Does Nerve Pain dimininish with time?

[Grange]

I think I know the answer to this question, but would like to hear some other peoples experiences. I am a L1 complete Asia A paraplegic one year post. Lots of nerve pain. I take Methadone 30 mg/day - 75 mg Lyrica 3 times /day - xanaflex - cymbalta once per day - xanax as needed - ambian as needed.

Sometimes pain is so bad I can't do anything but lay around. Usually activity increases pain.

Please say it eventually gets less.
Optimistically yours,
Grange

[darkeyed_daisy]

No mine has actually worsened. My accident was 18 years ago and I didnt take any drugs for pain the first 15 of those years.

[rollin64]

i was pretty pain free the first 2 yrs. now i can barely function and meds are no help.....6 yrs post.

everyobodys different though.

[Tarkus]

It's different for each person but in my case I'm 2 1/2 years post and the pain has diminished.

It happened very slowly and there are still times every day that can be unbearable, but it's far better then at first when it was relentless.

Be Big,
Alan

[harpo2]

Can't say re traumatic injuries, but my understanding from many posts here and elsewhere is that it can take 4-6 months post op for NP to even out for an atraumatic injury, but that recovery can proceed for up to 24 months. But generally the trend is for recovery to be less for pain and B&B issues than it is for motor abilities. I too would be grateful if someone could correct me re the NP recovery as I am 8 months post op to correct an AVM at T8 and have more NP now than prior or just after op. I notice that extended effort increases the pain for weeks before settling.

[Tarkus]

Can't say re traumatic injuries, but my understanding from many posts here and elsewhere is that it can take 4-6 months post op for NP to even out for an atraumatic injury, but that recovery can proceed for up to 24 months. But generally the trend is for recovery to be less for pain and B&B issues than it is for motor abilities. I too would be grateful if someone could correct me re the NP recovery as I am 8 months post op to correct an AVM at T8 and have more NP now than prior or just after op. I notice that extended effort increases the pain for weeks before settling.

I don't buy into "Time Frames". Doctors like to use them but the bottom line is that they don't know.

I've seen and heard from many that would defy any time frame other then "Who Knows".

Just my .02

Be Big,
Alan

[firesmurf]

during my past years of experience,since 03,things have become progressively worse over time.there are definite chemical changes that take place within the cord itself,that from what my ns told me,go on continuously thru out at least that first year after the actual SCI.i also read this in an article as well.but my pain and the many little syndromes that have been created appear to evolve and morph and are constsantly like recreating themselves.no two days in a row are ever quite the same for me,when i go to bed at night and wake up in the morning and start to progress thru my day,something is always just a bit different than the day before.everything appears to be in flux,never static for me anyways.tho i do have some pain that basically never really changes,others are just really insane.

i really wish i had known the full scope of just what actually takes place with SCI,BEFORE i had my surgery.

harpo,i too was first Dxed with an AVM right under my c 8 nerve,and inside my cord,it was later determined to actually be a cavernoma instead,i really thought i was kind of out of the woods when this was actually found to be venous fed instead of arterial,but man was i wrong.i had to have mine removed from my cord as it was actively bleeding(more of an ooze type thing?)the bleeds inside and out were just closing off my remaining cord space.my NS told me that the next bleed would most likely paralyze me so i had a big nasty choice to make,the lessor of two evils crap?i am thinking this was also your situation as well?did your AVM actually bleed or did they cause the damage during the resection of it?either way it still sucks to live with the aftermath.have you been to the angioma alliance website at all yet?this site was like my bible while i was contemplating my surgery and when i made that decision and afterwords too.the support there was just amazing and the people all understood what i was dealing with.great place to vent too,lol.

i get the feeling,just seeing and feeling whats occured since my SCI that this is going to be this way like forever now.things changing and morphing and things just never always the same anymore as the day before.this has been my experience anyway,and i know alot of others here have this going on too.its just all part of living with SCI i guess.spinal cord injuries are definitely not for whimps.i have found out along the way that i am a much stronger person than i ever gave myself credit for.Marcia

[razzle51]

It either stays the same , gets better , or gets worse . But with the proper medication and adjustments in doses , you should be fairly comfortable. I have Chiari and Syringomyelia

[metronycguy]

It either stays the same , gets better , or gets worse . But with the proper medication and adjustments in doses , you should be fairly comfortable. I have Chiari and Syringomyelia

not all are so lucky.

[LaMemChose]

not all are so lucky.

Word.

[alan]

not all are so lucky.

Darn right. :-( And I have yet to find any med that touches the central pain.

[Jeepin]

First six months I had nothing...now it's so bad (1.5 years post) that I'm on my stomach most days.

I can usually tell what kind of a day it will be in regards to the nerve pain before I get out of bed in the morning. Activity just worsens the pain too.

Might be time to turn to alcohol or :mega:. I've tried everything else out there without luck.

[metronycguy]

Yeah I am having a hard time too now. For a while there I was doing good had the pain managed, bumped my lyrica up to 300 on Friday, pain level are still spiking. Last night was 100 mg in oxycodone. And I was still up till 4 am with the pain. I knew I was lucky there for awhile. I always knew it could get worse.

[Wheelieboy]

Mine actually diminished to the point to where it's basically non-existent and I'm at 18 months post with a mid-thoracic injury. When I left the hospital I was on 3200mg of Neurontin a day. Now, I take nothing. Don't need it. My legs are just numb, but there are no burning sensations that keep me from living life--thankfully.

[Grange]

Like I said when I started this thread... I was afraid I knew the answer to my question. I am going to remain hopeful that something will come down the pipe that will manage the nerve pain effectively.

I relate to the reply about not knowing from day to day what it will be like. I guess it forces me to live life one day at a time.

Still trying to adjust the meds to find the balance between pain and numbed into a catatonic state.

I believe in miracles.

[rollin64]

Like I said when I started this thread... I was afraid I knew the answer to my question. I am going to remain hopeful that something will come down the pipe that will manage the nerve pain effectively.

I relate to the reply about not knowing from day to day what it will be like. I guess it forces me to live life one day at a time.

Still trying to adjust the meds to find the balance between pain and numbed into a catatonic state.

I believe in miracles.

i just wish i could get numb. haven't found any med combos to do that yet. well, except vodka, lol. and then i usually just end up getting stupid since its mixed with the meds. the oxy and lyrica helped at first but now its just like i'm eatin pills, lol.

i can tell how my days gonna be when i first wake up too. here lately i wake up so sore and spazzed out in the mornings i don't even wanna get up.

sci pain sukks, maybe that miracle drug will come along soon.

[metronycguy]

my dragon comes out at night, anytime i lie down.
i can usually mange my pain levels during the day

[Weedman]

I have tried all conventional medications available from my doc and mj is the only thing that lessens the burning. i am 3 yrs post and the pain is pretty constant.

[adi chicago]

i am 5 years post and my pain increased...i might say....became ferocious ,excrutiating.i will ask my nephew to gum a piece of paper on my door[beware of adi ...he might bite]LOL.

[Leif]

Can't say re traumatic injuries, but my understanding from many posts here and elsewhere is that it can take 4-6 months post op for NP to even out for an atraumatic injury, but that recovery can proceed for up to 24 months. But generally the trend is for recovery to be less for pain and B&B issues than it is for motor abilities. I too would be grateful if someone could correct me re the NP recovery as I am 8 months post op to correct an AVM at T8 and have more NP now than prior or just after op. I notice that extended effort increases the pain for weeks before settling.
Hello harpo2. As for atraumatic I ha surgery performed on an intramedullary AVM around the levels Th4 in 2001. Pain from the right hand side nipple level down to the groin area on same side, stabile as just after the surgery, hope it will continue like that, cause now it is not bugging me down to much, some at nights and sometimes it is a little better and also a little worse at days, recon that has to do with other daily living factors (bowel etc.), meds works pretty good or I should say very good, have tried to quit a few times but had to get back on the meds (Gabapentin) after those experiments. I consider myself lucky as such, and hope it will be stabile, but have read one could get “out of span” to some medications over time thus less effect gained with subsequent more pain. Hope it will not turn out like that over time because when I have quit the meds to try to get off it the pain has been increasing enough to put the pain in the driver seat. No comparison to ones with heavy constant pain here though, but still. But again, stabile as clockwork over that time period for me. I also recon it could vary a lot from person to person, depending on the damage, where and what damaged. Wish you good luck in your recovery.

[AngelaandKC]

I guess I'm the weird case. When I left the hospital, I had nerve pain at t7 where I had smooshed a vertabra. I left using methadone and neurontin and it helped. About 2 months later, t7 went away and t10-11 started and went through the roof. I'm using neurontin 3200mg x3 and it mostly works.

Also, for those of you who are thinking about or are on 4ap, it does, at least in my case, magnify any pain you may have. If you need to know the exact mechanics, I'm sure Wise could tell you.
Best wishes.

[NorthQuad]

Throwing sand in your eyes helps the other pains go away. Throwing sand in someone elses eyes works better for me though.

[mike bauer]

Im about 4 years post.,. T-12 Started on here just after my wreck. My pain has gone from Terribly awful to Crazy Bad. I am now on 30mg OCY 2 times a day. Then, breakthrough OXYcodone 10-325 1.5 times a day. I would not want to go without it... I couldnt survive... but I dont think it does what I wish it would do... LOL. Its awful... and I cant believe that I meet (guys )and ) girls that have no pain at all? Damn How lucky is that. I am one of those that would be so happy to just be Paralized? Sick isnt it! Thanks, Mike

[amethyst]

It took me almost two years and two pain doctors - at two different pain clinics to get my pain under control, and we are still working on fine tuning it. My symptoms changed, presumably because the swelling in my spinal cord went down, and I developed the feeling of spasms in my core of flabby abs. DON'T GIVE UP PEOPLE. Nerve pain is very hard to treat, you just have to keep trying different meds and different combinations of meds. It is not a short process.

[Grange]

I'm still trying new combinations. Monday I have an appt with a physiatrist that will take over my rehab and pain management. Only one year post so I'm still a rookie. Gonna stay proactive and positive even though it's no fun. Life goes on and it ain't all bad.

[dragon512]

Hey there I am T10 complete injury. I have nerve pain around my stomach and taken gabapentin 1800 mg. It was less then that before then my doctor increase it. My injury is four going on five years. If I don't have my meds my stomach getting cramp up like you holding a rope and tide it into a not and keep on pulling it tighter and tighter. I also taking Fentanyl 50 mcg for my leg because I'm feeling electricity in my leg like I'm sitting in a electric chair with high voltag. Before my pain wasn't that strong and I feel no electricity, but I'm doing acupuncture for four going on five years now and my pain and electricity getting stronger and stronger. I have a chance to gain my feeling back thats why I'm feeling so much pain and electricity, but it still a long way to go. My doctor said my is a complete injury, but I prove them wrong so now I'm fighting to gain my feeling back. I don't know if I ever getting my feeling back, but I can't give up now. My hope is to high to give up. Let me ask your guys a question. If mine is a complete injury so that means that I can't feel cramp or electricity in my leg right? I shouldn't feel anything at all and now as time goes by with doing acupuncture. I feeling pain and electricity in my leg so that means mine is an incomplete injury right? Also when I twiste my body left to right, I can feel my leg muscle move along with me. Thats mean I still have a chance so I can't give up now. My acupuncture said I have to feel pain before I can recovery well then I feel a lot of pain right now. Do any of your guys feel the same?

[David Berg]

It took me almost two years and two pain doctors - at two different pain clinics to get my pain under control, and we are still working on fine tuning it. My symptoms changed, presumably because the swelling in my spinal cord went down, and I developed the feeling of spasms in my core of flabby abs. DON'T GIVE UP PEOPLE. Nerve pain is very hard to treat, you just have to keep trying different meds and different combinations of meds. It is not a short process.
Glad to hear you're getting good results. What combination works for you?

[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

[mike]

My pain has progressively gotten worse since my accident 7yrs ago. I haven't as yet found any drug that does much to help with the pain, but I get some relief from Gabapentin. A physiatrist once told me that if you have the pain long enough the pain receptors will burn out and pain will subside. I think they must have carried out those experiments on cadavers, because I know no one with that experience.

[crppled007]

I didn't start having bad nerve pain, until I had a flap surgery last year. Before that, all I had to take 600 mg of Neurontin and a 1 mg Xanax. Now I have to take 3600 mg of Neurontin (Gabbapentin), 30 mg of methadone, 80 mg of baclofen and a 1 mg Xanax. All that because my surgery. the one thing that really seems to help the pain is my Xanax, it also seems to help spasms a lot, kind of helps take my mind off of it. My wife is always telling me I don't need to take it. But I tell her stop taking her Paxil and see how she feels, no comments of that one. The last time I really had nerve pain like this was right after I was first hurt. I faded down after a couple years and almost came to a stopping point. But I guess that's life
Cripp

[David Berg]

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.
http://sci.rutgers.edu/forum/showthread.php?t=58314

[rybread]

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

[mike bauer]

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

[firesmurf]

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

[imnomis]

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

[Grange]

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

[cass]

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

[jplw]

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.

[rybread]

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

[bunkalar]

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.

[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!

[David Berg]

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.

[alan]

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.

[smokymtn memories]

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??????

[kenf]

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. :)

[s2sgacia]

PAIN SUCKS.

I’m three years’ post a horrific motorcycle wreck and pain had always been my enemy. In my case though, I actually got more back functional movement where my pain was at it’s worst. In the past year I’ve actually regained wrist flexion and even a little triceps muscle strength.

To help control the pain I found that Ketoprofen Gel, worked when first applied, but only lasted an hour or so. What really did help me was Panalor, or also called Nortriptyline. That med has been amazing and has defiantly helped to relieve pain. I’ve gone from asking doctors to cut my arm off and referring to my arm as "the arm", to lifting 10+lbs weights and pushing myself in a manual wheelchair.

[Hype62]

I'm 7 years post now and still have nerve pains. I started having it about a month after my injury. First, it was just numb, but gradually it got worse and worse feeling like a burning sensation. At first I was having a hard time managing it, and it bothered me so much I couldnt even sleep at nights. Some days are ok but some days are bad. The pain changes its intensity everytime after I wake up after a sleep, so I think it might have something to do with having enough rest. It dosnt bother me much now though as I got used to it. I have never taken any medicines for it either, as I am trying to stay away from any drugs. I just kept my self busy through out the day with different hobbies, so I dont pay attention to the burning sensation, then gradually I got used to it.

[GKTrader]

Do any of you guys stand on a regular basis? I find that I get to a point where my hip flexors feel like they are "on fire" but if I get up in the standing frame it goes away.

[Stiggy]

7 years post and my nerve pain is worse this year then in the past six yrs.With little sleep due to the pain..it takes a big toll on my heart.Taking the class 2 drugs dont help with the pain..they mess with my head and make me sick.Nerve pain sucks the life right out of you!!

Stiggy

[jbpara]

It gets worse. 31 years post injury, secondary to gsw at t-2 from armed robbery (I was the one being robbed.) I've tried every medication (analgesics, anticonvulsants, etc.) and every other modality (meditation, exercise, biofeedback, etc.) and pain has just progressed, burning all day and even worse at night, most nights I wake up from pain and can't fall back asleep. next time I get shot I hope they finish me off. MDs afraid to prescribe opiates, and even then, tolerance develops, so I just live with the pain and suffering.

[quadvet]

Definitely gets worse, C5/6 complete 17 years post. Constant burning exacerbated by the smallest of pain, a wrinkle in bed, etc. It's a bitch no pain med can touch for long. Just live with it, debilitating and isolating as it is.:zombie:

[rybread]

My pain gets worse and better and worse and better depending on the season. It's not as bad when it's warm outside but when it's cold and dry, it tends to kick up pretty bad. I think he used to be a lot worse a while ago but then again maybe I'm just getting used to it. Otherwise, I've never heard of anyone getting pain relief over time. Good luck with that. I have tried taking everything to get rid of it including narcotics and stuff in my baclofen pump but none of it ever lasts very long so I've just learned to live with it the best I can. I have noticed that I have more pain in areas where I actually have a problem than just everywhere else, but it wasn't always this way.

[GoBig]

Time heals all? The pain has increased over time but that is not the only hurt I know. The changes that occur inside the body and mind of people w/ cp are absorbed by the those around us. For the first time I talked with my wife about the changes in her. She loves me and TG she is still with me but she has also changed. NP has exponential power and we must find ways to work through it or "break on through to the other side" I am not a big Doors fan but it just seemed the best phrase.

[mr_coffee]

For me it did.

I don't have any nerve pain anymore, I got off my meds as well. WHen I was on my meds it was bad when they started wearing off.

But I stayed off them, was in extreme pain for awhile but then the pain turned into itching. Now my arms just itch. They itch so much somtimes that i make htem bleed but much better than what they use to feel like.

[alan]

Time sure doesn't heal my pains. Every case is different

[airticpo]

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[WonderDerek]

My nerve pain has disappeared. After about 8-10 months post injury, my nerve pain went away. I started off on about 11 Neurontins a day or so, but was eventually lowered to about 6(they gave me hallucinations), but when I got out the hospital I was only taking them as needed. Whenever I'd have nerve pain, I'd take one. Eventually, the pain got less and less and then just stopped. I have the very rare nerve pain that shoots around my line of paralysis, but that only happens about once a month of something, so it's bearable.

[woman from Europe]

I did not have any nerve pain the first 10 years. I want even remember the next 20, it was terrible except under my pregnancies. The last 8 years have been ok, some pain but I survieve that with a little help from some medication.

So maybe after 30 years the pain burn out.

[cass]

in my case, not only has the pain gotten worse, now i have to fight to prove i can't work any more because of it...even short term dis ins which i have paid into for 27 yrs both ab and dis is doing their best to nitpik. i'll win in the end, but it sure is depressing. i'd rather work.

i lie awake in pain, like now, and remember waking to coffee and work was better than this because the pain was not as bad and i slept a bit more. now it's pain. trying to grab some sleep inbetween the pain. it is hell.