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Needing the opinion of LT SCI Individuals, Dr. Young or SCI Nurses

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    I have little to offer 6+years in. I've tried every drug therapy, stims, injections.

    I cold turkeyed from all my narcs/antidepressants in april or so. I lost the seperation from the pain that narcotics give but the relief was minimal and the mental effects severe.

    I remain in constant pain but am at least "present" in my own life. My left arm and head are unaffected but all else is.

    I'm generally less suicidal although the post the other day may not show it. No close calls since I stopped the drugs with more than a few starts prior. Dark angels follow me though.

    I try to live the best I can and someday will likely opt out as I seem to be deteriorating with less and less "good" days. I have a "dead list" of things to do that I am mostly through but begrudgingly add things and events because of family, it helps, I see things accomplished, I see a path to the end, and I recognize events/things worth working through the pain to accomplish.

    The drugs have wreaked havoc on my liver which is now ailing that my age and with a few other medical complications I know that my run here is likely shorter anyway I seem to manage a bit better, if that makes any sense.

    Were there a protocol that worked I'd be on it like white on rice, but to date nothing has helped.

    I think for me just accepting the reality of CP as a part of my life has helped a bit as I no longer ride the roller coaster of hope and the ensuing crash of another failed protocol.

    I can occasionally find solace in the 23rd 38th and 121st Psalm and I meditate on them.

    Bit more of a ramble than anticipated.

    All that I am is all gone

    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


      You're right about accepting the reality of CP, Bill. Every time I tried another new drug, I had high hopes for the results and would suffer a crash when they did'nt work that was as bad as dealing with the pain. I finally figured out, or accepted the fact, that no drug is going to "cure" it. I'm just grateful I did'nt give up and at least found one that improved quality of life. By no means is it perfect, and I have more bad days than I care to count, but it is better and I try to focus on the good days.

      I pray that some day they come up with something for cp that really helps those suffering.


        I followed the lure of a cure for 3 or 4 years. I worked with Dr. Christine Sang at MGH, now at Women's and Brigham doing pain studies, tried botox injections, acupuncture, 4 or 5 types of massage. In all of that time I *did* find one thing that really worked; phenobarbital given intravenously. Too bad it's not practical. Eight years ago, I realized that I was spending my life obsessing about pain and stopped looking for total relief. I now take only 50 mg of tramadol every 8 hours, which keeps the pain somewhat muted. I stay busy and don't let the pain keep my attention, because when I think about it, it's really bad. Just writing this has about tripled my awareness of how bad it is, so I'm going to go and do some exercises and get ready for bed. Pain will never be our friend, but for many of us it is our constant companion and it behooves us to try to understand it and learn to coexist. Be aware that it won't come easy or quickly.

        Don - Grad Student Emeritus
        T3 ASIA A 27 years post injury


          Donno - may I ask what kind of pain you are treating? Is it burning? Did you have a spinal cord injury at what level - complete or incomplete? I couldn't tell from your public profile.... How long have you been stable on Tramadol at 50mg every 8 hours?

          Are you able to carry on with life without the pain effecting you much if you stay busy?

          You must have had very sophisticated care at MGH, what a great hospital.