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    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
    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!"

    Comment


      #3
      .....

      Comment


        #4
        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.

        Comment


          #5
          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?

          Comment


            #6
            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

            Comment


              #7
              I'm a t7 complete , was on gabapentin and lyrica, hated the side effects and they were not effective. 6 months ago quit them completely. The only relief I get now is with marijuana using a vaporizer, instant relief, easy to regulate amount required, very little smell, no carcinagins from combustion ,very healthy way to use a natural plant, Its too bad people could not try this option with all the healthy ways there is to comsume.

              Comment


                #8
                I agree with DDaisy about the CBT and biofeedback. It clicked for me. It is a coexistence with pain that occurs. It helped teach me what aspects of the 'experience' I have some chance of control over and what I don't. It was an epiphany for me. But it doesn't lessen the pain an iota.

                I was skeptical initially as well.

                Comment


                  #9
                  I think CBT biofeedback etc are worth the effort. I also took the Jon Kabat-Zinn Mindfulness program, tried tapping, and a few other more unusual techniques. I lerned Tao/Shaolin meditatin when young and now meditate daily. The treks though the various routes brought me strongly back to nd helped me reconnect properly with my earlier Taoist meditation.

                  I'm a hardcore case with virtually no relief from any drug therapies, althugh just started Prialt.

                  I can say that on a good day the meditation works well, on the worst, I "manage" it marginally better.

                  Net if one of the alternate mindfullness techniques does not work try others. If you are hypnotizable hypnosis works for some, I struck out on that one as well.

                  Pain is a journey and there are many paths, try them all.

                  ket
                  Kindly,

                  The Ketamine Kitty

                  All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                  Next time I die make sure I'm gone,
                  don't leave 'em nothing to work on JT

                  And I ain't nothin but a dream JM

                  Comment


                    #10
                    Originally posted by willvape View Post
                    I'm a t7 complete , was on gabapentin and lyrica, hated the side effects and they were not effective. 6 months ago quit them completely. The only relief I get now is with marijuana using a vaporizer, instant relief, easy to regulate amount required, very little smell, no carcinagins from combustion ,very healthy way to use a natural plant, Its too bad people could not try this option with all the healthy ways there is to comsume.
                    I've tried this and it helps me sleep and helps with spasticity, I find it intensifies my pain especially with the last few batches I've gotten. What's your secret?

                    Comment


                      #11
                      Originally posted by jbridges9 View Post
                      I've tried this and it helps me sleep and helps with spasticity, I find it intensifies my pain especially with the last few batches I've gotten. What's your secret?
                      It intensifies mine too. We are in the minority here lol. Alcohol also intensifies my pain if I drink daily. It gets to the point that I can't stand 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

                      Comment


                        #12
                        Originally posted by jbridges9 View Post
                        I've tried this and it helps me sleep and helps with spasticity, I find it intensifies my pain especially with the last few batches I've gotten. What's your secret?
                        This has been my experience with marijuana too. It helps the structural pain but not the burning nerve pain. You know me from another site and you also know I have relentless burning pain all over from my neck down.

                        I've spoken to other people about the medical marijuana thing and they too have had similar experiences with it exaggerating nerve sensation.

                        I will say that edibles and tincture do tend to get rid of the structural pain, and help me sleep without very much burning nerve pain, but those have the effects come on slowly. Smoking it hits my system too fast and the first response is the nerves. The next day is also horrible as far as sensation goes.

                        My doctor is currently trying me on a blend of neurontin and lyrica at the moment (2 lyrica and 2 neurontin daily) and adding in some evening primrose oil (with doctor's approval)

                        I hope things went well with the pain management visit.
                        CCS/Walker C6...it's a long story

                        Comment


                          #13
                          Originally posted by jbridges9 View Post
                          I've tried this and it helps me sleep and helps with spasticity, I find it intensifies my pain especially with the last few batches I've gotten. What's your secret?
                          Hi, not sure about any secrets, nerve pain and relief seems to vary with each case, everyone is different. When I was on gabapentin and lyrica I tried for a few months to wein myself off these with no luck at first. These drugs made me tired I could fall asleep sitting in my wheelchair, which I did everyday, had no appettite, was gaining weight from the drugs.

                          I was afraid to medicate with too much weed , get stoned and have a accident doing transfers, etc. I also have 2 teenage sons in the house with whom I did not want to let them know what I was doing so I started vaporizing pot when I could, I eventually was able to use more and more without getting too stoned which allowed me to drop the other meds.

                          The vaporizer I use is digitally adjustable for temperature and I've found different temps release different cannabinoids and I found the higher temps give better pain relief for me. The nice thing about the vaporizer is you can adjust the effectiveness of the weed by temperature.

                          I am so glad I found this medication for me and the right tool to use it with. It would be nice if you could try a vaporizer with different settings to see if you could get something to work. It took me a few months to get were I'am now but it was worth it big time. Good luck.

                          Comment


                            #14
                            Originally posted by willvape View Post
                            I'm a t7 complete , was on gabapentin and lyrica, hated the side effects and they were not effective. 6 months ago quit them completely. The only relief I get now is with marijuana using a vaporizer, instant relief, easy to regulate amount required, very little smell, no carcinagins from combustion ,very healthy way to use a natural plant, Its too bad people could not try this option with all the healthy ways there is to comsume.
                            I seem to ask this a lot, what strain of cannabis works best for you?

                            Comment


                              #15
                              an observation. I sometimes fixate on things when using MJ. I started having waaaay to many occurences of this and God knows it is bad enough without fixating on it. I have dramatically reduced my usage from daily to near nil, actually on a 1 month break will retry but a bit scared to. YMMV

                              ket
                              Kindly,

                              The Ketamine Kitty

                              All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                              Next time I die make sure I'm gone,
                              don't leave 'em nothing to work on JT

                              And I ain't nothin but a dream JM

                              Comment

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