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  • i have really slowed myself down, i was up to taking around 6-7 7.5 a day

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    • Wow...I'm sorry but did you say you have a med for continuous pain...that is..you take daily? (like I take MS contin 120mgs 2x daily and the Oxycodone 5 mgs for breakthrough) Or is that your only pain relief? I'm prob rehashing something...sorry...regardless, your doc needs to know your pain is that bad.
      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


      • Originally posted by bcarroll
        i have asked him and he said that hydrocodone is the only thing he can give that will not cause more problems. He thinks that other meds causes the pain more. I went to another dr. in Memphis, and he put me on muscle relaxers, which of course they haven't worked yet, but i am hopeing it will soon. Do you have a hard time getting up in the morning? is this part of the disease. What is going to happen if i keep getting more tired?
        I didn't realize that you were in the Memphis area. What doctor are you going to? Yes, most muscle relaxers make you groggy in the morning. Do you sleep okay otherwise? I probably get about 4 good hours of sleep, of course this is with the waking up to go potty, but during those 4 hours, I go right back to sleep. I have been on Soma several times and can't really tell that there was a difference, but I think it helped me with my sleep.

        Tracey

        Comment


        • Thanks for the quote Tracey83...I was in a hurry last night. bcarroll: my response is much like Tracey83 (I'm a Tracey as well so I have to keep stuff straight for my own sanity) It's wierd. When I wasn't ill with this, I was a very light sleeper (uh, after I had babies of course..prior to, I was a rock) Then, the meds made it impossible to wake up. I would literally dream I was peeing and I couldn't go. It hurt so bad I would sweat through the sheets and roger would have to wake me 2-3 times. (needless to say, we bought a couple more sets of sheets) . That was on MS contin, Valium at night, on antihistimes, sometimes breakthrough meds AND (here's the clincher...Topamax...nice drug for Epilepsy but also for nerve pain...AND makes you sleepy.) He would actually have to direct me into the bathroom. I finally went off the antihistimes and lowered the Topamax dose. I try not to use the other stuff except the morpine derivied stuff. I am so sleepy right now. mid afternoon I get very groggy. My pain has gone back up since going off the antihistimines. But I don't want to go back...
          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


          • I am not sensitive to medicines at all. After I have been taking them for awhile, it is almost like I am not taking anything. Lortab is the only thing that works for the pain, so when I am on anything else especially sleep meds, I have to take breaks so that the effectness comes back. I am on a new sleep med (you know the one with Abe Lincoln and the groundhog?). It is working okay, but I am still only getting about 4-5 hours. I wake up about 5:00 with the worst burning pain.

            Better go for now.

            Bye, Tracey

            Comment


            • Originally posted by Tracey83
              I am not sensitive to medicines at all. After I have been taking them for awhile, it is almost like I am not taking anything. Lortab is the only thing that works for the pain, so when I am on anything else especially sleep meds, I have to take breaks so that the effectness comes back. I am on a new sleep med (you know the one with Abe Lincoln and the groundhog?). It is working okay, but I am still only getting about 4-5 hours. I wake up about 5:00 with the worst burning pain.

              Better go for now.

              Bye, Tracey
              Huh? Abe Lincoln?
              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


              • It is called Rozerem.

                Hugs,
                Barb
                (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

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                • Ahhhh...that's as clear as....my head in the morning...ha, ha, ha...now I'm curious...I'll have to look it up. I almost entered into goggle Abe Lincoln +groundhog +drug just to see what the heck came up. Some Goggle response are so much more entertaining than others...
                  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


                  • Hello all,

                    I have pain all day to. I wake up with and every night as I try to fall asleep I have it. It rules my life. I have been diagnosed with IC for ten years but it has been the last 3 years that things have gotten absolutely rotten. Most days I feel like I am rotting on the inside.

                    I take four ultram a day, many times more, even though than there are days I go without. For two weeks out of the month I take 2 oxycodone a day. I also do versicare and prymidium. I used to take aleve, but it caused to very SERIOUS ulcers in my stomach so I can only use tylenol which won't work for me at all.

                    I hope we are all at some point pain free from this disease.

                    goodluck

                    Comment


                    • I have pain all the time. Following the diet does not help me at all, even though I have always been on the bland diet due to my stomach issues. I cant believe how many of you are on pain meds. That is great that your doctors actually prescribe them. I cant get anything for pain from my doctor.
                      Jen

                      Comment


                      • Hey yankee,
                        I haven't been to the boards in a while and so sorry to hear everyone's pain. I've had the disease as well of about 9 years. I'm 47. I have finally found my favorite medication and I have been on them all. Codeine helped a bit but made me the ***** from hell. I used to tell my doctor it was the medicine and he said that was impossible, funny how my demeanor changed when I quit taking it. I then went to demoral which made me very sick to my stomach all the time and made me lose my last job. I've been out of work a year and still trying to make things work. I don't want to be disabled, but think it's got to happen if I want to keep my house. I graduated from demoral to morphine which I hated even though it did help the pain a lot. I am now on fentynl patches. I have pretty much taken myself off of every other drug such as neurontin, elmiron, and a couple of others due to the fact I can't afford them. If my doctor knew he would throw a fit, but if I can't buy them I can't buy them. I have to keep the one that helps the most and thats the patches. They help the pain but nothing takes it away. I'm fairly sure my days of working are over and that just kills me. That's the most painfull part of this disease for me. I'm a social butterfly who can no longer fly. It's devastating.
                        Karen

                        Comment


                        • Jen....
                          find yourself a good pain clinic. Do not live in pain. It's hard to find a good pain doctor but it's worth the search. I'm so sorry you're hurting. I know beliveve me I know how it is.
                          Karen

                          Comment


                          • Hi Karen,
                            Thanks for the advice. I am going to look into getting into a pain doctor, but I think I need a referral to see one, and God only knows how I will get a referral as I highly doubt my urogyne will refer me to one. She does not even believe in giving pain meds for IC. I may just have to try and see my pcp and see if she will give me a referral. Thanks for replying and for the advice.
                            Jen

                            Comment


                            • I just don't know why this continues!!! Jesus...pain is what IC is, whether it is the mild discomfort of mild IC or debiliting pain of severe IC. I finally "won" my social security case in November and the judge actually apologized to me for making me suffer so long. There is always some sort of pain that needs to be addressed. I am constantly on Morphine ER(and my bladder doesn't "look" bad, but I have a very high mast cell count and can hold very little urine) and generally have to take 35-50 oxycotin 5mg pills for breakthrough each month. I also have the stuff that turns your pee orange, which has turned out to bigger blessing than I thought. I take 15 mgs of valium each day to allow my bladder to relax enough (and my adhesive tissues in my tummy) so I can pee. I also take Topamax for nerve pain and anti depressants. I was against all this to start with but I became so desperate for relief....My pain doc tried nerve blocks, epidurals, other such things. He tried to implant a stimulator and it just sent me into spasms (talk about pain...I think my toes touched my head from the back everytime he attempted to find the "sweet spot") On top of all this, I've just been diagnosed (like 3 days ago) with Rheumatoid arthritis. I had some hope I might work again. I have a Master's degree in teaching special education kiddos...I am absolutely disgusted with myself and angry. My family has been less than supportive now with this new diagnosis. It took me 3 years to finally get my husband to understand IC and our marriage was just becoming "normal" again. this new diagnosis, he is withdrawing from me and my 17 year old thinks when I say "I'll need a little more help with some things involving housework" I mean she'll be strapping on an apron and a feather duster and spending her freetime doing the housework. My husband and youngest spent the day in the yard, I mopped the kitch, bathroom, cleaned the bathroom, did laundry, swept the entry...changed the youngest bed (because she was working so hard outside), and dusted and the eldest threw a fit because she had to vacuum the front room, hallways with pet deoderizer. She refused to do anymore because she had a date. My husband was furious with me because I did all that work and he felt she should have. But he would have been ****** if he had come in and it wasn't done. She's 17. damned if I do...But she didn't get any money for the night so that made her angry as her sister was given a 10. The only thing my husband said was that I shouldn't do all that work and he had talked to her the night before about it...(Thus, the communication continues it openess...not.)

                              I guess from what nightmares I read I am lucky in that I have such wonderful docs. My husband got angry yesterday and told me I needed to get doctors closer to my home. (I see docs about 20-40 mins away dependiing on traffic, and my meds make me sleepy) But there are very few that I would trust like I do the ones I have now. My GP is wonderful and completely trusts me. It is stories like yours that scare me.

                              Good luck to you all.

                              Tracey
                              Last edited by MakinIT; 03-31-2007, 03:09 PM. Reason: addition of words
                              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


                              • Atarax

                                I took Atarax for the first time tonight and had a reaction to it. I became very flushed and had a prickley feeling. I called the AARP nurse and she suggested that I not use it again. Has anyone else had this reaction. I use Vicodine, but wonder why Percocet is now the med of choice.

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