before you decde to suffer in silence

[SPORTO]

I came across this somewhere but before you decide to suffer in silence you owe it to yourself and others to read it. Before I was injured I had no idea people that were paralyised suffered from pain why should I expect others to know about ity!

"Torture, when tolerated by the public, is a crime against humanity. And central pain, in the absence of steps to correct it, is a societal scandal. But society is unlikely to allocate resources to a need it knows nothing about.
This brings into question our individual coping styles, the ways we cope with pain. Society, psychology and rehabilitation all conceive that there is a "proper" way to cope with pain. Generally speaking, it relies upon high motivation, stoicism, being "productive" (read "working") and distraction through exercise.
But how do these notions apply to someone in a constant state of pain? Even the strongest person will be exhausted by 48 hours of torture, and will need to find a psychological space that permits simple survival of self. A person with central pain can be left with a radically diminished core of existence, and must fight with everything available to maintain it. How does keeping a stiff upper lip serve such a person?
It doesn't. Pain is an impolite and boring topic to others, yet people with central pain will contribute nothing to finding a cure if they bury their suffering in politeness simply to spare the sensibilities of others. Politeness may please our doctors, but it is utter cruelty to those who follow after us. It is part of what has caused central pain to be worded out of existence and out of consideration for research dollars.
There is a time to be gracious and a time to raise Cain. This is a time to scream bloody murder until society finally becomes aware of the shame of central pain and moves toward finding a cure. We will do more for ourselves and for others by making our experience known than we ever will by going from clinic to clinic looking for a miracle cure.
Suffer "properly," and you will sentence future generations of people with central pain to a torment just like yours. Cry out, and you and they may be rescued."

[Aquitaine]

Hi Sporto,

Before I was injured, I had no idea what people who were paralyzed suffered from, if anything at all. That speaks to how far we all have to go in order for our issues to be heard by those who can make a difference. One of the things we can do is write a letter to our elected representatives and urge them to sponsor The National Pain Care Policy Act (H.R.1863), an easy way to do this is go to the APF website at:

http://www.painfoundation.org/page.asp?menu=1&item=7&file=PCPA2003_Intro.htm

then click on "Take Action" at the bottom of the page and it will take you to a sample letter ready to send. Wherever you found it, its an excellent "call to arms" for those of us suffering from Central Pain. Perhaps we can get it posted on the PainOnline site, can you remember where it came from, so it can be given proper reference? Thanks for posting it here. And you're right sporto, nobody should suffer in pain, so everyone should make sure they read this:

http://www.painonline.org/billofrights.htm

[SPORTO]

Thanks for your reply I believe the person that wrote that was Kenneth McHenry, M.D. I have been to pain online a few times! I pretty much have my pain under control so I hadn't been there lately. Although I don't have much pain now I know how frustrating it is I also know it can be more disabling than the injury itself. I went to a few doctors and the best solution they had was neurontin. Unfortunately I was one of those it didn't work real well on and besides you mix the side affects of that with those of zanaflex and it really wasn't condusive of the quality of life I wanted. I am back in school after 30 years it messed with my thought process. So I explored other options I found that acupuntre kept my pain down to manageable levels, it also helped control spasms. I no longer take medication and that leads everything else working much better. I guess the point is I forgot what a hassle it was and stopped complaining about things. Sadly western medicine can only do so much. I believe that to get relief it takes a healthy, body, mind and spirit that's where the eastern philosiphy helps out. The human spirit is a powerful healer sometimes it's just a matter of getting it focused. I'm not saying it will work for everyone but I was told from the time I was injured that each sci is different, if so why do doctors try to treat them all the same. i just want to tell people not to give up and to try all the different avenues they can.

I have a little website that I try to emphasize overcoming barriers through knowledge. I'd apreciate your input
SCI Info Exchange
www.msouza.net (http://www.msouza.net)
Thanks again

[Aquitaine]

You're welcome, and welcome back, glad to have another follower of eastern philosophies http://sci.rutgers.edu/forum/images/smilies/cool.gif. I found it helpful 28 years ago trying to recover from my initial SCI injuries. The mind is a powerful tool, when its working properly. I'm taking neurontin at the moment, I call the capsules my "stupid pills", as they are just what you described. Fortunately (or not) they are helping to reduce my pain, along with ms contin. For now all my philosophies have failed me save one, the survival philosophy. This is due to an horrific disorder called central pain "CP", which, once triggered, has no remedy and no relief. I've been through 9 different therapies, including acupuncture, as non-invasive as physical therapy through steroid injections into my spinal cord. The pain is always there in my left foot, most of time as a very low level pins and needles pain. The drugs, if taken regularly, keep that pain at that level, but without them or if I miss a dosage... it begins to feed back on itself, very quickly becoming a stabbing pain climbing up the back of my foot and leg. Finally getting so bad I have to just hang on and scream/curse/etc. At that point nothing, not even morphine, makes a dent in it. But mercifully it stops after 10-20 minutes, like some kind of orgasm of pain, it shuts down and the cycle starts over again after a half hour or so, the times vary but with the drugs in my system, the longer I'm without pain.

I'm telling you all of this because I want you to know that CP is a seriously nasty SOB thats run me up against a wall. But I've knocked down these kind of walls before and I will do it again, it starts when you finally look around and realize there's only you. Only you can get yourself around things like CP, nobody's going to do it for you. The first step is to reach out, to find others that have a wall to knock down, and this is the best place I've found to do just that. Frankly, and this is hard for guys to admit, when I finally screamed loud enough, and the docs understood none of the lower pain meds were working,and they gave me a morphine injection that didn't have any effect... the pains kept coming back, and I was da*n scared. After 26 years of dealing with SCI, when the really bad pain hits, morphine will at least knock it down somewhat. It was if they shot sugarwater into me, and it was then I knew, I was in some deep fing dodo http://sci.rutgers.edu/forum/images/smilies/eek.gif, something I'd never been up against before.

So I've found a combination of drugs that hold off the monster, and I take them, but I keep on looking for other answers, holistic or whatever, I will not allow this to keep me in a stupor half of my life, and pain the rest, I will continue to fight it until Dr. Young or someone else finds a better treatment or even (dare any of us should utter it) a cure. Right now I'm pushing the pharmacy of my health insurer (Kaiser) to get at replacement drug for neurontin called Gabritial, thats not supposed to make you as drowsey/stupid/etc., we'll see, but I gotta try, right?

I've seen your website (before this), and its very ambitious (please don't take offense, I very much admire that) and shows a desire to succeed through all of the adversity, and it certainly shows an ability to develop and organize content. I personally like the "chair enabled" page, was this all done with the CuteSITE Builder? In any case it looks like you've had some fun building it, with the Uncle John's Band tune running in the background.

Its funny how you described how you felt, right after your accident, like you saw what happened, realized there wasn't much that could be done to change it, so you dusted yourself off, and moved on. I wasn't trying to paraphrase, so that may not be exactly right, but its funny because thats how I felt. I knew I was still me, it was the rest of the world that seemed to be treating me differently. But like you, I'm at peace with the hand I've been dealt (even tho its a hard one to bluff with http://sci.rutgers.edu/forum/images/smilies/smile.gif). Even though I say I was still me, again like you, I "found" this other person inside of me that said "wake up, there's a lot more you have to do now", and somehow that gave me the strength to fight through 14 months of rehab, 41 operations under general anesthesia, and 28 years of minor procedures, aches and pains. So now I gotta deal with CP, who knew?

Anyway, my point there is after 28 years, even though we're the same age, I've been through the ringer of this SCI junk a few more times than you, which doesn't count for much, but if you ever think any of that experience can help, just give a yell.. and I'll try to yell back (it may be more of a scream, but whatever.. http://sci.rutgers.edu/forum/images/smilies/wink.gif), best of luck with your site.

Never underestimate an individual, Never overestimate a bureaucracy.

[dejerine]

Aquitaine,

Very interesting. If I understand you correctly, your shooting pain is intermittent. That is how it is in me too. It is the most severe of the pains of CP, but it is intermittent. It jolts me when it hits hard, which can be a bit embarassing.

Shooting pain is supposed to travel up the back of your spinal cord, as opposed to the burning which travels up the front. Because of its location I had a neurologist say muscle active drugs should give some relief and in me they do. I have the least nausea with clonazepam, but it makes me very sedated and drowsy. Do you also have cramping pain?

[alan]

Aquitane,

Therw's Gabitril, Keppra, and a few other anti-seizures you could try that might not be as stupefying as Neurontin.

Alan

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

[SPORTO]

I tell you what I have the utmost respect for you "old timers" I feel like you all were the pioneered the trail for us newbies. I did my rehab in Houston at TIRR which I guess is suppose to be pretty good and I thought it was they never gave me a chance to feel sorry for myself anyways. The therapist and doctors were good and I still stay in touch with a few, But the people that helped me the most were the TIRR Peers and the people that came in after hours to work out. I can't even imagine 28 years ago heavy chairs, no adaptive driving equip., very few accessible uilding, most adaptive equipment had to be pieced together. And as lame as I believe some of the drugs are they are a hell of a lot more than you had early on. It just absolutely blew me away to hear how they overcame so much to bike, ski, scuba dive, skydive, canoe, to watch these people walk their chairs up and down stairs like it was nothing just inspired me. my hat is off to all of you and I thank you for paving the way. I believe the injured are a couple feet shorter but are stronger mentally, physically, and emotionally, we have to be just to get out of bed in the morning. I really hope to give back to the as much as I've gotten out of it.
And yeah I still remember laying on that cold concrete floor no pain I was just calm amist all the panic and my biggest concern was who was going to take care of my dog, and it turned out one ofe the nurses in the ER had a farm and they took in stray dogs and she took him in. Sorry my thoughts wandered there for a sec!
As far as my pain these days it's pretty much under control thanks to acupuncture and a little self medicating. I belive the acupuncture also helped gain back some of my hips, bladder, and bowel, so now we are working on scalp acupuncture it seems to be helping some mostly with my sense of position. I don't expect miracles but then again they don't happen if you don't pursue them. And man I hope things get better for you 41 surgeries you've been through enough. Hell this is the only bone I've ever broken in my life and it was painless I'm almost embarressed for not having gone through the trauma most others have! Thanks again

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[metronycguy]

definitely try gabitril, topomax, zonegran , i have tried them all except for keppra? i tried 10mg nortriptaline? last night , didn't work at all compared to Amitriptyline, so weird if i drink 2 glasses of wine at night before sleep , i sleep fine without neuro pain, my worse neuro pain is in remission, but worse at night , during day i can usually deal with it with ultram, the acupuncture 2x a week really helps, equivalent to 20 percocet a week,
what's interesting with the wine, is that serious alcoholics will encounter great neuro pain when they dry out, they never experience the pain when drinking. the alcohol obviously causes the nerve pain, someone like me who would have a glass of wine a month at most, and with great neuro pain finds the wine works well,
but obviously not for daytime use.

[SPORTO]

Yeah it was done with cutesite builder, I happened across a free download started messing with and had a blast. You can do alot with it but right now I'm trying to learn frontpage and html in my spare time when I'm not doing the school thing. It's tough going back after 35 years.

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[SPORTO]

Man I did try Amitriptyline for a little while at night and it did do a job but it left me feeling almost nothing, I guess I need a little pain to be happy
Originally posted by metronycguy:

definitely try gabitril, topomax, zonegran , i have tried them all except for keppra? i tried 10mg nortriptaline? last night , didn't work at all compared to Amitriptyline, so weird if i drink 2 glasses of wine at night before sleep , i sleep fine without neuro pain, my worse neuro pain is in remission, but worse at night , during day i can usually deal with it with ultram, the acupuncture 2x a week really helps, equivalent to 20 percocet a week,
what's interesting with the wine, is that serious alcoholics will encounter great neuro pain when they dry out, they never experience the pain when drinking. the alcohol obviously causes the nerve pain, someone like me who would have a glass of wine a month at most, and with great neuro pain finds the wine works well,
but obviously not for daytime use.

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[metronycguy]

remissiom my ass , this is 2 nights in a row, woken up by neuro pain http://sci.rutgers.edu/forum/images/smilies/frown.gif
oh well, just tried some reefer, see if that works http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

[This message was edited by metronycguy on 04-24-04 at 02:44 AM.]

[Aquitaine]

Dejerine, You understood exactly what I described, and it is MOST embarassing at work during meetings, I'll start to say something and suddenly it hits, and I have to put up a hand and look down so they won't see my face, somehow mumble "excuse me for a sec", wait for it to subside a little, grit my teeth and start over saying, "I'm sorry, where were we?". It sucks, I get so angry at myself, its a very dangerous state of mind to get into, as the worst anger I have I reserve for myself. An unfortunate personal trait, inherited, as I also watched my father self destruct via ulcers and heart attacks from it. Right now I'm consulting for my company, working 2-3 days a week, as they know what I'm going through (its not just that they're being nice, their scared to death because I'm the only person that understands their video compression codecs http://sci.rutgers.edu/forum/images/smilies/smile.gif). Insteresting what you say about shooting pain versus burning pain. My cramping pain just restarted after I increased the neurontin to 900mg/3 times/day. Thats really weird, I get these cramping spasms about every other day now.

Alan, Metro, GABITRIL, thanks for mentioning it, sorry I misspelled it. I'm glad to hear you guys have had some experience with it, I was told its a pretty new drug and shouldn't put me to sleep as much as neurontin. However I'm a little put off by what it claims as its primary use: Anxiety Disorder. I don't think my pain involves anxiety at all. I'm going to see my doctor next week and ask him about this, and also Ultram as a breakthrough med for these new spasm pains. Sorry to hear your neuro pain is returning metro, hope you find some relief (from where-ever http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif). How has your back been Alan, found any relief for that at all?

Sporto, your quote by Dr. McHenry must have struck a nerve, haven't vented like that in a while http://sci.rutgers.edu/forum/images/smilies/smile.gif. Felt good, anyway, thanks for your words on respect <sigh> yeah, guess I'm an old timer alright. I'll tell you the worst part about being one though. Back when I was in rehab, you are absolutely right about how much worse EVERYTHING was, meds, equipment, etc. I was in rehab for 14 months, a long time when the average was 3 months. This was due to the extensive operations I needed to rebuild my spinal cord, and during all that time I had the privledge of making close friends with 4 guys, 2 were hi-level complete quads, 2 were incomplete. We were all under 20, and drove the docs and nurses nuts, but we made up our own support group, we would have gurney races on the surgical wards (we would lie down on them and use canes like we were skiing) around 3am, then have bets to see who could keep a wheelie on one wheel the longest (the incompletes of course). And the worst part? Within 4 years, they had all died from one reason or another. Part of that was the treatment available then, another part was monetary, they were all lower middle class and didn't have the resources or insurance to get the treatment they should have had, and of course, one was a suicide. That was before the internet etc., so I assumed quads just had a short life expectancy. Now I know better, but that still seems like a heavy toll.

So did you ever get your dog back? I had a companion dog (german sheperd) for 10+ years that saved my life once, so he was a pretty important friend to me, in his later years, he became just a family dog, as I didn't need his services so much. To say he was spoiled would be a severe understatement http://sci.rutgers.edu/forum/images/smilies/wink.gif. I've done some biking, no skiing (yet), but I did get a glider license. Haven't heard of scalp acupuncture, what does that affect? I think its great that you're going back to school, digging into computer/web stuff. Most of us that were injured on bikes or cars usually turned wrenches as well, and seem to have a strong aptitude for computer work. At first I hated the idea of working on nerdy computers, gawd how boring http://sci.rutgers.edu/forum/images/smilies/tongue.gif, now I don't wanna do anything else. I'll bet its tough going back, competing with the younger set http://sci.rutgers.edu/forum/images/smilies/smile.gif. I can't imagine what its like, but I have a lot of respect for your efforts, and I'd be willing to bet you'll make it just fine.

[This message was edited by Aquitaine on 04-24-04 at 11:02 AM.]

[SPORTO]

The only pain I felt during rehab was having to leave JT(my dog)my friend and companion for 15 years in Houston. He was old and ailing and I really couldn't ask my friends or family to care for him while I adjusted. I got to see him one more time.
Originally posted by Aquitaine:

Dejerine, You understood exactly what I described, and it is MOST embarassing at work during meetings, I'll start to say something and suddenly it hits, and I have to put up a hand and look down so they won't see my face, somehow mumble "excuse me for a sec", wait for it to subside a little, grit my teeth and start over saying, "I'm sorry, where were we?". It sucks, I get so angry at myself, its a very dangerous state of mind to get into, as the worst anger I have I reserve for myself. An unfortunate personal trait, inherited, as I also watched my father self destruct via ulcers and heart attacks from it. Right now I'm consulting for my company, working 2-3 days a week, as they know what I'm going through (its not just that they're being nice, their scared to death because I'm the only person that understands their video compression codecs http://sci.rutgers.edu/forum/images/smilies/smile.gif). Insteresting what you say about shooting pain versus burning pain. My cramping pain just restarted after I increased the neurontin to 900mg/3 times/day. Thats really weird, I get these cramping spasms about every other day now.

Alan, Metro, GABITRIL, thanks for mentioning it, sorry I misspelled it. I'm glad to hear you guys have had some experience with it, I was told its a pretty new drug and shouldn't put me to sleep as much as neurontin. However I'm a little put off by what it claims as its primary use: Anxiety Disorder. I don't think my pain involves anxiety at all. I'm going to see my doctor next week and ask him about this, and also Ultram as a breakthrough med for these new spasm pains. Sorry to hear your neuro pain is returning metro, hope you find some relief (from where-ever http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif). How has your back been Alan, found any relief for that at all?

Sporto, your quote by Dr. McHenry must have struck a nerve, haven't vented like that in a while http://sci.rutgers.edu/forum/images/smilies/smile.gif. Felt good, anyway, thanks for your words on respect <sigh> yeah, guess I'm an old timer alright. I'll tell you the worst part about being one though. Back when I was in rehab, you are absolutely right about how much worse EVEYTHING was, meds, equipment, etc. I was in rehab for 14 months, a long time when the average was 3 months. This was due to the extensive operations I needed to rebuild my spinal cord, and during all that time I had the privledge of making close friends with 4 guys, 2 were hi-level complete quads, 2 were incomplete. We were all under 20, and drove the docs and nurses nuts, but we made up our own support group, we would have gurney races on the surgical wards (we would lie down on them and use canes like we were skiing) around 3am, then have bets to see who could keep a wheelie on one wheel the longest (the incompletes of course). And the worst part? Within 4 years, they had all died from one reason or another. Part of that was the treatment available then, another part was monetary, they were all lower middle class and didn't have the resources or insurance to get the treatment they should have had, and of course, one was a suicide. That was before the internet etc., so I assumed quads just had a short life expectancy. Now I know better, but that still seems like a heavy toll.

So did you ever get your dog back? I had a companion dog (german sheperd) for 10+ years that saved my life once, so he was a pretty important friend to me, in his later years, he became just a family dog, as I didn't need his services so much. To say he was spoiled would be a severe understatement http://sci.rutgers.edu/forum/images/smilies/wink.gif. I've done some biking, no skiing (yet), but I did get a glider license. Haven't heard of scalp acupuncture, what does that affect? I think its great that you're going back to school, digging into computer/web stuff. Most of us that were injured on bikes or cars usually turned wrenches as well, and seem to have a strong aptitude for computer work. At first I hated the idea of working on nerdy computers, gawd how boring http://sci.rutgers.edu/forum/images/smilies/tongue.gif, now I don't wanna do anything else. I'll bet its tough going back, competing with the younger set http://sci.rutgers.edu/forum/images/smilies/smile.gif. I can't imagine what its like, but I have a lot of respect for your efforts, and I'd be willing to bet you'll make it just fine.

[This message was edited by Aquitaine on 04-24-04 at 10:39 AM.]

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[Aquitaine]

Really sorry to hear that, dogs become a very important part of our lives, don't they. Have you tried getting another one yet? I trained my german sheperd to open the door of a lower cupboard, get his food can out, shut the cupboard door, and put it up on the counter next to the opener for me. Took a few weeks http://sci.rutgers.edu/forum/images/smilies/wink.gif, but it came in really useful sometimes when I wasn't up to doing it. It was terrible when he died, but after about a year, we got another one. He's a little furball that I take for walks, and he gets my mind off things.

[SPORTO]

Nah there are times I would really like another one but there are too many things to get in order first. The main one before getting another dog is buying another house. Right now I live in an apt. behind my folks house that workmans comp built for me. Luckily I'm collecting workmans comp from a pretty good insurance company but contrary to what a lot of people think I'm not getting rich. They haven't even talked about my mmi yet which is pretty good usually that comes up at 2 years. I get enough from that to get another place but I figure I'll stay here until I'm about done with school. There are days though I don't think I can make it that long family is good but not all the time. I was glad I was hurt 1500 miles from home I could concentrate on rehab and not have to deal with family daily. If you can't tell I've always been fiercly independent so this initally put a crimp in my lifestyle. School is a good social interface but I'm surrounded by kids that are just out of high school talk about your generation gap. they still know how to study I need to relearn study habits, it sure isn't the same as when I went decades ago. The first Algebra test I had all the others in class whipped out thir calculators and flew through it while I worked everything out by hand I didn't realize you could use them on tests. Back in my day we never would have considered using calculators of coarse they hadn't been invented yet!

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[Aquitaine]

Yeah, an apartment would make it hard to have a dog. I can't imagine what its like going back to school now, it was hard enough for me to go back to college after 2 years in hospitals and rehab. The social interaction sounds good though, with all the pain I'm in, I've been more of a shut-in lately. I just got a new wheelchair though, titanium and very lightweight. I've started getting out, but I gotta get my butt up and out more than I have, somehow I have to get past this pain and start doing things again, I'm a roamer by nature.

[SPORTO]

You asked about scalp acupuncture and I spaced it off sorry! Scalp acupuncture is very new 30-40 years old. It was developed and mostly used for MS victims but is succsessful with other nerological disorders. For SCI it's best used as soon as possible after injury but has had success used later on. Its usually used along with breathing exercises and visulazation. Instead of being stuck straight in they are inserted at a 15 degree angle and then manipulated. sessions can last up to 72 hours. It's a technique I belive they are using with sucsess at project walk.http://www.projectwalk.org/
this is a good source for alternative therapies
http://www.healingtherapies.info/scalp_acupuncture.htm
Titaniums are nice i was able to try a tylite, the quickie lite, & the top end titanium. I opted for the top end terminator ss mainly because I liked the ride and I didn't need to worry about the few extra pounds because I don't have to pull it in a car. Wouldn't ya know it they discontinued it the year I bought it and started offering suspension on their titanium chair. I figured shocks would help with a smooth ride a not trigger my spasms as much.
Hey its been good talking with ya! I'm t-11 what level are you


Originally posted by Aquitaine:

Yeah, an apartment would make it hard to have a dog. I can't imagine what its like going back to school now, it was hard enough for me to go back to college after 2 years in hospitals and rehab. The social interaction sounds good though, with all the pain I'm in, I've been more of a shut-in lately. I just got a new wheelchair though, titanium and very lightweight. I've started getting out, but I gotta get my butt up and out more than I have, somehow I have to get past this pain and start doing things again, I'm a roamer by nature.

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[Aquitaine]

I'm an L4 "incomplete", my L4 was smashed during the accident, and my cord was badly buised but intact, leaving me without any vertebre for about a month until they found someone willing to try and rebuild it. They took two pieces of bone from my hip and fashioned a vertebre out of them, then pinned it all together, back then it was the very first time this kind of lamenectomy had ever been done, thats why I was in the hospital so long.

[SPORTO]

Now that's a story you can be proud of!!!!!!!

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[Aquitaine]

It was done at Thomas Jefferson University Hospital, I remember being in this "operating theater", with students watching, and I had to sign a release so the surgeon could put pictures of my back in the text book he was writing. I owe a lot to that doctor, to this day, I haven't had ANY back pain. Obviously, since my L3, the resurrected L4 and L5 are all pinned together, my back is a little "stiff" http://sci.rutgers.edu/forum/images/smilies/wink.gif. Other than that, I've been able to do anything anybody else can do, like a couple years after starting to work, I bought an old chevy nova SS and built a 9 sec. e/gas dragster out of it. The guys that helped me build it, let me put hand controls in it and I did several runs one sunday. Nowhere near 9 sec. runs http://sci.rutgers.edu/forum/images/smilies/biggrin.gif, but it was such a rush to get back into a race car, and even with those kind of G's my back felt great. I'm proud, proud of that surgeon, he's one of those docs that make up for all the quacks that I've had to deal with over the years. We should all be proud that we have a medical system that produces such people, we could wish that it would produce more than it does, but I count myself fortunate that I was operated on by such a doctor.

[metronycguy]

gabitril is a anti sezure med same as neurontin, i actually found neurontin to have much more of a anti axiety effect on me than gabitril, i probably would try gabitril again if my pain comes back 24/7. pain is so bizarre, for 3 nights i had high neuro pain, that awoke me, and the only thing i could figure out from my logs, was that i didnt take any ultram on those 3 days , i usually need to take a ultram at about 6 or 7 pm, as my pain even when in remission gets worse in evening. on the last 3 days i didnt take any ultram and was awoken by pain at 230 3 am. i usally have been drinking wine around 9pm to help with sleep, and skipping the ambien, i feel better in the morning with the wine.
i could only surmise the wine was giving the ultram a kick and thats why i slept through the night. thenights i took no ultram earlier are the nights i awoke with pain..

[SPORTO]

Could it be the ultram just helps you sleep deeper so the pain doesnt wake you up. I know when I would take ultram ambient neurontin and zanaflex a frieght train wouldnt wake me up. But I've never had enough pain to wake me up thank god.

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[SPORTO]

I've been reading recently that there is a relationship between exercise both mental and physical with pain. I have noticed since being back in school I don't exercise as much and I seem to have more discomfort than when I'm out doing things.
Originally posted by Aquitaine:

Yeah, an apartment would make it hard to have a dog. I can't imagine what its like going back to school now, it was hard enough for me to go back to college after 2 years in hospitals and rehab. The social interaction sounds good though, with all the pain I'm in, I've been more of a shut-in lately. I just got a new wheelchair though, titanium and very lightweight. I've started getting out, but I gotta get my butt up and out more than I have, somehow I have to get past this pain and start doing things again, I'm a roamer by nature.

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[Aquitaine]

Yeah, I KNOW it does. I had spasms last year that were so bad I went to the ER, 'cause I was pretty sure there was something major wrong with me. The area where I was having the pain was near an earlier surgery for a decubitis ulcer, so I thought I must have burst an artery, something bad, cause I was in agonizing pain. They did many, many tests and couldn't find anything. The doctor asked me very carefully about my activity level recently, and I told her that I had been working on a project just about around the clock and had been lying down most of the time. So she explained that lack of exercise together with high stress was causing the pain. She gave me some darvoset and told me to exercise more. So I went home muttering how stupid doctors are, sure that there was something wrong with me, and began exercising about an hour everyday with weights. A week later the pains were much less, 2 weeks and they were gone. She wasn't so stupid, exercise is important, once again for the past 3 weeks, I've been hard at work on another project, no exercise, and last night the pains came back. Time to get back to exercisin again http://sci.rutgers.edu/forum/images/smilies/smile.gif!

[SPORTO]

Gets to be a 2 edge sword the pain keeps you from wanting to exercise but relaxing only makes it worse. Semester break is here and relaxing and taking it easy sounds good but I know that's no longer an option

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[alan]

Exercise only aggravates my back.

Alan

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

[duge]

Can anyone tell me if any of the pain ever goes away? I can't exercise it hurt's to damm bad! where I have sat slumped over at work I think I have messed up my fushion but I'm not about to go thru that again. my feet hurt so bad!!! my tailbone and just a heaviness feeling in my leg's
sorry for venting but man it hurt's
duge

T-12 incomplete 10-3-02

[woman from Europe]

Duge

For me the pain come and go. Three years with pain, some years without and I think it has gone away. Then suddenly, it starts again and keep going on for some years and then it disepear again. I have been like that for the last 25 years. It is like a wave, up and down.

But you are at least so lucky you are living in a country where you can get painkillers. The doctors here gives the strong medicin other people on this forum is talking about, only to dying cancerpatients.

[metronycguy]

Originally posted by sporto:

Could it be the ultram just helps you sleep deeper so the pain doesnt wake you up.


the ultram works well on the pain, the bad thing is i have a problem sleeping with it usually, my pain has always been worse at night even when it was 24/7.
it still wakes me up, and the nights that i have restless sleep , i realize its from the pain keeping waking me up, if it realy gets bad i wake up out of a sound sleep with electric shocks in my toes

[Aquitaine]

Originally posted by metronycguy:

the ultram works well on the pain, the bad thing is i have a problem sleeping with it usually...

Metro, Can you please elaborate on that? I just got my doc to give me ultram and although I checked it out and asked others, the primary reason I wanted to try it was from your posts (not that you specifically recommended it or anything, not trying to pin any kind of blame here http://sci.rutgers.edu/forum/images/smilies/wink.gif). But I'd like to know any negatives, he's prescribed 1-2 (50mg) tablets every 4 to 6hrs as needed for pain. Its for breakthrough pain.

Woman From Europe, Could you also elaborate on the lack of painkillers in your country (also, what country is that)? Although the US has some physicians who are well versed in dealing with pain, they are only in some areas (california for example typically has more clinics with an enlighted view of pain treatment, like actually implementing pain management protocols http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif). But we are still fighting to get pain better recognized all across the country as the terrible waste of human resource that it is. I'm always interested in how pain is being treated in other areas, or other countries for that matter.

Duge, I think you have a couple of different problems, possibly serious. Have you been to your doctor about this yet? Your pain may or may not be helped by exercise, it could actually become worse for it. But in any case, for exercise to help, it takes time. Exercise has been a part of my everyday life ever since I left rehab 25 years ago, whether I was having pain or not. Some of the days that I don't are those days when I am stressed about a work related problem, and not only don't exercise, but rarely even move while lying down with my notebook computer on my lap. Otherwise the only times I don't exercise are when I'm very ill, or recovering from a surgery/procedure and my doctor tells me not to.

Duge, Alan, if your doctors are telling you not to exercise, then don't. However if they think it might help, then I really think you should try. I guess I was lucky, I ran into a great PT while I still lived in Philly. He was a sports medicine specialist, worked part time for the Eagles (football team). He also was in the army during the later years of the vietnam war and worked with a number of paras and quads in veterans hospitals on both the east and west coast. He was one tough taskmaster who didn't take no, or gee it hurts, for an answer. On the other hand, he always seemed to know when I had really reached my limit and wouldn't let me go any further, even if I thought I could. I initially was able to receive this therapist's help from my insurance, and later had to pay for it myself. Is there any way that you could get this type of help, through insurance or on your own? If you can, look for a good PT guy/gal in your area, and ask what experience they've had with SCI patients. If you feel like you can trust their abilities, go for it and work through the pain. Did I say it was easy? He11 no! I know you're in pain, from the posts I've read here and painonline, you've been dealt a really lousy hand, and exercise is no guarantee you'll get any relief, in fact you may initially feel worse. But it gave me something to concentrate on besides just the pain, I had goals and a plan to try and raise my own abilites up a notch. And as an added perk, everyday things just seemed easier to do, instead of something to be dreaded and planed, transfering from/to a chair became effortless. I don't know if I can equate my situation to yours or anyones, but as one example (of many problems I've had http://sci.rutgers.edu/forum/images/smilies/smile.gif), I had to come back from a broken hip, compound fracture. It was excruciating pain just to move after I got out of traction, the hospital's rehab was helpful but I left the hospital in a much reduced state. I couldn't have come back from that without the help of additional exercise, I ended up paying for it, but it was money well spent. Anyway, that's my two cents guys, and I sincerely hope exercise can help you with your terrible pain.

[SPORTO]

You are right! I wouldn't want to live anywhere else...but everytime I hear about animal trial I get this picture of a mouse in a body jacket with his stiff leg braces on working out on the parellel bars http://sci.rutgers.edu/forum/images/smilies/confused.gif as far as exercise for pain like they say all injuries are different what works for one person doesnt work for another. What you can do is keep like a journal maybe that way you can isolate what triggers your pain. I know the best thing I can do is keep myself ocupied the pain is still there but I don't notice it so much when I am busy

With all of our running and all of our cunning
If we couldn't laugh we would all go insane

[metronycguy]

Aquitaine , i have a problem sleeping when i take ultram without other meds, unless i had a full day with no naps and am exhausted.
when i was taking neurontin i had no problem sleeping with ultram,
last night i took ultram /ambien/10mg nortriptyline and for a couple hours till the pain woke me up at 330am, if i slept better with it, i would never take the percocet in the evening, however i find when i awake at 3am, i need to take percocet if i want to get back to sleep

[Aquitaine]

Metro,

Thanks for your describing your experiences, I just tried Ultram. Took two 50mg tablets at 7:30pm and its now 10:30pm. Unfortunately, I don't really feel any pain relief, have a slight ringing in my ears, but other than that, I can't tell I've taken anything. I took it when one of these spasm attacks started again (in years past, I would take darvon compound for it, everything I've read describes Ultram as more powerful than that). According to the 'script, I can take two more in an hour, so I'll try that. <sigh> I wonder if this will ever end sometimes. My doctor is a wonderful guy, who has been as helpful as I could ask for, but even he is tried of seeing me come back, you can see the frustration in his eyes now, I don't think he'll give up on me, but I still need more help with this. So the question is, how long should I try to see if Ultram works? A week, 2 weeks, a month? Opinions please http://sci.rutgers.edu/forum/images/smilies/confused.gif, Thanks.

[Aquitaine]

Metro,

I took 2 more ultram and its 1:15am, its all seemed to catch up with me now, can now definitely feel it. I think this might help now, hurrah! Gonna try for some sleep, let ya all know how it helps with that later http://sci.rutgers.edu/forum/images/smilies/wink.gif.

[metronycguy]

Aquitaine , glad you brought that up , i have it so much , i forger about it, its not that bad, but its definately there, i have it now, and i took a ultram 45 minutes ago,
i would think ultram will work pretty quickly , it along the linesf percocet, but not as govt regulated, i actally usually get better pain relief with my shocks with ultram, however without neurontin in the mix, i need another drug such as ambien for sleep usaully, you have a lot more meds in your system over the years , so as you mentioned before , with anesthisia , you may need a higher dose than me to get relief..i am glad it started working for you, i never took it for spasm myself..

[Aquitaine]

Hi Metro,

All I can say is thanks for mentioning this to me, after 2 days the Ultram seems to be working very well at reducing the pain spasms almost completely. Excuse my absence from the forum, but I've been catching up on some much needed sleep http://sci.rutgers.edu/forum/images/smilies/smile.gif. I should have remembered, I've been used to the morphine, these type of drugs like tramadol require a certain serum level be attained before they show any real benefit. Only need to take 2 tablets and I'm ok for 12 hours now, its great. <sigh> if only my CP could be swept aside as easy http://sci.rutgers.edu/forum/images/smilies/frown.gif.