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  1. #1

    Central Pain Solutions

    I am almost 1 year post and started getting central pain about 3-4 months post injury. But then it got worse. I've had lots of infections (UTI, C. Diff, Cellultis) which contributed/made it worse, but now I'm supposedly fine but I'm still having horrendous central pain -everywhere- below my T3 Injury level, but especially bad right around the break and in my legs and feet.

    I have tried the following:

    Lyrica 600mg/day
    Neurontin 3600mg/day
    Amitriptyline up to 100mg @ bedtime
    Cymbalta 120mg/day
    Effexor 150mg/day
    Trileptal - can't remember dosage but it was in the analgesic range
    Topamax - 100mg/day
    Opana IR - 30mg
    Oxycodone - 50 mg
    Ketamine Infusions
    Tramadol - up to 200mg

    I am desperate to find some relief. Methadone has been recommended by a few but I'm scared of the side effects. My last pain clinic wouldn't even prescribe Methadone anymore because he said he didn't want to ruin his safety profile.

    What else can I try? Is Methadone the next choice? I really do not want a pump.. Don't want surgery or anything implanted in me unless absolutely necessary.

    Is it odd that my pain is all over? From what I read most people have it in 1 or 2 areas (i.e. butt, feet)

    I have burning and shocks in my feet/toes. Occasionally the burning changes to cold, which in turn makes me shiver because my body thinks I'm cold.

    Any help or suggestions are greatly appreciated.

    I'm in the Atlanta, GA metro area - if anyone knows of a good pain clinic, please let me know. I don't want someone who will just arbitrarily throw pills at me. I'm trying to reduce the amount of meds I am on because most of them aren't working.

    Thanks
    Jason

  2. #2
    jbridges, your pain symptoms and distribution sound similar to mine, although I'm a T10 with at level, and below level pain. The worst area for me is my hips and upper thighs, but it does spread down to the ball of my feet when the pain is bad. My pain is controlled by my stress level etc and also the barometric pressure (i.e. rapidly decreasing pressure as with a storm front). I've tried most of the meds on your list without getting much relief. For the last few years I've just been on fentynal patches (100mg every 2 days) which doesn't treat the pain, but makes life bearable until something comes along (if it ever does). I had a trial (X2) for a spinal cord stimulator, but it didn't work for me. Perhaps this is something you could look at, there has been much discussion on this forum on the sucess or not of these for CP.

    Recently I have been taking lithuim tablets based on the success reported by some of the participants of the ChinaSCInet. You can read about these findings and the planned clinical trial on this site. I'm taking 3 X 250mg daily (lithium carbonate). I organised it through my GP, started out on 2 X 250mg and after a few weeks had a blood test to check serum levels, then up'd it to 3 X. It hasn't been the magic bullet, but it has reduced, or pretty much stooped, the bad episodes, which is a real relief for me. It's now just a relatively constant pain, but at least it's preticable and I don't have to put up with getting totally wiped out for a few hours to a day.

    I hope this provides something that can help you,
    Clayton
    "Wheelie Wanna Walk!"

  3. #3
    Quote Originally Posted by Geoman View Post
    I hope this provides something that can help you,
    Clayton
    Geoman, do you use any blood thinners?

  4. #4
    Quote Originally Posted by crabbyshark View Post
    Geoman, do you use any blood thinners?
    Crabbyshark, no I don't use any blood thinners. I had DVT's in rehab and required wolfram, but not since. Why do you ask this?

    Clayton
    "Wheelie Wanna Walk!"

  5. #5
    Quote Originally Posted by Geoman View Post
    Crabbyshark, no I don't use any blood thinners. I had DVT's in rehab and required wolfram, but not since. Why do you ask this?

    Clayton
    There's evidence that blood thinners inhibit RhoA. It'd be interesting to see if low dose aspirin and lithium worked better for your pain than lithium alone.

  6. #6
    Quote Originally Posted by crabbyshark View Post
    There's evidence that blood thinners inhibit RhoA. It'd be interesting to see if low dose aspirin and lithium worked better for your pain than lithium alone.
    Interesting. Thanks for that. Anything is worth a try...especially the way I'm feeling right now!
    Clayton
    "Wheelie Wanna Walk!"

  7. #7
    .....

  8. #8
    Jbridg- you are saying that a pain clinic isn't going to prescribe Methadone? Hard to understand that. It is a great drug that has helped so many people, I would consider it after all you have been through.

    Hey - I don't know if there is anyone in your neck of the woods with experience with chronic pain and biofeedback, but if there is, go see them. It isn't a be all end all solution, but it provided tools of understanding that no one else offered regarding this whole shitty deal. Maybe I lucked into a great clinician but see if there is someone there who does this.

  9. #9
    Quote Originally Posted by arndog View Post
    Jbridg- you are saying that a pain clinic isn't going to prescribe Methadone? Hard to understand that. It is a great drug that has helped so many people, I would consider it after all you have been through.

    Hey - I don't know if there is anyone in your neck of the woods with experience with chronic pain and biofeedback, but if there is, go see them. It isn't a be all end all solution, but it provided tools of understanding that no one else offered regarding this whole shitty deal. Maybe I lucked into a great clinician but see if there is someone there who does this.
    Yep, the pain clinic at Shepherd Center. Maybe it's just the one Doctor, but he's the "Senior" doctor. Well, he said if he DID prescribe it, he would start so slow.. like 5mg at night for a month, then 5 mg 2x/day for a month, etc..

    They do have a pain psychologist who does biofeedback and all that jazz , I've just been skeptical. So is it worth a shot?

  10. #10
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    Quote Originally Posted by jbridges9 View Post

    They do have a pain psychologist who does biofeedback and all that jazz , I've just been skeptical. So is it worth a shot?
    Yes! I was skeptical too. It can't eliminate the pain but it can help you tolerate it. I had been doing bits of Cognitive Behavioral Therapy all my life without having known it. But I went through learning CBT last September at the Pain Clinic here at Duke. It does help and helps teach you ways to deal with really high pain days. Don't go into it thinking it is going to take away your pain. It can definitely help you live with it.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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