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Does Nerve Pain dimininish with time?

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    #31
    Originally posted by xmasholli
    I am one of those people who has popped in and out of these pages for the last 10 years or so. I am a c6 SCI quad who has also had debilating pain since 2 years post injury. I am sorry to say, it has not gotten any better--actually worse. I have tried everything imaginable and combinations thereof in my pump and orally. Right now I am trying "Prialt" or zinconitide. So far I have 2.3ug/day. No help yet, just a splitting headache to add to the burning pain!
    If anyone else is on Prialt, would they please send me a quick e-mail?
    Thanks, Holly
    Holly,
    Please post your results with Prialt! I remember one other person her posting and they did not have positive results. Here's a link to that thread.
    /forum/showthread.php?t=58314

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      #32
      I've had pain since a couple of weeks after I got hurt, almost 7 years ago, and it got significantly worse as time went on. I was taking all the same drugs that you are, I even tried putting Dilaudid in my baclofen pump (really bad idea, it did nothing for pain and I gained a ton of weight. I think it even made my pain worse). I also tried Prialt, which was a really bad move. That stuff made my pain worse and completely wiped out my memory for a couple of months. I'm still struggling to remember things from a few days ago, although I do notice it's getting a little better, but so much is still missing. STAY AWAY FROM PRIALT.
      Now I'm off all of my pain killers except for baclofen in the pump and the occasional Percocet for back pain (doesn't do anything for my central pain) and my pain is less than when I was on the painkillers. Maybe I'm just not as sensitive now as I was when I was on them, but I'll tell you what, it's really nice to be able to concentrate again.
      xmasholli -I tried to e-mail you about my experience with Prialt, but it says you're not accepting e-mails. Check out the link in the post above to see what I'm talking about
      C-5/6, 7-9-2000
      Scottsdale, AZ

      Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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        #33
        Getting Worse with time

        Sorry, but mine, is more frequest... more severe and even started a few new sensations. This sucks. SOme people have no pain. I would love to be just paralized. Mike
        Mike (Florida)

        Cant we get 1 do over?

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          #34
          Hey mike,be very careful in just what you wish for.i know what you mean when you say that but i just think those who are paralyzed would not agree with you.if there is one huge thing i have learned since 99 when my son went into liver failure which started this horrid domino effect of ongoing crap,no matter how really bad you think things are,trust me on this one,they can ALWAYS get much worse,honestly.please take the following in the "only because i care' way,okay?

          i know one day i told my friend that if i could live life from a wheelchair and be without all this pain and hell we go thru everyday,i would gladly give up my mobility for some level of peace from this torture.but the more i thought about this the more sick i thought it was,and really was a huge disservice to those who are living life from a chair and also having to deal with the very same hell we do too.it just sucks either way ya know?just do not ever wish for something as drastic as paralyzation mike.who knows how much worse things would be.

          i HAD to start looking at what i still have(and what i was able to actually get back and be damn thankful for it) vs what i have had to give up,and the hell that has been added to now have to deal with or i was going to end up with even worse severe depression than i already have.tho it may not actually "feel' that way,there are many people out there who have it much worse than we do,trust me.i am serious here mike,have you seen a therepist at all to help you deal with all of these feelings?i HAD to or i wouldn't even be here right now,really.things were THAT bad for me and i was having to deal with just too much and it almost broke me.my brain just shut down on me.

          seeing a really good therepist who deals with chronic pain patients really really would help you sooo much with what you are trying to manage on your own.mine litterally saved my ass.before i was just having a really nice pity party for myself and wondering why all this crap keeps happening to me and my family members and not the really nasty people who honestly deserve to live in hell,like rapists murderers and pedaphiles ya know?but i have a whole different perspective on things than i would have if this crap never happened.there IS a certain trade off here,you just need to get to that place in your head mike.you just need to vent out all this crap you are feeling or it will just continue to eat you up,and i am not kidding.this kind of situation can either make you or break you.only you really have the power over that.

          Mike,just reading your last post here honestly it just shows that you are so wrapped up in yourself right now,and you need to 'unwrap' in order to get to a much better more healthy place in your head with this.paralyzation is NOT a good trade off,and i am sure those who are would tell you that.we are all living the very same hell you are,believe me. i could go into detail here for ya if you want.it is how you choose to handle all this that will make or break you.and if you need some help in order to do that,so what.just do that.i had no choice,i had to in order to just be here for my son who needs me.believe me, he is living his own version of hell.

          please just talk to someone mike before this gets much worse and much harder for you to handle.i am speaking from the heart here mike,i am worried about you hon.you need to gain a better perspective of all you are forced to have to live with now vs before when life was not so painful and agonizing(and no ,it isn't "fair").trust me,we all go thru this to a certain degree,unfortunetly its just your turn,thats all,and you CAN get past this,really.with the right people in your life and your treatment plans it can get better and you will have a much better quality of life for your trouble.your head is just not in a really healthy place right now,that is quite obvious from your last post.just see someone Mike.it can make a huge difference in your life.i am not going to let this get me,i refuse to just 'succumb' to it.and you shouldn't either.i just decided it wasns't worth giving it that much power over me and my life anymore.no its not easy,but then nothing really worth it ever is is it?you are letting your pain control you too much and it will suck you dry if you let it.we have only a very limited supply of emotional,mental and physical energy everyday.this gets depleted too quickly with us and it will leave you 'dry" and feeling like you are.you are using up that supply being angry and resentful(it takes a TON of energy to maintain this,trust me) and will not have what you really need just to cope.this just 'is'.you need to get to a point where you are going to just decide to kick its ass,not the other way around.it can be done with the right intervention.please seek that out for yourself?take care mike,Marcia

          Comment


            #35
            I agree with Mike. Given a choice, I would much rather be confined to a wheelchair than live with the nerve pain. Mine has progressed over the years and gets unbearable at times. I can get around pretty quick in a wheelchair however.

            imnomis

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              #36
              Where are the positive replies?

              Thank you to everyone who has replied to this thread since I started it. Now I am asking where are all the people that can share their experiences where the pain has diminished with time. I know there are SCI-ed people out there with no pain. Are you all people who have had NO pain from the begininng or are some of you people who started with pain and it has diminished either due to succesful medicine therapy, accupuncture, e-stim, or just time having passed?

              Maybe I am just grasping for a rainbow. I want somebody to help me strengthen my hope that it won't always be this way. I'm tired of the pain and drugs. I am however very grateful to be alive and for all the capabilities I do have.

              Glad ya'll are out there and so willing to share.
              Grange
              L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!

              Comment


                #37
                my experience is the pain has increased. post 21 yrs.

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                  #38
                  Until a couple of weeks ago, I would have been one of those positive posts. I've started burning and tingling pretty bad lately. I havn't felt like this in a couple of years.

                  I think it has everything to do with PT for me though. I'm C6/7 inc and have been out of therapy for about 2 yrs. I started trying to work out and went back to therapy to get back to standing and taking a couple of steps again. The next thing I knew, I'm going to bed early because of the pain and lying there thinking, "This burning sucks and I havn't felt this for quite some time."

                  Arrg! burning, cold, tingling, zapping pain that is costant and unrelenting.
                  jOE
                  www.nwiscig.blogspot.com

                  Comment


                    #39
                    My pain did get worse for a long time, but then it started getting better after I got off all the stupid medications. If I didn't have a little sore right now, I think it be relatively pain-free. I hope this gives you some hope. I'd rather deal with pain than memory loss and altered function any day
                    C-5/6, 7-9-2000
                    Scottsdale, AZ

                    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

                    Comment


                      #40
                      I had no sensations that all, good or bad for about a year and a half. Then I started getting the tingling and cold sensations, some days are worse than others and some days I was not bothered at all. However over the next year and a half the nerve pain got worse until one day I started to get a little sensation in my lower body and also felt like I could make some muscles twitch. That was about two months ago. Now I feel like I can make every muscle in my body twitch but I can't move anything. I do feel like I'm starting to get my pecks back and I can flex them which I could not do before. The sensations I had in my lower body have actually died down but I still get some and it's different every day. Also for the past week I have had no nerve pain and no tingling or burning sensations which is wonderful and I hope it stays that way. The longest I had gone without nerve pain before this last week was two days.

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                        #41
                        Im a little over a year post injury as well.My nerve pain didnt start until a couple months ago.I was woundering dose alcohol work on nerve pain for anyone?Its realy not an option for me yet Im an alcholic and have been sober 8 years plus.But If my nerve pain continues I might give alcohol a try!
                        "Independent from the rest of the sheep"

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                          #42
                          Originally posted by NEWPARA
                          Im a little over a year post injury as well.My nerve pain didnt start until a couple months ago.I was woundering dose alcohol work on nerve pain for anyone?Its realy not an option for me yet Im an alcholic and have been sober 8 years plus.But If my nerve pain continues I might give alcohol a try!
                          You really don't want to go there! It sounds like you've done great for 8 years, don't blow it now.

                          Talk to your doc about options for neuropathic pain and if he seems at all clueless, get another doc! What have you tried so far? Yeah, neuro pain sucks and it's really challenging to treat, but there are *much* better options than what you're considering.

                          Comment


                            #43
                            I need some new ideas. It's getting too damn difficult to use my arms, thanks to the pain and the shoulder blade troubles. And I've been having more problems than usual with my central pain-caused stomach queasiness. I have enough trouble eating as it is. The cramped feeling everywhere isn't helped by muscle relaxants - I'm so tight, the massage therapist can't get my muscles loose.

                            Another summer almost gone, and again nothing has been done to make me feel better. Don't know what other meds to try.
                            Alan

                            Proofread carefully to see if you any words out.

                            Comment


                              #44
                              I was hoping to see that someone could tell me the nerve pain does stop. Not looking too good. My neurosurgeon suggested it would stop eventually when the healing was done. Does it ever happen??????

                              Comment


                                #45
                                i had no pain at all for the first year , just alot of twiching , T4 down and some electrical shocks in my feet. it would shock me 3or4 times the quit. 5 minutes later same thing. it still does it today , but seams to have move it the calf area to. then a year latter almost to the day i had the brian storm of getting my verts straighted T2-T7 to take the pressure of T4 , all said in done it was the right thing to do. it was bearly pushing on the cord. not even a cut in the duramatter. someday i will post the MRI pic before surgrey , i see it like , wheres the damage to the cord. well it will be 2 years since the 10 hour operation. first 2 months i was getting some pain , they would give me a Val and Ibuprofen , all was ok. one night i went out side to have a smoke and it was cold. my back lite up like a Christman tree. went inside , took 2 or 3 hours under tons of blankets to warm up and the pain to go away. slowly i started to get spasms and real bad tightness , then more , then more and more. now i hurt so bad it's crazy. i can bearly move from bed to chair or to the pooper and shower is getting dangerous. i feel like that locked up body stuff. if i don't move and rest my head with my left hand to take the pressure of the lower muscles and i am kind of better. when i turn to the left or right i get tingling though out my whole body , kind of scary. so here i am 2 years later and the pain is real bad and that tingling crap. the guys told me to keep working out and maybe some muscles will slowly comeback and ease the pain. all i know is this sh*t is getting worse buy the day , but all si-fi injuries are different. hang in there and hope for the best. i have no more tears to shed , i need a refill.
                                oh well

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