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    #16
    Originally posted by Evonne View Post
    Cowboy,

    The patches did work somewhat for my nerve pain, but the side effects from them were so bad ( dry mouth, dizziness, spacy, memory loss etc.) I got off of them. I had to take methadone to ween off the patch. I only took methadone for a month or so. I now take Topomax and Cymbalta for my nerve pain, does not do great but takes the edge off.

    Evonne
    Evonne,
    I saw after i posted in response to Cowboy about the Topomax that you actually take it. When I took it, it was not good, it took me to the edge of not wanting to go on and I am a person who does not go to that place often and untill the Topomax I had not really gone there before. But I know that not every drug effects every person the same. But I can say that I was a wreck on the Topomax. I do take the methadone for my pain and i feel that it really works great along with Cymbalta and Gabapentin.

    Stevie P

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      #17
      Originally posted by Cowboys_Place View Post


      Now I believe I have another uti the third in the last 2 1/2 months bring on 2013
      Cowboy,
      Since I have been using D-Mannose from the company NOW I do not get anymore UTI's and it has been about 5 years. I thought I had one once and I was going to see the Urology Clinic at Craig and they said "you have a uti" and I said "no i can't i take D-Mannose" and when they looked they found two stones in my bladder, one was as big as my thumbnail. Once they were out I was fine. Try the D-Mannose it really works great. I have a coupon code for a place on line that will give you $10 off your first order and free shipping if you spend $40 or more.

      Stevie P

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        #18
        Originally posted by Cowboys_Place View Post
        I had to stop using the patches after two weeks it was absolute misery, of course the Dr. at the pain clinic I go to is on vacation and we'll be back next Wednesday. However that didn't stop my morning attendant Melinda from calling his nurse and letting them know in no uncertain terms was this acceptable. So get this I don't know where he's vacationing but his nurse cannot call or fax him they can only contact him through e-mail. Melinda let them know we wanted something else done and started by noon so at 1130 I got a phone call saying of the Dr. wanted to start me on Lyrica. Yes I have read the horror stories on here about it but I'm running out of options I'm also trying to get into the spine clinic at UC Davis Medical center.

        Evonne, he prescribed methadone to me because he says it's too easy to overdose on and I'm fine with that reasoning. I will have to look up Topomax I have oxycodone but don't really isn't doesn't do anything for the nerve pain.

        PS great profile picture, take care
        Try the Lyrica. It helps me a lot. I take the max dose with no serious side effects. I also take extended and quick release Tramadol and my doc just added cymbalta.
        2012 SCINetUSA Clinical Trial Support Squad Member
        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

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          #19
          smashms, I hope you find something to give you some relief soon I tried gabapentin for a while 2700 mg along with oxycodone but didn't get any relief. Strangely enough The gabapentin did help with the spasticity in my feet at night.

          Previously I think I posted my pain Dr. Gave me methadone when actually he said he didn't want to because it's so easy to overdose on anyone hear anything about that?

          I've been taking this lyrica since Wednesday 75mg a day and it's helped some with the burning in my stomach. Now if I could find something to relieve the pain in my back and left hip I might be in business. .

          I'm going to ask for a script to see a seating specialist and look into getting a different cushion. One out so much dump I'm currently sitting on a ride designs which I love for the stability but it kills my hips and back.
          At least that's where I'm pointing some of the blame.
          Anyone have any suggestions? I used a Jay2 for the first 24 years of my SCI jet setting life. .

          SteveP I was taking the D-mannose as well and still getting Uti's so we're trying an antibiotic for a while thanks everyone for all the info. .
          Courage is being scared to death but saddling up anyway. .(John Wayne)

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            #20
            Originally posted by Cowboys_Place View Post
            smashms, I hope you find something to give you some relief soon I tried gabapentin for a while 2700 mg along with oxycodone but didn't get any relief. Strangely enough The gabapentin did help with the spasticity in my feet at night.

            Previously I think I posted my pain Dr. Gave me methadone when actually he said he didn't want to because it's so easy to overdose on anyone hear anything about that?

            I've been taking this lyrica since Wednesday 75mg a day and it's helped some with the burning in my stomach. Now if I could find something to relieve the pain in my back and left hip I might be in business. .

            I'm going to ask for a script to see a seating specialist and look into getting a different cushion. One out so much dump I'm currently sitting on a ride designs which I love for the stability but it kills my hips and back.
            At least that's where I'm pointing some of the blame.
            Anyone have any suggestions? I used a Jay2 for the first 24 years of my SCI jet setting life. .

            SteveP I was taking the D-mannose as well and still getting Uti's so we're trying an antibiotic for a while thanks everyone for all the info. .
            Cowboy I have been taking Methadone for 7 or 8 years and have no problem with it at all. My doctor thinks it is very safe. I started off using 5mg pills and I get relief with it. If it forget to take it for some reason I dont have withdraws or any thing, I just end up in a ton of pain and then I say to my self "did I take my pills" and I look and sure enough I forgot so I take them and in about 30 min I feel better depending on how long it has been and what the weather is doing.

            I have found something that has been helping a little. I have had a friend who does massage and does the taping with tape on the skin (KT Tape). when watching the Olympics you saw a lot of athletes with tape on their body. Well she has been doing it on me and it has relieved some of the pain in my neck and my back. not so much the nerve pain or the phantom pain (referred pain). The product is called KT Tape here is a link to Youtube. I thought at first it was not going to work but it has really helped with some of my pain.

            Has anyone tried the KT Tape?

            Stevie P

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              #21
              Has anyone tried going to a chiropractor to see if back adjustments will help ease their pain?
              I know we are all grasping at straws hoping one will have the magic formula. For just a general question taking into account the amount of pain you're in how much would need to subside for you to say I could live with this. .

              Currently as I mentioned the lyrica has eased the burning in my stomach could I live with this amount of pain the rest of my days.. Questionable!
              I've also gone through the scenario of if they told me they could fix one or two of the pains I'm currently suffering through which would they be the back, stomach or hip. . That decision changes from day to day hour to hour right now it would be in my hip. . :-)

              I'm really hoping a new cushion will help even just a little and maybe some Dr. From the UC Davis medical clinic will have even more answers. . If they will accept me :-)

              StevieP thanks for the heads up about the tape might have to try that one of these days. . Hope everyone had at least A somewhat decent weekend. .

              Take care, Chris
              Courage is being scared to death but saddling up anyway. .(John Wayne)

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                #22
                I went and will never again. Neck in a brace for two weeks. Very dangerous. Scared the fuck out of me when he did that quick neck turn thing and twisted my body to pop my back. I was thinking, did I explain my history well enough? Ask your Doc aabout Nucynta. The stronger kind, it has helped a bit with pain. I have heard that deep massage can be helpful if one can afford a really good masseuse.
                Last edited by xtravla; 8 Jan 2013, 10:59 AM.

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                  #23
                  It's just trial and error for us all. Nucynta did nothing for me, Opana, topamax, cymbalta, lyrica, and some others I don't remember either did nothing or had side affects. I have'nt tried methadone yet, it's about all that is left for me when the ms morphine stops working. I use percacet for the break through and metholcarbamal for the muscle spasms.

                  Finding the right cocktail for yourself is the hard part. The thought of getting my neck cracked, scares the bageebies out of me!

                  One thing I have found is the pain medications do not do anything for my arthritis and I have to take something like Aleve to help with that. I try not to do that too often since I take so many meds now, but sometimes it helps out.

                  It stinks how hard it is to get a hold of your doctor.

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                    #24
                    I'm convinced some of my pain is from a pinched sciatic nerve but convincing my doctor of that is going to be a battle then maybe I'm hoping for an easy fix.

                    How many of us get driven over the edge because of non stop pain!!
                    Courage is being scared to death but saddling up anyway. .(John Wayne)

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