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Thread: Neuro pain-what works!?

  1. #1

    Neuro pain-what works!?

    Can anyone tell me what works? I take 150 mg Lyrica 3 X a day. When I increased from 100mg 3X a day it was a huge improvment, but seems to be getting worse again. I also take 1 mg of Ativan when it is unbearable.
    My injury was in Oct 2008. I am C3 complete. I get so cold. Having something hot to drink helps. Sometimes I feel like I am sitting on an extra pair of legs. The worst part is how cold my hands feel. I sometimes wake up at night feeling like something is holding me down.
    Does anyone have this happen?
    My wife is typing for me.

  2. #2
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    Hi Dave T, there are quite a few pain experts here on CC so I am sure you will get lots of good ideas. I take 200 mg of Lyrica 3x plus a take Ultram/tramodol. It doesn't go away but this makes it more tolerable. The cold weather and weather changes make mine worse. I hope you get the info you seek and mostly I hope the pain gets better.

  3. #3
    The only thing that works for me is methadone. I know its an opiate, but it does a great job on my neuro pain.

  4. #4
    DaveT - one option would be to go up to 600mg of Lyrica a day from your current dose of 450 mg/ day.

    Another thing that has helped some people is to take a tricyclic antidepressant like amitriptlyine or nortriptlyine starting at 25 mg at bedtime. That is the combination that I personally take (lyrica and amitriptyline).

    Then some people will add a 3rd drug that is an SSRI. I think Cymbalta is one.

    Then you could try opiates for the really bad times - it helps some people but not all people. But I would try it before concluding that opiates don't help central neuropathic pain. If you find they help, you could consider taking a long acting opiate, like tomw does above with methadone.
    Actually, all these drugs have to be tried to see if they will help you. None of them help everyone unfortunately. And you constantly have to weigh the side effects.
    Ativan isn't a bad choice to take when it gets crazy bad. A number of people here find that a barbiturate is the only thing that gets them through. You are only 1.5 years out from injury. It takes a while to find what works. Do you have a pain specialist to work with or a SCI physiatrist to help you?

  5. #5
    I take Cymbalta also. That helped my mood and seemed like helped with the pain. I was back to Craig for a re eval in Nov 09 and talked to the doc about it then. They said this was the best plan for me now. I have neck and shoulder pain and take Percocet sometimes for that. I know that won't help the neuro pain though. Before my injury I had rotator (sp) cuff surgery on both shoulders so had bothered me before. I had a strong pain threshhold before this neuro pain.
    SWH2007, my wife found another thread you started about this subject with some links.
    It helps to know I am not the only one with this.

  6. #6
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    Other Thread

    Quote Originally Posted by DaveT View Post
    I take Cymbalta also. That helped my mood and seemed like helped with the pain. I was back to Craig for a re eval in Nov 09 and talked to the doc about it then. They said this was the best plan for me now. I have neck and shoulder pain and take Percocet sometimes for that. I know that won't help the neuro pain though. Before my injury I had rotator (sp) cuff surgery on both shoulders so had bothered me before. I had a strong pain threshhold before this neuro pain.
    SWH2007, my wife found another thread you started about this subject with some links.
    It helps to know I am not the only one with this.
    d info

    I think that thread has some good info from Arndog and others and a really good explanation of this kind of pain by dejerine. I should have thought to refer you to it.

  7. #7
    Does it seem for people with neuro pain that it gets worse as time goes by?
    Does anyone else feel like they are sitting on their legs etc?

  8. #8
    yes, it does seem to get worse overtime. i take kolonipin at bed time that seems to help. also take cymbalta 60mg is all the more you should use cause after that it just doesn't seem to help. best thing to do though, keep the mind busy. constant music or tv helps. and dont try to push away the pain... that only makes it worse, accept that its there and instantly go for a roll or something... this helps me at least...
    I am just a man with a heart and sinful hands.

  9. #9
    Hi DaveT and Mrs T.,

    I feel the same way as you, Dave. It helps me to know that I am not alone, although I wouldn't wish neuro pain on anyone. That is one of the biggest ways this site has helped me; others who can relate.

    Your injury is about 4 months older than mine; my neuro pain has increased over this past year. I was at my Pain Specialist/Neurologist today and received another change of meds to try. From what I have been able to learn so far, it seems that pain management comes as a result of lots of trial and error.

    I don't have much by way of advice on the matter. I can only offer that I understand about the freezing pain and other rather bizarre pain/feelings. I also sometimes have sensations that my limb is being pulled/twisted and it's just there not moving at all. Or that it might explode from pressure building inside/out, among others...

    I hope you find some relief.
    Last edited by Still Learning; 02-22-2010 at 09:09 PM.
    The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

  10. #10
    Thanks Still Learning and everyone else!

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