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    #16
    Tim!
    I am so sorry to hear about your pain and suffering. I live with chronic pain 24/7 as well, but I don't think my pain is as bad as yours. I can sort of live with it thanks to 2400 mg Gabapentin and 25 mg of Amitriptyline every day. Some nights I wake up from stabbing pains in my left leg and then I am not well rested the next morning.

    I can sympathize with your situation. Try to soldier on as best as you can, Tim. Better times are coming for SCI's. I am sure of it.
    Step up, stand up for:
    http://www.stepnow.org

    'He not busy being born is busy dying." <Bob Dylan>

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      #17
      I feel for all of you. I can't imagine the emotional/mental pain, limitations and discomforts of SCI with awful physical pain added to it. I can't believe people must live this way. It's a living hell in every sense of the expression.

      I remain positive about research though. Breakthroughs happen and it only speeds the process of solving a puzzle.

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        #18
        Tim, I thankfully don´t have pain so I cannot say anything about that to help you. All I can say is hang in there man, this SCI crap is full of ups and downs, who knows maybe tomorrow you´ll feel better. Don´t do anything crazy dude.
        T6 complete (or so I think), SCI since September 21, 2003

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          #19
          can you find a new pain management clinic or doctor that will work harder to get rid of the pain? i know how difficult it is with people that have severe pain like yourself, but that doesnent excuse the medical people, you should be caling them between visits to tell them it not working.
          cauda equina

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            #20
            I often tell people that i'm alive but not living. The only things that made it better was noise or distractions. It was 23 weeks of not knowing much of myself. I still have the CP but at a level to atleast type and share my thoughts. I hate when 2 or 3 AM comes and i'm awake. Too much silence seems to just nourish the pain. But when times become overwhelming, I call my kids or think what becomes of my kids after I pull the trigger. Thank GOD, its only once a month or less that I go through this lately. But, during the 23 weeks the only picture on my mind was my old .380. Tim, I can't say it'll go away but with time we either get better or learn to fool ourselves that the pain is some what small.
            AstrO

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              #21
              Hang in there bud. I had nerve pain like a muther when I first got out of the hospital. It felt like I was being fried in oil. I told my Doc SCI is bad enough, but then having to deal with the pain is just too much. I understand where you are coming from.

              He put me on Neurontin. It didn't seem to work at first, but I kept taking it. I got up to 2400mg a day. I also started sleeping on my belly. It finally started working. I took 2400mg a day for about 6 months, then the pain seemed to slowly go away and I weened myself off of the meds.

              It's been 7 yrs since I've taken any. Occasionally I'll get that slight feeling of that pain again. If I had a long day or something. I'll go to sleep and wake the next day feeling better. I think it might have something to do with sleeping on my belly. Have you ever tried sleeping on your belly?

              Any girls out there that don't sleep on their bellies? Well, then, can I? J/K
              Dats a good bar line I use sometimes.

              Tim, I wish you luck. Hopefully things will get better. If you haven't tried Neurotin, try it once. You may get relief.
              Last edited by rathole; 24 Sep 2006, 1:42 AM.

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                #22
                well. it's kind of obvious from the posts who has similar pain and who doesn't.

                not much more i can say, except don't expect it to go away. been with me 20 yrs and many other chronic sufferers.

                but, please don't let that discourage you. just know there are many others out there living with it. there is some encouragement to be gleaned from that.

                i have days i cannot get out of bed and i think sometimes i would just like morphine or something to get me through those days. i literally lie in 1 position because any movement hurts.

                then there are days i can almost remember what it was like to be pain free.

                there's no question. pain sucks so much more than paralysis.

                try to hang in there.

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                  #23
                  Man, its 3:12 and i'm awake with only my sorry a.. pain. I hate it. Don't mean to hijack your thread Tim, but what I said earlier about the late night pain is here. I'm so sleepy but I can't fall asleep that I want to cry. I don't cry because I know its not gonna help. Although I dhould try it antways.
                  AstrO

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                    #24
                    cry. scream at the ceiling. i do.

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                      #25
                      Don't be a quitter. Right now you are just too deep in the forest to see that you really don't have a problem. The key is that I just lost my train of thought because I just saw all the beer bottles taken out from the basement. I'll get back to you.

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                        #26
                        no death wish here, just want a fair shot at life.

                        it sucks being a quad, it doubly sucks being a hi quad, but friggin hell if these are capped with 24/7 pain. to boot, i believe it all triggered by bowel, poor digestion, and incessent uti's. i'm always chasing better md's for fresh eyes looking at me. still, it seems because i face a few issues simultneously, no md can get it right. god forbid they confer with each other.
                        today i awake to stomach pain, high spasms, too-dry mouth, a bp that put me into disreflex, limb pain, and junk in my urine despite just coming off of 7days of macrodantin. post (decent size) bp, i've got stomach pain, leg and shoulder pain. my stomach hurts when touched, especially near my sp tube. i can't ever eject stomach air entrained.
                        i take the right precautions, i try the right lifestyle. 24/7 out-of-paper caregivers which i hire and train. drink water, laxatives, pain ...
                        pain doctors? you have got to be kidding, even living in NY, i find you're worthy of 5mins of their time. i'll give you names. they suck.
                        yet my head remains focused undeterred, my caregivers recoil in horror when they witness my hell.
                        truly, i'd rather live, but why like this?

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                          #27
                          neurontin [gabapentin] ,fentanyl pops, protonix, zelnorm, ducolax pills 2x/day, go lightly,
                          tried everything, screw this pain and zero life

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                            #28
                            Tim,

                            Your dry mouth is probably the result of the medication you're taking. I wouldn't be concerned with that one unless it's just annoying.

                            For spasms, I took Zanaflex and Baclofen for years. I took those along with Imiprimine. All these together kept my anxiety in check unknowingly to me until I quit them all.

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                              #29
                              I can't offer any constructive advice Tim - but I sure hope it does get better for you.

                              I am thankful that I don't suffer pain and when I read posts like this, I'm reminded of how truly lucky I am.

                              Keep the faith.
                              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                                #30
                                Originally posted by Tim C.
                                neurontin [gabapentin] ,fentanyl pops, protonix, zelnorm, ducolax pills 2x/day, go lightly,
                                tried everything, screw this pain and zero life
                                Tim-
                                I know you've run the gamut of pain relievers, and work with your many dr's trying to find pain relief, but I can't remember if you've tried Topamax instead of Neurontin. I know that for me(and I know we're all different, and my neuro pain isn't anywhere near yours, but it still gets up there) Neurontin didn't do much for my pain and the negative side effects made things worse. Maybe it would help you, it might be worth a shot.
                                'Chelle
                                L-1 inc 11/24/03

                                "My Give-a-Damn's Busted"......

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