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

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    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 one.....my 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.....

    Comment


      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.

      Comment


        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.

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          holy fuckity fuck fuck fuck i'm havinng a bad couple days AAARRGGHHHHHHHH
          Kindly,

          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

          Comment


            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)

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              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

              Comment


                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

                Comment


                  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)

                  Comment


                    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.
                    Alan

                    Proofread carefully to see if you any words out.

                    Comment


                      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 college...lol.
                      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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                        I was at the end of my rope in dealing with pain. My bedside table was filled with prescription bottles of Norco, sleeping pills, spasm pills and i hated that I had to take them. However, I also rationalized that the effect of the pain on my body was more devastating than not treating it with medication.

                        Never in my wildest dreams would I have ever imagined that I would become an advocate of medical cannabis. It is legal where I live and the doctor gave me a prescription. However, there is still a stigma attached to it and If I hadn't experience the positive effect it had on me, I might be judgmental too.

                        But, I gave it a try and was so impressed with the results. The doctor set me up with this very cool vaporizer pen that all I had to do was press a button and it would heat up the dry herbs to vaporize. Being a quad where lighting a match or lighter would have been difficult.

                        The doctor also introduced me to the different strains that would be most helpful. Sativia Is the social strain that allows you to function in the day and maybe even bring out some creativity in you. Indica is the one that helps the most with pain, but I only dare to have a puff of this after I'm in my bed because I'm not quite sure if I can handle it while I'm sitting in my chair.

                        Unfortunately, my vaporizer Cartridge broke so I haven't had my cannabis for the last two weeks. I definitely noticed the difference. I am in so much pain. I've started taking Norco again and losing sleep.

                        I am still naïve so I don't really know what Paraphernalia would be the most effective and easiest to use with my limited hand function. The cartridge I need to repair my vaporizer pen is 50 bucks. So I've been doing without. But I think to get back to the road of health, I need to make the investment. If anybody has advice on equipment to use, I would really appreciate it.

                        For the last three months, since I started to take one puff from my vaporizer, I quit taking all of the other prescription drugs. So how can vaporizing a flower not be better than taking 4-6 pills just to be able to get rid of the pain and fall asleep?

                        Comment


                          Holy crap, nerves are roiling, pain is growing like a wind driven firestorm in a parched forest.
                          Last edited by bollefen; 17 Feb 2013, 1:51 PM. Reason: can't type worth a shit anymore
                          Kindly,

                          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

                          Comment


                            sorry to hear it bud, wishing you the best..
                            T11 Asia A after near-fatal bike crash.. Just happy to still be here

                            No, I didn't loose my mind... It got scared and ran away!!

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                              bollefen, sorry about the neurological fire storm. How can we get the attention of whoever controls the purse strings to put more money toward spinal cord nerve pain.
                              Courage is being scared to death but saddling up anyway. .(John Wayne)

                              Comment


                                Fuck my life.
                                Read my post in life a pisser, still in misery.

                                ket
                                Kindly,

                                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

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