Originally posted by Erica1836 View Post
              My doctor isn't open on fridays I did a test strip and it says I don't have an infection but who knows. I've had some added stress (family issues) so I think that may be contributing to the flare. I found out today that my interstim trial is set for feb 24th.....wish it was sooner cause now i'm just gonna worry about that for a whole month. I think i need to de-stress....but its easier said than done! How are things with you?
              I know, I don't really put a lot of faith in those strips either but I do em anyway
              I can truly understand the stress about having to wait for your trial. I'm just waiting for tests, and that's killing me!! I just want to get it done already and see what I can do that will help.
              I'm doing ok. I'm still dealing with all this craziness plus fighting with the insurance company as to whether or not I really need the Zofran 3x a day or not. My gastro is trying to help. He's written letters saying I've lost 13 lbs since Dec. 1st when they cut me from 120 per month to 24 per month. And that I'm trying other drugs on their "ok" list but they just don't work or have bad side effects. So I'm having a lot of stress too!! I feel ya!!
              The bright note is I think I'm finally figuring out a pain med plan that works for me. That takes time too!!
              I hope this turns out to be just a prolonged flare and you wake up in the morning feeling much better. If not, then be sure you take care of yourself, ok?
              Let me know how you're doing tomorrow, ok? Take good care!
              Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
              Lexapro-20 mg
              Aciphex
              Ambien-as needed
              Percocet-7.5 up to 3 per day as needed
              Valium-10 mg x2 per day
              Phenergan-1 at night
              Prelief w/everything
              Now recovering from acute pancreatitis

              Currents treatments that help somewhat:
              Heating pad
              Hot baths
              Ice
              Being VERY still while lying down with legs elevated

              Comment


              • #8
                hi, katie. Still not doing very well. I only slept for about 2 hours last night...i keep waking up in pain. I'm disappointed my interstim trial isn't until feb. Right now that seems like forever. I think I might have to call my doctor today to talk about how to get my pain under control without having to go into the hospital. Hopefully he'll have some ideas.
                I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.

                Comment


                • #9
                  I'm so sorry sweetie. Nobody wants to be in the hospital. But there have been times where I told my husband Just take me to the hospital, I feel THAT bad. That's when we both know it's really gone downhill. I hope your doctor can come up with something that will keep you home but if he says hospital, you should go. As crappy as that is. Please let me know what happens.
                  Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                  Lexapro-20 mg
                  Aciphex
                  Ambien-as needed
                  Percocet-7.5 up to 3 per day as needed
                  Valium-10 mg x2 per day
                  Phenergan-1 at night
                  Prelief w/everything
                  Now recovering from acute pancreatitis

                  Currents treatments that help somewhat:
                  Heating pad
                  Hot baths
                  Ice
                  Being VERY still while lying down with legs elevated

                  Comment


                  • #10
                    Hi, Erica,

                    You mention that waiting for the 2.24 Interstim trial is stressful -- are you worried/fearful about it? You write that you are excited and nervous -- I know this is so much easier said than done, but try not to worry. I had the trial two weeks ago and am waiting for the permanent Interstim to be input -- the procedure went just fine. I have many of the symptoms you have described and I can tell you are in so much discomfort right now, and I am so, so sorry. My best advice is as many hot baths/heating pads/watching distracting movies or television shows as you can. I worked right up until the trial (looking back I honestly don't know how I did, given the discomfort and frequency) but if you're not in school or working right now or unable to because of the discomfort, then the distraction of television or movies or reading (as much as you can) might help. I also know that it's impossible to retain what you're reading when you're in so much pain, so magazines have always worked better for me in these stages. Let us know how you're doing. I'm so sorry you're grappling with this.

                    Comment


                    • #11
                      hey Erica....

                      hope you are doing okay....give us an update when you can...i have been dealing with bladder infection (culture came back positive last week) and have been on antibiotics for almost two weeks, but now my kidneys hurt and my pain meds aren't helping......just wanted to let u know u are not alone.............

                      i hope you are finding some sort of relief, and i hope that you are feeling better....please let us know when you can!!!! this IC sure is no fun!!!!!!!

                      grouphug:
                      Meredith
                      Dx's: Moderate IC, PFD, Infertility, ADHD, Anxiety/Depression.
                      Current Meds: Zoloft, Adderall, Seroquel, Gabapentin, Hydroxyzine, Claritin, Pyridium, At-Home Instills, Macrobid, Lidocaine Gel
                      Meds that Didn't Help: Ultram (Severe Retention), Tylenol 3 (Itch), Paxil, Effexor, Cymbalta.
                      IC Handbook Link: http://www.ic-network.com/handbook/

                      Comment


                      • #12
                        Hey guys, I am worrying about the trial. I think mostly because I'm afraid it won't work....and i'm counting on it so much to work. I was working but got fired for missing too many days due to flares so right now I'm not working. It gets hard staying home everyday and trying to keep busy and my mind off things. This is a horrible disease....but it helps to know that there are people who understand. Hopefully my doctor will have some ideas to help me out until the 24th. I just can't believe that I'm still in pain after taking percocet every 4 hours and using my valium suppositories.
                        I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.

                        Comment


                        • #13
                          Well....went to the doctors today. The pain got so bad this morning I couldn't take it any longer. He did a urine culture....which was negative. So he gave me a shot of torodal and demoral. That helped a lot...my pain is back down to a 2. He also prescribed celebrex. Has anyone had any luck with this? Thanks all!
                          I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.

                          Comment


                          • #14
                            Stress

                            is very bad for us. Even good stress. We just bought a home in Arizona. This is good cause i feel better when i am there. We live in Alaska, very cold. Any way we got everything packed in out truck with our motorcycle to be shipped to Seattle. This stressed me, plus my youngest daughter is in jail again. This stress's me. So i have to really take it easy.

                            This trial you are going to do is most likely a HUGE stressor. Hopefully it will get done and be in your favor so you can get to the healing process.

                            I will pray for you to win!!!!

                            Jean ann

                            Comment


                            • #15
                              I dont want to burst any ones bubble, what i find for me right now is that sugar is a trigger for me. I was eating ice cream too, and i was in pain. The ice cream was like a comfort food. BUT it irritated my bladder. I am down to eating hardly anything so i feel for you too.
                              Jean Ann

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