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Thread: sleep would be nice

  1. #1
    Senior Member alan's Avatar
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    sleep would be nice

    Damn pains either don't allow me to fall asleep, or wake me up after an hour or so. Haven't found a sleep aid that helps. Nights are long and boring.

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

  2. #2
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    Hey Alan,

    Terrific article you wrote at painonline.
    Best to you buddy. Most of us are not worthy to touch the ground you are not able to walk on.

    Everyone read "Reality CP" by Alan.

    Alan's landmark article is free, whereas I think it costs you 700 a year to read the journal where people claim we are exaggerating. Good deal, Alan!

    I wanted to leave a comment but haven't thought of the right one yet.

    [This message was edited by underdog on 10-28-03 at 06:23 AM.]

  3. #3
    Senior Member Stiggy's Avatar
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    I deal with this problem everynight alan.
    If I could take this pain from you I would Alan..God Bless

    "The Meaning of things lies not in things themselves,but in our attitude towards them"

  4. #4
    I agree it would be nice...I have an emergency appointment with my rheumatologist tomorrow...my pain has become intractable and now involving the thoracic level. I am losing sleep and along with that some patience for daily living. I have taken several narcotics and relaxants and they do not seem to have any effect on my pain...I get dopey, but I still hurt. I guess today I just got to the end of my ability to stand it. Sometimes at work it is just blinding...no more heroics....I GIVE!


    Mary

  5. #5
    Senior Member alan's Avatar
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    Underdog,

    Thanks for the flowers, but I'm no hero. Far from it. I realize full well that, even if I had spent the last 22 years feeling what I felt for the first month after my injury (nothing below the injury level), I still wouldn't be a "superquad" - that just isn't my personality. I hope I'd be as close to independent as other C-5's here, but who knows? Just as I can't say for sure what I'd be doing today if I never hit the unidentified floating object, I can't say for sure how I'd be if I was pain free.

    I hope what I wrote helps. Since things keep intensifying, I keep adding to my copy. Maybe one day, I can add a final sentence - "pain gone."

    Stiggy,

    I wouldn't give this pain to you. What bad thing did you ever do to me? What would be nice would be to project it onto doctors for a week or so at a time - might get their urgency up. Maybe onto people who are against stem cell research, too.

    Mary,

    I understand not having patience for daily living. Nightly living, too. The worse the back gets, the less typing I'm able to do, since it prevents me from using my arms (this post took me a while.) And I lay on my back (or a pillow is pushed against it if I'm on my side) at night. I'm past ready for this nonsense part of SCI to end. Being comfortable, and able to go out, would be nice. So would sitting without feeling like the leaning tower of Pisa.

    All,

    I read in the central pain mailing list that the flare in sunspots can increase central pain. Maybe that explains my and Mary's worse back pain this week.

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

    [This message was edited by alan on 10-28-03 at 10:50 PM.]

  6. #6
    Alan,

    I suppose we should feel somewhat a phenomenon, if sun flares are making us hurt worse. I for one would prefer to be distinguished in other ways. I was thinking to myself at about 4 am after the narc haze wore off, that if you were there hurting worse than me, and I hurt as bad as you, I could not get out of bed anymore, and I could not imagine how I would manage such a feeling. As it is, I am reaching across my desk to type because for some reason this is the only wacky angle I can tolerate this morning. Too many people are asking me why I just don't go get the L-3 taken care of, fused and get on with it....I sit here thinking sure, then what about the C-5 which is technically worse?? And then someone needs to explain why breathing is becoming an issue for me now...for me the issue is that it is all hell bent on disintegrating, and yes there are things that I am doing to improve my situation but still it will always hurt me and while I am often able to be playful and imaginative...even that is getting too hard for me now. I love my job, and it is harming me. Patient care on my floor is heavy and demanding, many of the patients are total care for me and while I love it, they are heavy to move around and that is not helping my situation at all.

    Well enough of my complaining, hopefully today my doctor will come up with something more useful than the current plan, hell, maybe she can just hit me with a mallet or something and it will all go away???? NO...we both know...nothing is that easy....so I have a feeling I am heading for neurontin, although as much of that as I give on my job, my patients are still hurting everyday....sigh...owwwwwww....have a good day Alan...I would take this pain twice as long if you could get a break one day. You deserve it.

    Mary

  7. #7
    Senior Member alan's Avatar
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    Mary,

    Is there any guarantee the fusion would help?

    Overall, I'm disgusted. I keep getting worse (been unable to do ADLs for years), my mother isn't getting any younger (so who takes care of me down the road? I can't, nor can I get myself out of this world. How will I take care of the house? I can't concentrate on anything for more than a couple of minutes at a time, as I'm always distracted by burning, et al. And so on. Bah.)

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

  8. #8
    I am not fusing anything...I am taking all the drugs they give me and doing more stretches. I was ordered to have an MRI of my thoracic and lumbar spine. This will be my third L-spine, and my first T- spine. I am tired from a long day and just want to swallow my medicine and go to sleep.

    Alan...I am long since past trying to encourage you by saying whatever it is I used to say. All I can say is that ....I don't know...I wish I had the answer for you, and I really care about what happens to you.

    Take care as best you are able.

    Mary

  9. #9
    Dear Alan, I am one of your admirers. My daughter read "Reality CP" also and sat there the longest time without saying anything. That article is heartrending. In fact, at my very worst times, I often say this Alan person is sitting there worse, and this helps me through it. Sorry, but thanks. You must have made a lot of docs mad when you told them the meds they thought helped, weren't working. This can really tee a pain clinic off. I think they are used to a lot of people who want opiates being grateful for the pain relief it offers, because they sure get upset when you tell them it isn't helping the CP. Why can't you just be reasonable and be like the others (who didn't actually have CP), grateful for the oxycontin. Oxycontin makes people feel powerful when they give it and as Andrew Vachss has written, even more powerful when they withold it. This failure of oxycontin in severe CP reminds me of my old math professor, sort of an egghead, who said he couldn't understand why certain higher order differential equations would not commute since it was obviously to their advantage to do so.

    As to giving docs a temporary case of CP, capsaicin just beneath the skin gives them just a touch of it, and those who try this, DO in fact start doing pain research. Dr. Coghill has cranked out a tremendous amount of stuff, getting ever better after just such an experience.

    The amazing thing about Mother Theresa is that she was able to have such great empathy without experiencing what the poor experience. Yet, even she realized she needed that tie so she voluntarily became poor. I see postings that suggest pain docs try one little wheal of subQ capsaicin to release Substance P and set off allodynia, and I must say, I think it would astound and shock some of the clinicians to be informed in this fashion concerning what they have been treating. They would immediately stop comparing us to diabetic neuropathy.

    Personally, I have just about had it with uneducated neurologists who pretend to know CP, but have never actually seen a case before me. This doesn't keep them from hinting condescendingly that I am weak however. If they only knew what it had taken just to get to the office and what a sacrifice it was to pay their bill. At that moment, I must confess I sometimes fantasize about a loaded syringe of capsaicin, and a couple of Tongans to hold the guy down. But I just listen to the patented pain admonishment speech and think how lucky we are to have the Wise Young's of this world.

  10. #10
    Senior Member alan's Avatar
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    I've pretty much given up on pain clinics - I've tried several over the years, obviously with no success (not their fault - several of the docs did want to help.) My GP is willing to let me try just about anything I suggest, so why waste Medicare's money on a specialist who won't do anything different than he does?

    That spiel at painonline is what I took to every doctor. I still update it, in case I need it down the road. As I say, it isn't fully descriptive, since I can't really describe some of these sensations adequately. Burning, throbbing, cramped, etc., are just words I can come up with.

    I agree it might get some of their butts in gear if the felt a smidgen of what we feel.

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

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