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  • Pain all the time.....does it stop

    Let's see where to start. Ok I was DX last month finally with IC. My problems is that I'm in pain just about every day. I feel like I will never feel better. I have had only 2 instills....the first one I got a bad infection but it seemed to help for a few days. The 2 one didn't do the trick at all.

    I am getting a referral to a URO from my GYN and also a pain spec referral.
    I have been trying my best to cut out certain things. I used to drink about 5 or 6 cans of soda a day maybe more.....not sure. I am now only drinking 2 a day. I still have to have one in the am....I gotta wake up

    I have found that wheaties are great...no problems and mashed patotoes or a baked patotoes.

    I'm just really having a hard time with this.....I feel like I'm never going to get better. I feel like this pain will never go away.

    I went to a job fair yesterday and by the time I got home I was so tired and in alot of pain it was crazy. But thinking back on it....I did not use the restroom for at least an hour and half or more. Hey.......ding ding ding the light just went off. lol

    Well anyways....thanks!!!!

    I just want the pain to stop so I can get myself a JOB and be able to take care of my kids like I used to.

    by JOB I mean outside the home. I am a photographer but I'm just getting started and all my work has been on referrals.
    Live your life to YOUR best, and Love to YOUR best!!!



    DX in 03 with Shingles
    Removal of Left ovary due to Cyst in 2005,
    I have had cyst since I started my period as a child age 12
    Hysterecotmy December 06
    IC DX March 07 by PST
    2 "rescue" instills in March 07
    Cyco May 07 confirmed IC
    Uro study June 07
    1st Pain Block July 17,08
    Hydro/Cysto Nov 11, 2008
    12-11-08 was told I had alot of inflamation

    Meds: Allergic to 6 things
    Premarin......taking the gen cause I get it at Walmart for 4$$
    Presique for my drepression :woohoo:
    Abilify for my depression
    Adderall ...found out I'm ADD...makes sense now
    Kolopin for anxiety
    Noroco for my pain
    Valtrex for my shingles as needed

    Sorry if my spelling is off on the meds [/FONT]


    http://community.webshots.com/user/s...host=community

  • #2
    I can so relate. I've been going through the same feelings. It's so hard to come to grips with this disease. I am losing hope that I'll ever be able to have a day without pain.

    I do think the soda is a contributor to you feeling worse. It's nasty stuff and has been known to cause several neurological diseases. I can't drink any sodas anymore. It makes me feel far worse.


    Sorry I'm not more help. I just wanted you to know you have a friend here who understands.

    Take care,
    Moonheart
    http://www.TheCraftyEwe.etsy.com

    Comment


    • #3
      I am so sorry for you. I would maybe stop drinking the soda and see if that could help. I know I do drink them but really have to watch. They do affect me especially diet soda. I would try to drink lots of water as well. It seems to cut down on the acid in the urine I think. I had DMSO treatments for my IC and they did help me but it took awhile. I do not do anything anymore except Urised and I am pretty much not bothered. Every once in awhile a flare up, mostly burning. Try not drinking any carbonated beverages for awhile and see if it gets any better.

      Comment


      • #4
        yes i agree with sweetabby...lots of water helps alot to cut down the acidity in the urine. also, try taking a warm bath twice a day if possible..it helps with pain and is relaxing, becabeing stressed out always makes the pain worse. maybe check with your doc beforedoing the baths if you are prone to UTI...i have heard that if you get UTIs a bath may not be the best idea. heat and Ice, alternating those will help also. but ,s timportant is to relax and get enough rest. sorry I cant help more. just knw thatwe are here for you and know how you feel.

        Comment


        • #5
          HI! Sorry to hear you are in so much pain. IC isn't fun a condition in the least!
          IC is one of those things that you have to go by the book when eating and drinking.......the sooner you get your mind around that the better. I used to think I needed a Diet Coke every morning on the way to work.....then I figured out that was what was causing pain all day.
          Have you tried AZO (it's OTC) for bladder pain? Also you can try Elavil for pain and frequency, it's a prescription.
          I go to an IC specialist and he hardly ever recommends instills etc...because they can make bladders worse in some cases. He just uses meds, and it's worked great for me.
          Good luck to you! Keep us updated on your progress........Roxie

          Double Spinal Cord Stimulator surgery 8/09
          Unsuccessful MiniArc sling surgery 12/07
          Dx'd Hypothyroid
          Dx'd Chronic Axonal Neuropathy & Myopathy
          June 2007
          Dx'd IC May 2006 (after suffering for 25+ yrs!)
          First Cysto 1979
          First Hydro 1981 (Many treatments since then!)
          Collagin"Durasphere" injections for urethra
          Gall bladder surgery Aug. 2004
          Gastric Bypass Dec. 2004
          Dx'd: Barrett's Esphogus July 2004
          Dx'd: Vaginal Atrophy 2005
          Bladder surgery 2000
          Dx'd: IBS 2000
          Hysterectomy (fibroids) 1999
          Laminectomy 1989
          Dx'd: Degerative Disk Disorder 1989

          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

          Comment


          • #6
            Hi,

            I sure do know what you mean!

            I know you probably don't want to hear this again, but giving up the soda WILL really help. I hated that I had to give up my soda, coffee and wine, but in the long run it was worth it.

            I, too, ended up going to a pain management doctor and that gave me life back! They have been altering my meds alot the last few months, so its been very rough on me, but when they have the pain med coctail *right*, I can actually function in a normal capacity. I hope you find a great pain mgmt. doctor that helps you.

            Hope you feel better,
            Kara
            Hugs and Wishes for Pain FREE days!!,
            Kara


            www.loveforearth.net ~reducing plastic waste one bag at a time~

            Facebook: Kara Kaiser
            Twitter: Love4Earth

            Me and my Guccigirl... she helps me through those painful hours!

            Comment


            • #7
              If I were to drink two sodas a day, I would be curled up in a ball with my heating pad and pain pills! Actually a fourth of a cup of soda throws me into a flare.

              Please ask yourself if those sodas are worth the pain. I know it's not easy, but you really do need to avoid them entirely.

              Sending encouraging 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 want to say Thank you to everyone for all the support.

                I know that cutting the soda is a must. I'm trying my best, it truly is not easy. U know how a smoker says it isn't easy to stop....well that is kinda how I feel. I know I can do it because I have done it in the past. It is truly just getting "my head around it".

                Thanks again to all

                I have not had any soda today....as of yet. I got a bottle of water this am. So I really am trying!!!:woohoo:
                Live your life to YOUR best, and Love to YOUR best!!!



                DX in 03 with Shingles
                Removal of Left ovary due to Cyst in 2005,
                I have had cyst since I started my period as a child age 12
                Hysterecotmy December 06
                IC DX March 07 by PST
                2 "rescue" instills in March 07
                Cyco May 07 confirmed IC
                Uro study June 07
                1st Pain Block July 17,08
                Hydro/Cysto Nov 11, 2008
                12-11-08 was told I had alot of inflamation

                Meds: Allergic to 6 things
                Premarin......taking the gen cause I get it at Walmart for 4$$
                Presique for my drepression :woohoo:
                Abilify for my depression
                Adderall ...found out I'm ADD...makes sense now
                Kolopin for anxiety
                Noroco for my pain
                Valtrex for my shingles as needed

                Sorry if my spelling is off on the meds [/FONT]


                http://community.webshots.com/user/s...host=community

                Comment


                • #9
                  HI! Good for you for buying water today instead of a soda!
                  I know the ritual I had.....I'd leave for work and stop at a quick shop near the subdivision for a diet Coke.....and start drinking it there and then.....It was such a habit!....and habits can be difficult to break. BUT you will feel much better not having the caffeine and carbonation in your bladder all day long. Keep up the good work! You'll be feeling better before you know it! Roxie

                  Double Spinal Cord Stimulator surgery 8/09
                  Unsuccessful MiniArc sling surgery 12/07
                  Dx'd Hypothyroid
                  Dx'd Chronic Axonal Neuropathy & Myopathy
                  June 2007
                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                  First Cysto 1979
                  First Hydro 1981 (Many treatments since then!)
                  Collagin"Durasphere" injections for urethra
                  Gall bladder surgery Aug. 2004
                  Gastric Bypass Dec. 2004
                  Dx'd: Barrett's Esphogus July 2004
                  Dx'd: Vaginal Atrophy 2005
                  Bladder surgery 2000
                  Dx'd: IBS 2000
                  Hysterectomy (fibroids) 1999
                  Laminectomy 1989
                  Dx'd: Degerative Disk Disorder 1989

                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                  Comment

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