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  • Who has everyday pain?

    I was dx'd in Sept. with IC. I also had several tears in my bladder and areas of Glomerations. I have had pain everyday since that procedure. My bladder is a little better as far as how much I can hold. My pain increases as the day progresses. It can either be a very bad aching to a sharp pain in between my legs. I have pain when my bladder fills (and I still try to hold it as long as I can) and pain when it is empty. I take Percacet, usually in the pm. No more than 1-2 a day. That has helped a lot. I am wondering how many have pain every day and what you take, and how often? I am taking Hydroxizine at night. Couldn't take Elmiron bc of headaches. I do have to say that the pain meds. help with my bladder and with my FM. I can function better when I take them. Those of you who have FM. Do you have the bladder pain every day? I was thinking maybe there was a correlation between the pain of FM and the bladder. (that we may be more sensitive to pain?) Thanks, Dana
    DanaW

    "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

  • #2
    grouphug grouphug grouphug
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie

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    • #3
      I still have pain everyday but not as bad as it use to be. I take the heparin at home 1-3x a day and that really seems to help me alot i also use perocet 10.325 for pain.
      Medicine taken daily or as needed:
      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
      2. MS.Cotin 100mg 3x daily
      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
      4. Fentanyl 100 mg Change every 48hrs.
      5. Gentamicin 80mg install after each rescue treatment
      5 Leviquin 500mg self start as needed.
      6. Klonopin 1 or 2 daily as needed.
      7. Prosed/DS as 1 every 6hrs as needed.





      I have IC, but IC doesn't have me anymore!

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      • #4
        I have everyday pain. I take pyridium plus 4 times a day, and a new drug for bladder spasm. I also take a lot of ibuprofen for my pelvic pain. I also take hydrocodone when my pain is worse. I am never pain free. There are just degrees of pain. The pyridium really helps with the burning. It is not gone with the pyridium, but it does help. Good luck!
        carly

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        • #5
          I don't get any burning, just the pain. Dixiefireball? Do you take percacet every day?
          DanaW

          "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

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          • #6
            oops! I am wondering how many Percocets you are prescribed every month? I get 30. Which means I am only able to take one a day. Sometimes, if I am having a worse day, I will have to take 2 and then I have to suffer to make up the difference by only taking a half a pill.....how many do you all get a month?
            DanaW

            "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

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            • #7
              I have pain everyday with the mornings being the worse. I am on Lortab 5 for pain which only takes the edge off, never taking the pain completely away. I have an appt with the pain clinic on the 12th and my doc has discussed oxycontin and percocet with me saying that is most likely what I will be prescribed.

              I also take 2mg of Valium twice a day (which seems to be working somewhat) and pyridium up to 4 times a day if I am hurting worse than normal.

              As for only getting 30 a month, have you talked to your doctor to let him/her know that its not enough? Sometimes, just telling them is enough. Have you asked about other meds such as valium?

              Please keep us posted and let us know how you are doing. My thoughts and prayers are with you.

              grouphug

              Morgan
              Morgan Stone

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              • #8
                I'm so glad I came across this post. So many people talk about having flares, but I am in pain everyday (the degree of it does vary) I also have FM (and many other dx!) and wondered if that was why. I was just dx w IC w a cysto on 7/19 and my pain has only gotten worse- stabbing "knives", extreme tenderness (can't wear clothes at times ) and burning, pressure. Right now (since the surgery), I take 660mg Vicodin every 4-6hrs (right after, I was taking 2 at a time). Before that, I was taking tramadol (ultram) 2 every 6 hrs. I found that (at least w FM) it doesn't work unless you take it continuosly- but I always "fear" running out as well (damn ins- last time they wouldn't refill it beac I was 4 days too early- well that's 4 days of extreme pain!!). I'm going to pain dr soon so hopefully they can help more.

                Just don't stop until you feel you are getting all the relief you can. for a long time I just "sucked it up" (of course, I had to stop wrkg bec of it) and now I realize that if I don't like the response my doc gives, I have to try another- there are a few out there that understand. Hope this helps and you get some relief soon!!
                Chinacat :butterfly "I can be changed by what happens to me. But I refuse to be reduced by it" Maya

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                • #9
                  I have had some remissions in the course of my 4 years with this disease, mostly in the first year after I was diagnosed. I would be sick for a month or so, get better for a few weeks, get sick again for another month or two. Then by the second year it became pretty much 24/7. Some days were a bit better, other days a bit worse, but I had symptoms all the time.

                  Then I was put on Elmiron and had a wonderful 5 month remission, but for some reason the IC pain came back and has been constant now for 3 months, despite hydrodistention. I had a few hours here and there when I thought maybe the pain was going away and I felt better, but never longer than a few hours of relief, so now I am on Percocet, 4 per day. I have a two month supply at this point and if I end up needing pain meds long term they will look into probably methadone for me since I am allergic to morphine.

                  Blessings, Lori

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                  • #10
                    I guess someone DID start an everyday pain thread...thank you! I am severe 24/7 bladder pain and have for 4 years, 6 months and 8 days now. I have never felt even a letup except when I was under general anesthesia

                    Not sure if you saw the post but I too was trying to gauge just how many here on the board are in constant pain in the "describe your pain" thread. I do not relate to the word "flare" as it related to my disease. Ironically I just noticed that Pain Management is Under Managing IC FLARES LOL.

                    My bladder pain is life altering and has rendered me bascially house/bed bound for that entire time. I must take heavy duty pain meds and have almost that entire time but even with those the pain only decreases some and the side effects are horrific so it's changing out one "sick" for another in a way.

                    As I said in the other thread, I, along with my doctors do feel there are a lot more 24/7 constant or nearly constant IC pain sufferers out there compared to what was first thought. In my case, I would be willing to increase any other symptoms if I could just get a few minutes a day or God Forbid a few days of little to no pain. Diet has NO EFFECT on my pain levels nor did any of the standard IC treatments/medications. Thanks for starting the thread.

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                    • #11
                      Pain, Forgive me for being so nosy, but I was wondering if you also have tried Interstim?

                      Diet doesn't have a huge effect for me - I mean, I do have things I can't eat or drink, mostly juices/fruits, anything with vinegar, and so many pills put my bladder into a flare that I can't take most meds they want me to try, but other than that I can eat most anything even spicy foods and not notice an increase in my symptoms.

                      I often wonder if there aren't several different "varieties" of IC, you know, several different diseases or causes that all lead to the symptoms we call IC.

                      I'm kind of leaning toward the idea of Interstim...I'm not so sure I want to be on pain meds all the time.

                      This is awful, I know I should just be grateful to get some pain relief, but I do have some side effects (I am feeling sick to my stomach some, not bad enough to throw up but bad enough to want to lie down most of the time, plus I feel headachey for some weird reason, and kind of tired or out of energy) and what is most troublesome is the last couple of days my Percocet hasn't been helping as good as it did before. I am finding that I only get about 3 hours of pain relief and then my pain comes back.

                      I am so scared that means I have tolerance and it won't work for me anymore. I'm leaning more and more towards Interstim as a treatment because of this fear that pain meds won't work for me or I will need more and more. Which I really don't want at all.

                      To be honest I am really feeling down today, maybe it's just the side effects of Neurontin. I'm just having a hard time accepting that I will always feel bladder symptoms even if I'm on pain meds, and I will always have side effects from pain meds, and that I'll never really have my old life back. It's a hard thing to accept, and I guess I am still in a psychological struggle with it.

                      I've heard stories of people gaining 70 lbs. their first year on methadone and that scares me, I am already heavier than I ought to be and I don't want my husband to stop finding me attractive. I personally think that heavy people are just as attractive as thin people, but I know the rest of the world doesn't see it that way so I am worried about my husband's reaction.

                      I know that is such a silly petty thing to worry about, I should be worried about stopping the pain and not care about that stuff, but I still do.

                      I'm just really struggling today. It helps me a lot just to put my feelings down and to feel "heard" and stuff.

                      Blessings, Lori
                      Last edited by ICLori; 07-29-2004, 09:41 AM. Reason: spelling errors/typos

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                      • #12
                        Lori, please be sure to do a lot of research re: interstim. Almost all research I have done..at the clinical level, patient level, etc. indicates interstim is primarily for frequency and urgency NOT pain and is not an optimal choice for primary pain IC patients. There are perhaps exceptions to that but most of the "official" research indicates that the "goal" of the interstim is to interfere with the "urge to go" nerves. So if the only "pain" you feel is that "gotta go" uncomfortableness..perhaps. I'm sure several others will chime in here. Since PAIN is my overwhelming symptom...with much lesser frequency and urgency (only a futile attempt to relieve pain really which never works LOL) not an option for me. Please be sure and do a lot of research...we are our own best advocates.

                        P.S. I've gained about 65 pounds since I've had the debilitating 24/7 constant pain. Not just the meds but the inability to be active at all.

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                        • #13
                          Hi, Pain, thank you so much for your reply. I too have gained weight from eating due to stress and inactivity when I am hurting. I don't look forward to gaining more.
                          I feel so ashamed too about it because I was a soldier for many years and used to be in good shape, a long-distance runner.

                          It's hard for me to say what is my worst symptom - pain or urgency/frequency. And most of my pain IS from urine being in my bladder - I am convinced that if the urgency/frequency were taken away, I could maybe not take narcotics...I do think that for me the urgency/frequency is the worst part.

                          So I think I am going to look into Interstim. Now that the pain meds are causing me pain/urgency/frequency instead of alleviating them, I really am quite desperate.

                          Blessings, Lori

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                          • #14
                            best of luck to you, lori. i hope you can finally find a treatment that brings you some much-needed, deserved relief.

                            i wanted to respond to the issue of weight gain; i know it's a hard thing to deal with, it seriously impacts our self-esteem, and i also understand the fear that your husband will no longer find you attractive. however, try to remember that all these messages are drilled into our heads from birth; we are constantly bombarded with advertising and media telling us that rail-thin, big-breasted images of female beauty are the norm, when in fact, *of *course they aren't. this type of media infiltration is just another example of the pervasive sexism embedded in our society; women are *not cardboard cutouts, we come in all shapes, sizes, colors, ages, and abilities and we are ALL beautiful, dammit. so, to any man (or woman, for that matter) who would leave his wife/partner because she gained weight, i say **** 'em, and karma will bite him where it hurts when he least expects it.

                            you are beautiful, no matter what your size. know this.

                            xo,
                            heather
                            .

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                            • #15
                              I have only IC and I have pain constantly everyday. I was on a lot of meds but had to go off them for a test and found out they were no longer doing anything. I am left now with just my ultram but it is just not cutting it. I am going to have to go to a pain MD (when I can afford it). The hydro stopped working for me and the antidepressants both tricylic and ssri did nothing (although I am dependent on Paxil now and have to be weened of it). I have also gained 30 pound due to the sugar cravings caused by Elavil, it is not really coming off but I have stopped gaining, when I am able to walk on my treadmill I can loose 1 or2 pounds that week but gain them back when my activity decreases due to pain.
                              Good luck

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