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Thread: Central pain - hell on earth

  1. #11
    Senior Member alan's Avatar
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    I live at home, with my mother. I have no idea what will happen down the road when she's no longer here. If the pains still haven't been treated, allowing me some kind of life, maybe I'll finally find a way to off myself at that point, and have the nerve to do it. So far, I'm too chicken, and don't have a method (useless hands get in the way of that, too), and Mom likes having me around.

  2. #12
    I'm much the same Alan though T7 and am so guilty that I don'yt have the personality to be independent - i'm sure my sister can't take meon when mumgoes and it's really chhery to know that paras arms eventually fall apart along with everything else
    - have you read anything by Whiterabbite? - unbelivable & so are the rest of you

    as for me the future 'sucks' - I had it good for the first 20 years with mum and dad's support and employment and reasonable health - it's all not so slowly disappearing

  3. #13
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    Chris-TD and Alan

    I wish there was something I could help with. I just answered Alan's post about the pump. I've read some stuff on the self administered morphine pump device. Didn't I read one of your posts (Alan's) which said morphine in the I.V. helped?By now you know I'm a big Demerol fan. I'm going to try some acupuncture-I'm sure you've thought of all that including meditation. There was a long program on Marijuana on NPR tonight. It's now 15 times stronger than the stuff I was raised on in the 60's and a quad friend of mine from K.C. uses it along with oxy-c. I'm afraid he's going to overdo it sometime with a bad mix. My Dr. once had me taking clonopin, neurontin, darvocet, vioxx, fentanyl patch and xanax in various doses and intervals. I find that it helps if I can once get on top of the pain a bit and relax my nerves with xanax 100mg and meditate-just try to empty the brain and forget the pain, but like I said I don't think mine compares to yours Alan. Chris-can't you lose yourself in something that takes your mind off the sci. I learned to love the law-not the Arizona Asshole that I've seen on news specials, but at least my job gets me involved with other peoples troubles and I forget my own. Alan, do I have the right Sheriff in mind? I thought Wyoming was redneck but he makes us look like the ACLU. I'd like to see him try to figure out what type of punishment is appropriate for a dope smoking Quad or a paraplegic pothead. we're already in a prison worse than what he could dish out. All I've done is given you my thoughts, but that's about all I've got. I've had my share of pep talks too and they usually bounce off so don't consider this as a pep talk. we're all in the same boat pretty much. I feel for you if nothing else. WR

  4. #14
    Super Moderator Sue Pendleton's Avatar
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    Shoulders don't have to wear out, Chris. Many people head back for a few sessions of PT to learn exercises to keep the muscles strong without wear and tear on the joints. But everyone does age, some better than others. Take a look around at the able bodied folks in your area. Some 90 year olds do better than some in their early 70s.

    And who cares if your personality isn't exactly super hero status? Maybe you could start looking around for a person or two with different ailments to form a group home with if you fear being left when your folks go. I always figure it's best to have a couple plans of action in the wings depending on how things go. Your hitting 20 years post and that must be depressing too. Maybe time to treat yourself to something? How about planning a housewarming party? Always nice to meet new neighbors. Never know what cute thing might show up at the door--alone.

    Anyhoo....I'm being super wimp today. It'sdreary, raining and miserable here today and I see yet another doctor for the pain in my side this afternoon. Haven't been felt up by this many guys since high school..

  5. #15
    Senior Member alan's Avatar
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    Naah, morphine to this point has never helped in any form, oral or epidural. Whenever I try to reach high doses of an opiate to see if they'd provide relief, constipation winds up screwing things.

    Whiterabbit, demerol isn't a good med to use on a regular basis - it apparently has some bad metabolites. Can your doc get you IV morphine?

  6. #16
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    Demerol for Pain

    Alan,
    I've been either working or resting the last 2 days so I just now saw your question on Demerol, I an A #1 fan of Demerol and a lot of Doctors do seem to dislike it, but I'll bet my life they'd be the 1st to scream for it if it was all that helped. My 1st experience with it was when I developed a bad case of osteomyelitis. My primary care doc (now known as Defendant) let me lay in soggy blankets shivering and side aching to the point of tears until the Orthopedic Surg. ordered Demerol and within 5 minutes I was dry, watching M.A.S.H. re-runs and doing crossword puzzles, even having visitors. They fought back and forth until the ortho. and all the ward nurses ganged up. My new Dr. said ALL the opiates had drawbacks -but IF IT STOPS MISERY USE IT! I was on a steady dose of Demerol for several months before and after the hip removal and again for 6months straight for out of control spasms. For ahile I got 50 mgs an hour I.V. when they were real bad and every 3-6 hrs when they settled down. I had few side effects-if the nurse gave it too fast it would burn and sometimes cause nausea, but they'd follow up with phenegran and the nausea went away. If it shortrened my life, I don't really give a s---. at least it made me comfortable.I've said many times 1 good year would be better than 10 the way I felt and still do. I am often scoffed at by some docs for being an addict, but they are not a quad, trying to earn a living, with one missing hip, a ruptured rotator cuff and a shoulder that sounds like a car with bad brakes, metal to metal every move, and a spinal column shaped like a bad 'S' so screw the metabolites. Sorry to rave on, but the answer to your qustion is 'no' the docs who know me drag it out when they see me coming. FYI-one Dr. told me that Demerol (meperidine) was discovered by somebody in a drug infested area of the West Coast i think looking for a new high. WR

  7. #17
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    Morphine-demerol

    Alan, I never did answer the question-the doc I fired insisted on morphine, but it did nothing.WR

  8. #18
    Senior Member alan's Avatar
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    Don't argue with what works. I wonder if IV opiates would do me any good.

    100 mg Demerol IV with 50 mg Vistaril worked after my fusion, but it made me high as a kite. After a different surgery a few years later, demerol did nothing.

  9. #19
    Senior Member mike's Avatar
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    Central Nerve Pain

    Alan, I share your problem. I have been a C5 for two years and though I am able to walk and get around pretty well, the increasing central nerve pain I have been experiencing is beginning to limit my activities. Both of my legs are always burning and the problem continues to get worse. When I spoke with a neurologist up at Mayo and described the condition, his comments was that there was not much out there in the way of medication but I would be well if I could just find a way to get my mind off the pain. I personally believe that every doctor that reacts that way to Central pain should be subjected to it them self to see how easy it is to take your mind off of it.

    I presently get more information from this web site on how to deal with pain then I do from my doctors. It seems that I read more and more about how pot is an effective means of dealing with the pain. Just can't get my doctor to perscribe it.


    Originally posted by alan:

    This may belong in Life, so feel free to move it.

    21 years ago today, I heard the fateful words, "You're paralyzed, and it's hopeless." A C-5 quadriplegic. Natually, I was devastated. Little did I know that I soon would be wishing that was true.

    I always thought "paralyzed" meant you can't move or feel. A month after the injury, I started feeling - pain. All over my body, where I wasn't supposed to feel anything. The doctors said I wasn't having pain. My brain said otherwise, and has said so more loudly ever since.

    The pains kept intensifying, and further limiting what I could do. I once could push a manual chair up a hill (with hill climbers) - now, I can barely drive an electric chair. I could exercise, and take tough PT - now, I can't exercise. I could go places - every year, fewer and fewer places, and now I'm homebound. I could type long letters - now, even this is a chore. My central pain is no different than a progressive disabling condition, only I started out disabled and get more so.

    How about just a cure to allow me to be a "regular" quad, and do what other folks my level do? Is that really too much to ask? <sigh>
    mike

  10. #20
    Senior Member alan's Avatar
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    Yep - just dunk those doctors into gasoline up to nipple level, light 'em up, and tell them "get your mind off the pain - there's nothing we can do for you."

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