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

  1. #1

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

    My pain levels are getting to be so high that I've come to the point I'd rather just not be in this old world any longer. And, that's NOT me!!! I love life and want more then anything to be able to enjoy it again, but this pain is getting to be so nerve racking that I've ran out of coping mechanisms. I exercise at least 90 minutes per day (treadmill, stationary bike, weight machine and pool exercises) eat a clean diet, do my own house work, grocery shopping, etc., try to get out at least 30-60 mins in the sun, weather permitting and finally, I do about 5 hours per day @ my laptop working my job as registered nurse, conducting chart audits. Prior to my injury, I worked a neuro unit, but dealt mainly with patients who were fresh injuries, still in spinal shock, or post-opt. Long term neuropathic pain was not something we dealt with. I'm now almost two years out and have no upward titrations in my pain meds. My pain mgmt doc feels what I'm on should suffice. After my accident, I had to move from VA back to WV, so there are no docs in my area who have much experience in the actual care of a SCI patient. He says he'll consider a spine stimulator, but does not want to increase my medication levels. The only antidepressant he would rx was Elavil, which kept me vomiting for eight days till I dc'd it. Currently, I take 300 mg of gabapentin, three times a day; 10 mg of baclofen, three times a day; Oxycontin 10 mg, every 12 hrs and Tramadol 50 mg, one per day, for break-thru pain. My question to those who are longer term then I...does this seem like a reasonable amount of medication at the two year mark? My search of the archives would seems to say to say no, but many of your are much further out then I. Thanks in advance for your input.
    Last edited by Patty41; 10-09-2010 at 07:28 AM.

  2. #2
    Moderator jody's Avatar
    Join Date
    Jan 2004
    east o the southern warren
    I have not lived in the south very long. It took me months to find a doctor too because none wanted and sci patient on pain meds. I finally did find and resident intern who was willing to learn more about sci. cool lady. Im sorry you are feeling so bad these days. sometimes it takes a lot of tries to find something that works.

  3. #3
    when i was taking that much gabapentin i literally felt like my bones were disenegrating and my muscles were calsifying(sp). the pain was horrid. i finally ran out and the pain completely went away after about 18 hours. now dont just go off it as im sure you know the consequences.

    i don't know much about oxy but my pain doc says most of the narcotics intended for acute pain like hydrocodone will create more pain in chronic sufferers. im on tramadol now and that seems to work.

    the only thing i'd say about the rest is you might be exercising too much and if your sitting 5 hours straight doing computer work that will in my opinion create horrible pain in the shoulders, traps, lats, rhomboids, neck etc...take some more breaks. rest works wonders but DO DO DO keep up the exercise, clean food and "living". with food if they are too high in omega 6's that can cause inflammation. as far as nutrition keeping my protein intake up and supplementing L-arginine helps me alot. also i've noticed for me drinking muscle milk with whole milk knocks a good 15% of the pain down alone.

    this is all me and im no doctor...want to be but im not. i've just gotten frustrated with no one having any answers and saying "tough luck it's your life now deal with it." so i look at everything i can find. here, other websites and gnc. i research and then i guinee pig myself. i then pay attention and take note.

    good luck. i hope you find a solution cause life really is worth living. i don't say that flippantly, i do know pain very well!!
    "Impossible is Nothing" - Adidas Slogan

  4. #4
    Senior Member
    Join Date
    Aug 2007
    last house on the left
    I can't speak to much of what you question, but I can say that 50 mg of Tramadol wouldn't be sufficient for me. I routinely take 100 mg of Tramadol on top of my other pain meds for breakthrough pain.

  5. #5
    I've never heard of gabapentin causing more pain. I think that's perhaps a coincidence or maybe true, but extremely uncommon and shouldn't be expected!

    Lyrica works better than gabapentin for some. It did for me, although a pain specialist helped me cut down slowly on it as I slowly increased the lyrica.

    I have less pain usually right after I exercise hard, but usually have more pain that night. Have you tried taking a day break from exercise and maybe just do some mild stretching and lay down with your feet up or the static back position (which is lying on your back with your legs propped up high so your thighs are at a 90deg angle to your back- like you're sitting in a hard chair, but lying on your back.) Your body may need some breaks between exercise days... just a thought...

  6. #6
    I agree with James Smith, Eileen, and Darlagee's advice.
    I would also throw out there that you are taking 900mg of neurontin daily which is well below the therapeutic ceiling of something like 2400 mg. So that might be something you could do to get more relief if Neurontin works and you tolerate it. Or try switching to Lyrica which as Darlagee says may be more effective than Neurontin in some people (me included).

  7. #7
    i got it wrong...neourontin made me fall asleep at the wheel and lyrica gave me pain. it seems whatever the unusual side effects are i get them. i have yet to meet a doctor that even slightly understands what goes on with me. anyways both things were cured by discontinuing usage(for me).
    "Impossible is Nothing" - Adidas Slogan

  8. #8
    Hi Patty, I've had neuropathic pain now for over six years, it's been considered chronic for the past four. I take 800mg of gabapentin four times a day, mst morphine 30mg three times a day, hydrocodone 350mg twice a day for break thru pain and 750mg metholcarbamol three times a day for muscle spasms. I've tried more medication than I care to remember. Including patches for pain, cymbalta, lyrica, and the list goes on... By no means have you reached the end of your search for the right med and the right dosage. I finally ended up at a pain clinic. It's the only way in my state to receive what you need to fight the pain. The laws are so strict, most doctors don't want the exposure, so you're always under medicated. I won't say they have completely gotten rid of the pain, but at least I can function and get some sleep now. If possible find a good pain clinic and work with them to get it under control. I wish you much luck...

  9. #9
    Thanks everyone for your posts and emails. Lots of good perspective and things to consider in regard to making some positive changes.

  10. #10

    Very sorry to hear of what has happened to you and that is not an idle comment. I have never met anyone with severe central pain who did not have moments of wondering what life could possibly offer. There is sometimes the feeling of "Well, this adventure is over with, and I lost, so let's get onto the next one".

    The thing is, that while you live with this feeling, you must admit that you have in fact been learning something. I don't know what it is, but it has to do with compassion for others, even as you wonder why people complain about little problems, and seem to be big babies. This feeling somehow penetrates into your own skull from time to time sufficiently to help you remember at the very worst times that there will be better times.

    There will be that exceptional day when you saw something good happening in the lives of children, or when the fall colors came alive, or when you managed to make a trip to the beach. Then, the savor of life comes back, and you realize, it was for the best, that you were making progress as an individual, even though you felt awful, were misunderstood, were lost in the shuffle of humanity, and were absolutely unable to figure out what was going on in life.

    There are many here going on three decades of central pain, and on balance, the really rotten years, were nevertheless able to do something that makes you glad you didn't miss certain things even if you have no conscious reason to look forward to tomorrow.

    The really ugly night is more often than not followed by some sort of enlightenment or even joy when the sun comes out and the impossible night fades into the past. The better time usually comes after you managed to get beyond some problem, followed by an unexpected time when you managed to get some rest, despite the burning of the sheets on your skin.

    Do I sound morbid? I am one who has to kind of get upset to find my motivation. Others do it differently. I am not a "beautiful thought" type of person. I am a "life wasn't supposed to beat me" type of person, so I do not let it win. If all else fails, I can think of Alan and how tough he is.
    Last edited by dejerine; 10-13-2010 at 01:47 PM.

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