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Thread: I'm tired of this #$%&-ing pain!!!!

  1. #901
    That's what I like about this site, and this thread.....everyone understands me and what I'm griping about.

    I know how you feel, losing so much sleep, and that causes stress, and that causes loss of sleep, and on and on..... I've had to get use to getting rest whenever I can. After my last back surgery, I could'nt even manage to sleep in bed anymore. Laying down in bed caused my tail bone and back so much pain....I could'nt take it. I ended up in my office chair more and more, until I no longer even tried going to bed. I ended up with a pressure sore that a roho cushion got rid of, but my legs started swelling causing a set of different problems! The less time I could spend in bed, the more swelling I got!

    Finally I took the advice of my doctors and got a recliner. It solved the swelling problems, but I now have the pressure sore back, and am having tail bone issues! I've tried the roho, pillow, memory pillow, and nothing works! Now they are suggesting using a gel cushion. They are priced from about 30 dollars to 400 dollars and I have no clue what to buy. So, in the meantime, I'm keeping my legs up less and dealing with a sore toosh! Which is also killing my sleeping time again!
    Yes, TM Girl, I'm sure glad we can come here to vent! You might try a fleece blanket when it's cold. I can't take all the weight of regular bedding. It might help you some.....and no, you won't be able to keep up with everyone on a daily basis. But, you will be able to get your mind back from the "pixies", just as soon as you figure out how to get some rest. Rest when you can, learn to take naps when you can, and I personally hated that sister in law made me do it, and it works, and don't stress yourself out for not being able to sleep at night! I don't know why, but the pain is always worse at night!

    Sleep at night when you can, use other methods when you can't.......

    I'm glad I can come here, especially at night.....

  2. #902
    Smokymtnmemories I will give the fleece blanket a go, thanks for the tip.

    Here is the real irony about my lack of sleep at night; I have dreadful fatigue as one of my ongoing symptoms, in early days it was like narcolepsy! So often I fight to be awake and be a proper companion during the day for my partner, MAD isn’t it?!

    I have a lazyboy so sleeping in daytime is easy peasy. I am in this lunacy of trying to tire myself out in the day (and not give in to the overwhelming fatigue) so I will sleep at night, but just end up a sleep deprived nutcase the whole time. Everything seems worse in winter so roll on summer when I seem to have a better equilibrium. Only people with our type of pain would understand the madness of not having normal sleep patterns when the difference between day and night is only meaningful cos its dark at night and most people are in bed!
    Take care all.

  3. #903
    Fuck SCI, Fuck unrelenting neuro pain.
    Awoke at 3am with electric shocks in my heel that hit every 50 seconds and last about 7 seconds - the kind that take your breath away. Lasted 48 hours and mysteriously receded. I have no clue what was the cause. Weather?, UTI?, Overdoing it? Underdoing it? No idea... very humbling.

  4. #904
    holy fuckity fuck fuck fuck i'm havinng a bad couple days AAARRGGHHHHHHHH

    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

  5. #905
    Senior Member Cowboys_Place's Avatar
    Join Date
    Dec 2005
    Northern California
    I hate this F*%K@ng pain it NEVER stops and it has me thinking very bad thoughts. Does anyone believe there is something in the works that might help us with nuero pain?
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  6. #906
    Senior Member
    Join Date
    Jun 2008
    I wish there was something out there "in the works" that would help with chronic neurogenic pain. If there is, I don't know about it. Has anyone else?
    C4/5 incomplete, 17 years since injury

    "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

    "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust

  7. #907
    Senior Member JEAPOW's Avatar
    Join Date
    Jan 2011
    I have only been on pain meds for two years since I got hurt so I can't pretend and say I understand, but I doubt they will ever find a cure, because it is so different with each individual. I am on Lyrica now, but honestly I don't think it really helps I can not take it 3x a day or I would be a zombie. I also am on some other meds, but nothing kills the pain. I had big hopes in the beginning one of my PT's told me it would get worse and she got in trouble for telling me that, little did I know it was really true.

    My pain mngt DR said she would give the the spinal stimulator to me, but said it is only 50% aprroval rate so for now I am going to obt out of another surgery.

    Hope I am wrong about a real cure.
    JeAnNE L1Burst Fracture inc. 11/5/10

    Live Well--Laugh often

  8. #908
    Senior Member Cowboys_Place's Avatar
    Join Date
    Dec 2005
    Northern California
    My pain Dr wants me to try the nuerostimulator, he tells me it can be tried on a 7 day trial to see if it helps. So I think I'm going to try it nothing else seems to work. I'm on Lyrica 300mg a day but it doesn't do much if any thing.
    I know I'm depressed and can't stand the burning pain in my stomach, back and hip.

    In fact it's so bad if I don't get some relief I don't know if I'll make it through 2013!! Life isn't worth living with 24/7 pain IMO I do pray that something will help us..
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  9. #909
    Senior Member alan's Avatar
    Join Date
    Jul 2001
    Baltimore, MD
    I am continuing to have increasing pain intensity, faster in my right side than left. Besides the burning, hardness, and other sensations, it feels like all the bones in my back are sticking through my skin, and rip through skin when I move. Shoulder blades rub other bones. Pain is spreading up toward my neck, as sensation goes. Arms get weaker, and harder to use. I'm worse by the day. Scoliosis keeps worsening. I rarely go anywhere, because riding over bumps makes pain worse.

    Baltimore has loads of murderers, but none taking me.

    Proofread carefully to see if you any words out.

  10. #910
    i smoke pot. that is the only thing that helps me. no it is not legal in my state, but luckily i have a brother in
    i tried so many different kinds of pain meds for my legs. i've seen all kinds of specialists. nothing has helped. one doctor i went to said that i shouldn't even be able to function or lift my head with the amount of meds i was taking for pain, and they still didn't help. if i smoke pot before i got to bed, i can sleep without pain. every once in a while i'll wake up in the middle of the night and it will hurt bad enough i have to smoke more....but that usually only happens when i have a UTI.
    lucky for me, when i crushed my spinal cord, pieces splintered off....and some of the splinters were in dangerous spots, so they decided to leave them in rather than try to remove them. i'm a low break...t12-l1. but pot is the only thing that has helped. its so frustrating having pain all the time. if we can't feel out legs, why in the hell can we feel the pain?

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