Feeling more nerve pain??

    • Anonymous
      October 3, 2006 at 9:13 pm

      Hello friends,

      I’m post 4.5 years and in the past year have experienced more nerve pain!!. I believe that I’m still improving in many ways. I can walk farther, have better balance, my bowels and bladder are a bit better and my fatigue seems to be getting better. I’m feeling that my frozen body from the chest down is thawing out a bit. But, I’m also experiencing much more nerve pain. Intense pain in my feet and legs. Very much like the feeling you get when you hit your crazy bone.

      Is it possible that as the body repairs itself that one can feel more pain??? Anyone else??? When I was in a wheelchair for the first year I had very little pain, as I’ll getting better the pain is coming????

      I’ve tried Nuerontin which helps with the pain but I refuse to take it because of the side effects. Almost total incontinence, much worse constipation and the real reason is that it numb my already numb genitals making an orgasm impossible. I’ve tried lyrica but it doesn’t work for me. I’m on 30mg of baclofen 3xday which helps with spasms and nerve pain but have been told that I can’t increase that dose.

      Is there a pill that anyone knows that I could take once in a while to have a few pain free hours???? Maybe morphine or another narcotic???

      Thanks for your reply,

      Rob

    • Anonymous
      October 3, 2006 at 9:43 pm

      Rob,

      I take Dilaudid 2mg whenever the pain from my GBS residuals gets especially bad. This can be addicting fairly quickly, if taken every day, so I don’t suggest it for constant use.

      I”m not on any other pain relievers except Effexor, which does seem to help control the day to day pain. I found out it was helping me, ironically, by stopping the pills – boy could I tell a difference.

      Best wishes for finding a good solution.

      Suzanne

    • Anonymous
      October 3, 2006 at 9:58 pm

      Rob,

      Apparently, like Effexor, Cymbalta is used for pain, even though it is a depression med. I am on a low dose of Cymbalta, and it definitely helps for my body pain, but not the ‘heavy’ pain in hands and feet, possibly because I am on a very low dose, and maybe because It isnt soley a pain med. Not sure how it will effect bad pain like yours though, may be worth it to find out.

    • Anonymous
      October 3, 2006 at 10:03 pm

      By the way Rob, are you going to the Symposium in Pheonix? There is a session on pain management on Friday 3rd November from 2 – 3 pm. If you dont attend the whole symposium, you only have to pay $50 for the day.

    • Anonymous
      October 4, 2006 at 9:45 am

      [quote=rshaw]Hello friends,

      Is it possible that as the body repairs itself that one can feel more pain??? Anyone else??? When I was in a wheelchair for the first year I had very little pain, as I’ll getting better the pain is coming????

      [/quote]

      Rob,

      This has definately been the case for me. I am almost one-year post-GBS onset and I started to get some feeling back in my feet about one month ago — at the same time, my pain level in my feet increased substantially. This also happened to my arms and parts of my hands as they were healing and they now have increased feeling. This last few weeks I have noticed increased pain in my back, shoulder, neck and face (all places that were damaged early on when GBS first occurred). I am hopeful that this means the damage is beginning to heal. We shall see.

      As far as meds to control the pain, I take Lyrica which is the only thing I do not have an allergic reaction to. There are many alternatives for medications and you just have to find the right one and the right dosage for you. Good Luck…

    • Anonymous
      October 5, 2006 at 1:28 pm

      rob,

      you can also try elavil, topamax, lamictal, trileptal, keppra. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 7, 2006 at 2:22 pm

      Thanks to all for your great replies and concern.
      This site is awesome!!

      Take the rest of the day off,

      Rob