Pain In Incomplete Paraplegics
#1
Posted 05 December 2011 - 11:36 PM
#2
Posted 06 December 2011 - 12:25 AM
#3
Posted 06 December 2011 - 12:33 AM
dreamerr, on 06 December 2011 - 12:25 AM, said:
#5
Posted 06 December 2011 - 12:58 AM
hannibal, on 06 December 2011 - 12:43 AM, said:
#6
Posted 06 December 2011 - 01:27 AM
I was injuryed in 1990, horrible nerve pain for yrs, a lot because I refused to take meds and when I did I took them improperly. I tried all the tramodol pero whatevers, horrible stuff, Then they put me on Diluadid 4 x/day, and for the first time in a long time I could manage.
The side effects are few for me a soon after none, Pain and cold burning bearable. they added restoril for sleep, which is really important, I helped myself with some bodybuilding suplements, and started excercising again. It's important to get on the pain as soon as you feel it starting, not man it out till you cannot take anymore, that was my mistake for along time. I was told by a very good pain dr that it takes 4x the amount of medication to remove pain as it does to prevent it.
When they started me on gabaphentin, I was able to reduce the dilaudid from 16mg 4 x/day to 4mg x/day plus the gaba level that worked, I've been on dilaudid for 20yrs + and gabphentin for 10+ . They only recently needed to increase it because I'm turning into an old fart, and I was over doing it knowingly.
Finding a good multi approach pain Dr is the hardest, there's a lot of arseholes out there. Find something that works get as fit as you can and stay as fit as you can.
you can find a nearly normal life, you would belive the shit, I,ve done.
all the best
#7
Posted 06 December 2011 - 01:37 AM
harlton, on 06 December 2011 - 01:27 AM, said:
I was injuryed in 1990, horrible nerve pain for yrs, a lot because I refused to take meds and when I did I took them improperly. I tried all the tramodol pero whatevers, horrible stuff, Then they put me on Diluadid 4 x/day, and for the first time in a long time I could manage.
The side effects are few for me a soon after none, Pain and cold burning bearable. they added restoril for sleep, which is really important, I helped myself with some bodybuilding suplements, and started excercising again. It's important to get on the pain as soon as you feel it starting, not man it out till you cannot take anymore, that was my mistake for along time. I was told by a very good pain dr that it takes 4x the amount of medication to remove pain as it does to prevent it.
When they started me on gabaphentin, I was able to reduce the dilaudid from 16mg 4 x/day to 4mg x/day plus the gaba level that worked, I've been on dilaudid for 20yrs + and gabphentin for 10+ . They only recently needed to increase it because I'm turning into an old fart, and I was over doing it knowingly.
Finding a good multi approach pain Dr is the hardest, there's a lot of arseholes out there. Find something that works get as fit as you can and stay as fit as you can.
you can find a nearly normal life, you would belive the shit, I,ve done.
all the best
harlton, on 06 December 2011 - 01:27 AM, said:
I was injuryed in 1990, horrible nerve pain for yrs, a lot because I refused to take meds and when I did I took them improperly. I tried all the tramodol pero whatevers, horrible stuff, Then they put me on Diluadid 4 x/day, and for the first time in a long time I could manage.
The side effects are few for me a soon after none, Pain and cold burning bearable. they added restoril for sleep, which is really important, I helped myself with some bodybuilding suplements, and started excercising again. It's important to get on the pain as soon as you feel it starting, not man it out till you cannot take anymore, that was my mistake for along time. I was told by a very good pain dr that it takes 4x the amount of medication to remove pain as it does to prevent it.
When they started me on gabaphentin, I was able to reduce the dilaudid from 16mg 4 x/day to 4mg x/day plus the gaba level that worked, I've been on dilaudid for 20yrs + and gabphentin for 10+ . They only recently needed to increase it because I'm turning into an old fart, and I was over doing it knowingly.
Finding a good multi approach pain Dr is the hardest, there's a lot of arseholes out there. Find something that works get as fit as you can and stay as fit as you can.
you can find a nearly normal life, you would belive the shit, I,ve done.
all the best
#8
Posted 06 December 2011 - 02:55 AM
*Wheelchairs are made of a special ocular magnetic alloy......they're "eyeball magnets".*
*I USE a wheelchair, that does NOT make ME a wheelchair!*
#9
Posted 06 December 2011 - 03:07 AM
wheeliebear75, on 06 December 2011 - 02:55 AM, said:
#10
Posted 06 December 2011 - 03:33 AM
I guess I'm in the stubborn head in the sand category with pain. I ignore as much as I can. I put pain in mental boxes and deal with it later if need be. (At night...hello insomnia)
I try to stay with natural remedies during the day. I tend to build up tolerances for things. With herbals I can change a few things and not have as much worry of that.
My worst enemy is the nerve pain. All of mine tends to bloom at night.
It seems like you have pain all day. Do you go to a pain management doctor? ( if you said so, I missed it) I ask because pain management may be of more use.
A TENS unit could be a good thing. Bone pain is no fun.
#11
Posted 06 December 2011 - 04:18 AM
lavenderthistle, on 06 December 2011 - 03:33 AM, said:
I guess I'm in the stubborn head in the sand category with pain. I ignore as much as I can. I put pain in mental boxes and deal with it later if need be. (At night...hello insomnia)
I try to stay with natural remedies during the day. I tend to build up tolerances for things. With herbals I can change a few things and not have as much worry of that.
My worst enemy is the nerve pain. All of mine tends to bloom at night.
It seems like you have pain all day. Do you go to a pain management doctor? ( if you said so, I missed it) I ask because pain management may be of more use.
A TENS unit could be a good thing. Bone pain is no fun.
#12
Posted 06 December 2011 - 04:42 AM
My feet calm down a little if I rub them but it comes back with a vengeance and the skin on the back of my butt feels like it has been grated off and it's red raw.
I used to have severe burning in my left thigh and left foot but that seems to have gone to be replaced by raw feelings in my feet and butt as I said.
The real kicker is that when I was in rehab and the first 6 months I was out of hospital my feet felt like they were encased in warm sand and it was magic! Just a distant memory now.
EC
#13
Posted 06 December 2011 - 04:52 AM
Edinburgh Colin, on 06 December 2011 - 04:42 AM, said:
My feet calm down a little if I rub them but it comes back with a vengeance and the skin on the back of my butt feels like it has been grated off and it's red raw.
I used to have severe burning in my left thigh and left foot but that seems to have gone to be replaced by raw feelings in my feet and butt as I said.
The real kicker is that when I was in rehab and the first 6 months I was out of hospital my feet felt like they were encased in warm sand and it was magic! Just a distant memory now.
EC
#14
Posted 06 December 2011 - 09:39 AM
The 1st thing to return was that when the nurses would cath me I could sort of squeeze my stomach muscles & it would sometimes make the lower abs also push & I could "push" the urine out a bit faster than just gravity. I'd say the next thing was I don't remember wiggling a toe...what I remember was being able not to lift my legs but I could make them jiggle if I tried kicking. And I remember being able to make the foot go from side to side (heel staying on the bed but the upper 1/2 going from left to right...swinging the TOES).
When they 1st started getting me to stand (not the standing frame) with a....I think it's called a "Z-frame"? It's a walker but it's not like the old lady style it's MUCH taller & you have your arms higher up & they strap the arms with Velcro to it. And at 1st I could only stand....NOT pick up my feet. So they (PTs) started off with moving my feet forward FOR me. I probably would have gotten a quicker start on re-learning to walk but I also had dislocated my neck & some other vertebra so there was a TON of pulled muscles in my back & neck. We progressed on to a smaller walker but it still had the arms bent & holding the arms in an "L" shape just lower than before. When I 1st started standing/walking I could barely tell if the ground was actually there or not....it was TRULY like walking on stilts.
After working with PT we then went to granny style walker with wheels on all 4 points. When I went to forearm crutches at 1st my balance was still
The motor & sensory signals started coming back though I've never gotten back FULL use or sensation it has come back for the most part. I can tell that I'm being touched & if it is dull or sharp but can't tell if I'm being touched by a finger or an eraser. And although I can tell if the ground is sold under my feet & usually tell if it is squishy like grass or hard like concrete, but can NOT tell if something like a garden hose or a plumb(fell off a friend's porch cuz of a wayward plumb) is under my foot. So it is still somewhat like walking on stilts just not quite as bad.
If I sit on the floor on my butt I can use my legs to push my butt towards what ever is behind me but not towards what is ahead of me. And if I crawl on my hands & knees....I can crawl forward & use the hips like I do when I walk to drag the legs forward but to crawl backwards is just me pushing myself backwards sliding on my knees.
It was around the 7mo mark that I started to be able to use the "Z-frame" AND when I started to be able to use the hips to lift the legs....the reason I remember THAT was #1 it was "our Christmas present" that year + it's pretty hard to forget when my Mom said she didn't remember crying the 1st time I learned to walk(now I'M in tears....ah memories....the good the bad & the ugly.)
*Wheelchairs are made of a special ocular magnetic alloy......they're "eyeball magnets".*
*I USE a wheelchair, that does NOT make ME a wheelchair!*
#15
Posted 06 December 2011 - 12:41 PM
wheeliebear75, on 06 December 2011 - 09:39 AM, said:
The 1st thing to return was that when the nurses would cath me I could sort of squeeze my stomach muscles & it would sometimes make the lower abs also push & I could "push" the urine out a bit faster than just gravity. I'd say the next thing was I don't remember wiggling a toe...what I remember was being able not to lift my legs but I could make them jiggle if I tried kicking. And I remember being able to make the foot go from side to side (heel staying on the bed but the upper 1/2 going from left to right...swinging the TOES).
When they 1st started getting me to stand (not the standing frame) with a....I think it's called a "Z-frame"? It's a walker but it's not like the old lady style it's MUCH taller & you have your arms higher up & they strap the arms with Velcro to it. And at 1st I could only stand....NOT pick up my feet. So they (PTs) started off with moving my feet forward FOR me. I probably would have gotten a quicker start on re-learning to walk but I also had dislocated my neck & some other vertebra so there was a TON of pulled muscles in my back & neck. We progressed on to a smaller walker but it still had the arms bent & holding the arms in an "L" shape just lower than before. When I 1st started standing/walking I could barely tell if the ground was actually there or not....it was TRULY like walking on stilts.
After working with PT we then went to granny style walker with wheels on all 4 points. When I went to forearm crutches at 1st my balance was still
The motor & sensory signals started coming back though I've never gotten back FULL use or sensation it has come back for the most part. I can tell that I'm being touched & if it is dull or sharp but can't tell if I'm being touched by a finger or an eraser. And although I can tell if the ground is sold under my feet & usually tell if it is squishy like grass or hard like concrete, but can NOT tell if something like a garden hose or a plumb(fell off a friend's porch cuz of a wayward plumb) is under my foot. So it is still somewhat like walking on stilts just not quite as bad.
If I sit on the floor on my butt I can use my legs to push my butt towards what ever is behind me but not towards what is ahead of me. And if I crawl on my hands & knees....I can crawl forward & use the hips like I do when I walk to drag the legs forward but to crawl backwards is just me pushing myself backwards sliding on my knees.
It was around the 7mo mark that I started to be able to use the "Z-frame" AND when I started to be able to use the hips to lift the legs....the reason I remember THAT was #1 it was "our Christmas present" that year + it's pretty hard to forget when my Mom said she didn't remember crying the 1st time I learned to walk(now I'M in tears....ah memories....the good the bad & the ugly.)
#16
Posted 06 December 2011 - 01:56 PM
strngink, on 06 December 2011 - 12:58 AM, said:
hannibal, on 06 December 2011 - 12:43 AM, said:
No problem, I have moderate movement in my right leg and trace in my left. I can stand but have difficulty controlling my knees and bending me knees. I also have bad spacisty which prevents movement in my legs sometimes too.
#17
Posted 06 December 2011 - 03:01 PM
strngink, on 06 December 2011 - 12:41 PM, said:
wheeliebear75, on 06 December 2011 - 09:39 AM, said:
The 1st thing to return was that when the nurses would cath me I could sort of squeeze my stomach muscles & it would sometimes make the lower abs also push & I could "push" the urine out a bit faster than just gravity. I'd say the next thing was I don't remember wiggling a toe...what I remember was being able not to lift my legs but I could make them jiggle if I tried kicking. And I remember being able to make the foot go from side to side (heel staying on the bed but the upper 1/2 going from left to right...swinging the TOES).
When they 1st started getting me to stand (not the standing frame) with a....I think it's called a "Z-frame"? It's a walker but it's not like the old lady style it's MUCH taller & you have your arms higher up & they strap the arms with Velcro to it. And at 1st I could only stand....NOT pick up my feet. So they (PTs) started off with moving my feet forward FOR me. I probably would have gotten a quicker start on re-learning to walk but I also had dislocated my neck & some other vertebra so there was a TON of pulled muscles in my back & neck. We progressed on to a smaller walker but it still had the arms bent & holding the arms in an "L" shape just lower than before. When I 1st started standing/walking I could barely tell if the ground was actually there or not....it was TRULY like walking on stilts.
After working with PT we then went to granny style walker with wheels on all 4 points. When I went to forearm crutches at 1st my balance was still
The motor & sensory signals started coming back though I've never gotten back FULL use or sensation it has come back for the most part. I can tell that I'm being touched & if it is dull or sharp but can't tell if I'm being touched by a finger or an eraser. And although I can tell if the ground is sold under my feet & usually tell if it is squishy like grass or hard like concrete, but can NOT tell if something like a garden hose or a plumb(fell off a friend's porch cuz of a wayward plumb) is under my foot. So it is still somewhat like walking on stilts just not quite as bad.
If I sit on the floor on my butt I can use my legs to push my butt towards what ever is behind me but not towards what is ahead of me. And if I crawl on my hands & knees....I can crawl forward & use the hips like I do when I walk to drag the legs forward but to crawl backwards is just me pushing myself backwards sliding on my knees.
It was around the 7mo mark that I started to be able to use the "Z-frame" AND when I started to be able to use the hips to lift the legs....the reason I remember THAT was #1 it was "our Christmas present" that year + it's pretty hard to forget when my Mom said she didn't remember crying the 1st time I learned to walk(now I'M in tears....ah memories....the good the bad & the ugly.)
You've still got some more time yet on where you can make gains....& some have reported improvements even after the 18mo mark.
*Wheelchairs are made of a special ocular magnetic alloy......they're "eyeball magnets".*
*I USE a wheelchair, that does NOT make ME a wheelchair!*
#19
Posted 01 March 2012 - 04:40 AM
I was reading the other comments, and my recovery had many similarities to the others. The pain got worse, as more started to come back. I had a lot of trouble with cold burning in my legs,and thought I was becoming Scott of the Arseantic. Everything I did for almost the first two years made it a lot worse, pain wise. My legs atrophied to almost nothing, and everything below the waist was pretty much useless.
Getting control of the pain and the testosterone replacement, happened close together, and so did the turning point. My Doctors bitched at me about manning things out, and pushing myself into absolute agony, I had resisted using, and the drugs they had tried prior to dilaudid they either didn't work or had to many side effects for me to deal with, what I was trying to cope with,this was out of the question, now being a single, full custodial parent.
I must say trying to be a tough guy, seems to have caused nearly all of my problems, second to that was listening to lazy Dr's not offering workable treatment options, or options in their finaicial best interests. Sad but true. Hope this helps. Ian
#20
Posted 25 March 2012 - 12:37 AM
1) massage
2) stretching
3) Exercise to exhaustion (if possible)
4) heated pool or hot tub
5) lay down with legs elevated above heart
6) heat pad
This is obviously just my opinion, so they may work better or worse for you. Rock on bro.
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