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  • #61
    I would be in awful pain every day, if I didn't take antibiotics, which keep it away. I have had pain daily at one point, and it was a nightmare!

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    • #62
      I too have pain everyday....every single #&@! day. I am in the process of going to see a PMC doc since my uro's standard comment to me is "I don't want you to get addicted to narcotics" and I suffer a lot.

      My pain is different each day but always there from deep ache in the bladder and hip area to shooting and stabbing pains through bladder, hips, down the front of legs and up to the right side kidney area. I also have fainting spells when the pain is at it's worst and also nausea and vomiting too. I hope this pain doc can help me I need some relief.
      My Furbabies


      IC Diagnogsed 8/16/2004
      Fibro Diagnosed 07/25/2005
      Prolapse Vagina 10/16/05 With upcoming surgery to correct. 12/16/05 Just a couple of days away now.
      Gee isn't life fun??????

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      • #63
        elmiron

        Dana,
        I think the elmiron is very important. Since you cannot take it orally, has your doctor considered having the elmiron installed in your bladder? This would probably help alot. Hopes this helps.
        Maryann

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        • #64
          Boy, Blondie, your pain sounds like mine....Yes...I am in severe pain everyday and have tried almost everything but I keep researching. I can't use interstim because my pain nerves have wrapped around my motor nerves and I arched to the point of painful muscles for days afterwords. I've had flouroscopies to look at the nerves...I've tried at home cathing...which is easy for me, but tears me up...yes,...even the little ones..dammit, My pain is deep in pelvis and in my bladder.... OH...I've had pelvic floor therapy which was great...I can't keep it up though because my insurance runs out. My chiropractor does myofascial release...hurts like hell but feels better after...breaks up the adhesions joining together. I take 180 mgs morphine day (90 AM, 90 PM; 200 mgs topamax, split in half; 400 mgs zonegran...those two drugs slow down pain at the source...end of nerves) I also take atarax, 50 mgs. I have 10/650 mg of percocet for breakthrough pain (50, if needed, usually I don't need more than 50in 5 months) and can take up to 20 mgs of valium if needed. With my PM drugs, I take those, crash within 15 mins, wake up 2 hours later and spend the rest of the night fighting to stay asleep. (project with my shrink in the next few sessions)

          OH, I also take well butrin and estrace (hystercetomy....) Anyway...I think there are more of us in severe pain than we like to admit..The pressure to just suck it up. and we can't. It freaking hurts. What can I say.

          Good luck
          I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

          Medications I CURRENTLY take:
          90 mgs Ms contin (45 mgs Am/PM)
          Percocet as needed
          Topomax 100mg day
          Ambien 10 mg bed
          desipramine 25 mgs




          If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
          Albert Einstein

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          • #65
            Hi, I'm Lorraine and have been a member for a long time, just don't really post. I read your post though and felt I should reply. I've had IC since 1993. I have daily pain which goes from bad to worse. I take vicodin 10mg every 4 hours if I need to.
            One thing I have learned is not to let your pain level get to high. The longer you wait to take your pain meds, the harder it is to control your pain.
            I would love to have a remission but for the past 3 years or so it's been the constant daily, tell time by your pain for me.
            I hope you get to feeling better. Remember you are not alone.
            Peace,
            Lorraine

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            • #66
              Hi Lorraine..that's good advice...were you sorta speaking generally or to anyone in particular? (This Thread has taken on life of it's own) I sure agree with you on the pain thing but then there is that little voice from, I'm sure, media talking heads saying "BAD BAD BAD" when Ido take anything in addition to my reg. meds. (hey, I take 180 mgs/day of morphine.....also take 15 mgs valium per day PRN and 10/650 percocet PRN for breakthrough pain...today was one of those days...I was miserable, to put it lightly..couldn't even stand straight. Ugh)

              Anyway...I go back and forth on reading this...I think I read at the very beginning of the page that people usually only post when they have issues or are in pain so new people not to get discouraged. This won't necessarily happen to them.

              have a great day....bye
              Last edited by MakinIT; 01-28-2005, 10:49 AM. Reason: forgot a word
              I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

              Medications I CURRENTLY take:
              90 mgs Ms contin (45 mgs Am/PM)
              Percocet as needed
              Topomax 100mg day
              Ambien 10 mg bed
              desipramine 25 mgs




              If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
              Albert Einstein

              Comment


              • #67
                Hi! I also have pain on a daily basis. I have had pain meds in the past but it is hard to get them from the doctor because he is afraid of addiction. My best pain treatment is lots of rest and my heating pad. I use moist heat. It seems to help the most. When my pain gets unbarable, I go to the ER. for help. Hang in there.
                I also think I have fm and often wonder if it is realted!
                Last edited by sweetpea2555; 01-29-2005, 06:28 PM. Reason: add a comment

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                • #68
                  I've learned from this experience that docs are living in the stone age in terms of pain control. Yes...these are powerful drugs and yes we will more than likely get physically addicted...It will suck going off of them. But not as bad as suffering the pain of this disease. I've been in and out of hospitals for various things over the past 20 years and watched this management of pain change and grow. At 19, I had a very painful syndrome that had me paralyzed for a while. My muscles shrank, (atrophied) could barely breath, and I was increadilbly scared and in pain. But they gave me nothing for anxiety or pain because...You got it...I might get addicted....As I got older I noticed the hospitals had pain scales, and had all kinds of literature available on "how you heal better when you aren't in pain" and nurses constantly asking you to rate your pain...if it goes above a certain point..boom, medication. It's still that way, in hospitals, especially on surgical floors. So why don't these docs read the same literature that shows that patients heal faster if pain is managed? I know for a fact that when my pain is controlled, I can get household chores done, maybe do a little work in the yard, maybe even start thinking about work. But when the pain is bad...Holy smokes...all I can do is stay curled, as you said, in a little ball. That certainly isn't helpful or healthly and winds up cramping your muscles and hurting you worse!! And how can you possibly stay positive or think of a future? You know, as a teacher, an expectation I had was too stay current on the most effective current teaching practices...In fact, to keep my license current, I have to take a certain # of classes of every 5 years. I just don't think these docs read the literature or go to conferences. (Hey..It doesn't say on their med. license wether they were A students or c students...that is wanting to continue their learning) It's very frustrating and I feel for you and all people who have such narrow minded docs. Don't know why, but it seems uro's are the worst. Maybe they don't get as much training in narcotic admininstration or because most seem to old men (mine is a young woman..she still only does valium as the "heaviest" drug but she is a sweetie)

                  Tracey
                  I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                  Medications I CURRENTLY take:
                  90 mgs Ms contin (45 mgs Am/PM)
                  Percocet as needed
                  Topomax 100mg day
                  Ambien 10 mg bed
                  desipramine 25 mgs




                  If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                  Albert Einstein

                  Comment


                  • #69
                    I'm posting this message while at home, alone, because I couldn't bear to go out to grandma's house with my husband and kids......I've been on elmiron since about March of '04.....I thought it was the cure...but recently, the pain has returned....I'm new to IC and just don't know what to do.
                    Making it...One squeeze of the charmin at a time...

                    Comment


                    • #70
                      Hi PStalsby....You know...I'm sorry, I kinda had the same experience too...elmiron was touted as "the cure". Unfortunately..the disease has different reasons it has started or worsens or gets better. I don't know what your doctor has given you for pain, if anything. If you've read this board enough, you can see that doctors are ALL over the place in terms of pain relief. If you have pelvic pain, you may need pelvic floor therapy. That's a specialized physical therapy. They train you to relax your pelvic floor muscles. I'm in that place, again. I need to have that training again. I also have a chiropractor that I see every week that works on my pelvis and keeping the muscles loose in my pelvic floor. (He does that from the outside...a PT does that from the inside, so to speak) I just feel fortunate to have doctors willing to listen to me discuss my pain issues, and willing to help me. I'm not sure what your med situation or doc situation is. You can Private messageme if you'd like, or anyone on the thread As people have said to me "things will get better" this thing goes up and down. But, since you are new and haven't tried all the fun stuff out there, you may find something workable. Keep your spirits up

                      tracey
                      I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                      Medications I CURRENTLY take:
                      90 mgs Ms contin (45 mgs Am/PM)
                      Percocet as needed
                      Topomax 100mg day
                      Ambien 10 mg bed
                      desipramine 25 mgs




                      If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                      Albert Einstein

                      Comment


                      • #71
                        PStalsby,
                        Sorry to hear you are in pain. I know what you mean about the elmiron! It used to work for me too. Don't give up. There is hope out there. You just have to find the right doctor until you find help. Hope you get to feeling better soon.

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                        • #72
                          Thank you very much....I'm gonna get in touch with my doctor and see about my options.....
                          Making it...One squeeze of the charmin at a time...

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                          • #73
                            Hi, wanted to respond. Yes, it is daily. I take Neurontin which has helped, but it really doesn't take it all away, just helps it. The nerve pain and burning are the worst. I have the vulvodynia too. Fun, fun.

                            Marsha

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                            • #74
                              My post was just to everyone in general. It seems the longer you have the IC monster the more you learn. I tried elmiron and was on it for 2 years before I gave up. It just didn't help me at all and caused stomach problems. I was even taking it out of the capsule and emptying the powder on my tongue. It was said at the time that the capsule itself was causing stomach problems. Didn't help and I so wanted it to.
                              Today I've been in bed most of the day and on meds all day. In addition to vicodin I take elavil 25mg twice a day, valium 10mg twice a day for my pelvic floor issues, atarax 1 in the morning and 2 before bed, effexor 75mg daily.
                              I've had pelvic floor therapy and it did help for a little while but then it stopped working too. We just have to know that we are not alone and that some people are worse off than us. Thinking that way helps me to handle myself a little better.
                              I wish everyone some pain free time.
                              Lorraine

                              Comment


                              • #75
                                PStalsby. Where in Louisiana are you located. I live in Louisiana also. I live near Mansfield LA in the Northwest part of LA. About an hour South of Shreveport....I to tried Elmiron. I to quit b/c I had side effects from it. I have urgency, frequency and daily pain with my IC. I have just recently been approved for SSD and I also have a Interstim device...but right now it does not work right.

                                For my daily pain I take lortabs which I get certain amount a month from my OB/GYN. The rest of the time I take Ultram. I find that the Ultram works good for me. I know alot of people cant take it and it's effects wear off faster than most pain meds. Ultram is not consider a narcotic but it has narcotic effects on the brain. My uro does not like to prescribe narcotics for me, as alot of drs do. I hope you will be able to find pain relief.
                                Patricia

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