[freedomdan]

Can you guys tell me when you started getting spasms after injury? How many days, weeks, months after?

Also, where do you get them most?
Some I heard thinking about moving and get them? Others when they are in an uncomfortable position?

[knowthill]

It took me about 10 year before they became a big problem. These type of spasms effect my long legs. Rock me back and forth enough to knock me out of my ridged wheel chair. They pound up and down hard enough to wake me at night. I now have a Baclofen pimp and the spasms seem under control.

[Kwag_Myers]

About six months post along with painful impulses up and down my legs. The Baclofen takes care of the painful impulses for the most part.

I can go for days without a spasm, and then there are days when I get them all day long. Mostly in my feet, but yesterday they were in my thighs pulling my knees together.

I haven't really noticed any triggers other than they tend to happen at the most inopportune time.

[qbounce]

I remember getting them VERY early on. While in the hospital, one month post injury the Physical Therapist would stretch me and my legs would fight her somthing fierce! Muscles spazm on their own accord, usually to help keep the blood flowing. . . it's got NOTHING to do with your own controlled movement.

Sometimes they spazm more if you have an injury, uti, fatigued, or like you mentioned, in an uncomfortable position or one position to long.

[Quad65]

I got them pretty soon after my injury, too. While some can be an inconvenience and a problem, they've been quite helpful to me. They can help me with transfers, getting dressed, grasping things, keeping muscle tone to a degree, etc.
They can happen on their own, due to physical irritation or pain stimulus and I can also trigger them to help with a task. Sometimes, I'll lift my leg slightly off the footrest and let it drop to generate a little foot pounding to get some blood flowing or loosen up my foot or leg. I used to give my daughter 'horsey rides' on my knee when she was a tyke.

[In The Wind]

Spasms…yeppers, me an spaz go way back…They started when I was at rehab, the obvious full body ones that would squeeze me so hard I groaned, legs shoot straight out full force, ankle twisting all around.

They also affect my right arm and hand. Squeezes my hand at full force..

I’ve noticed some difference in them, like a response to pain is a quick jerking from the source of pain to the next proximal joint. Like if I tear a nail, which I do sometimes, My foot jerks up and down.

Any sort of stretching from around the rib cage down will start the violent extension/flexion thing, leg straight out, then back up. When I get into my truck sometime they stick straight out, and can make transfers difficult. Running over bumps in my wheelchair will start them, and I’ve gotten some strange looks due to it. And they absolutely will drag me out of my chair if I’m not careful. Clonus sometimes, enough to knock the foot off.

I sleep in the nude, as we all know when things go bad, extra clothes just get in the way. So the first thing I do every morning is pull on a pair of shorts that I keep next to the bed.

I guess I should film this sometime, and I don’t know if it’s like this for any others, but getting that pair of shorts on is like a freaking wrestling match. Slide to edge of bed, roll on back, legs shot straight out violent, then rocket full force back to chest, repeat, repeat, repeat. Legs seem to tire and shout out and stop, but remain rigid. Then I can pull behind my right knee. This breaks the tone and left leg will follow it up so I can get socks on. Whole mess starts over as I rock from side to side to pull up shorts. They are also more actively excitable by me during this time.

I roll from side to side at night and this usually means going through the whole process because part of rolling over for me is setting up. Also at night I get deep ones that feel like they're on the front of my hips, and they cause my leg to snap up to my chest.

I wear a condom cath at night and Right before my bladder starts to empty it starts spasming. I can’t feel the bladder, but it causes my legs to do the same pattern out, in.

Bladder infections cause my right ankle to violently rotate. It’s dam irritating.

My right leg is much worse about spasming, and is larger than my left.

And for some reason when I lay on my side, either side, my legs always spasm up to the fetal position.

Standing greatly reduces the spasms and has a direct impact on the quality of my sleep.

[Jackiefff]

I take about 40 mg of baclofan a day but they still get bad.. they are the worse when i wake up, or of i have been in my chair all day my legs get reeeally tight and spaz! When I get into bed and lie down my legs shoot straight out and shake, and my legs also bend up into fetal position when i lie on my side! so annoying, then in the morning i have to fight with them to go straight so I can get out of bed!

[Emmy]

My husband has spasms all the time. It started when he started the Christopher Reeve Locomotor therapy. They drive him and ME crazy! He says they hurt, I agree! He kicks me in the back all night long. He has the fetal problem too. (Sometimes I'm scared his knees are going to shatter!) A few weeks ago we both woke up at 5 something in the morning and we thought he was having bad ones in his legs/hips- the head board was beating the wall- then the next morning on the news it said we had an EARTHQUAKE! OOPS- we just blamed it on his spasms!

He had a bad set while driving one time and we ran over two yard signs, anyone know of anything to put over foot pedals?

[eujei]

spasmz start happening in first neuron injuries, mainly quads and T/D lesons, when the medullary shock phase ends. Then you enter the hyperreflex phase. When something stretchs your muscle, it defends itself by contracting. this is a spasm. That happens in AB too. when the doctor hits your knee with that little hammer, thats what happens, but in a much weaker way. and also in your case, when your muscle is relaxing after this first contraction, it senses its stretching again and contracts again and so on.. and here you got a cycle. this is clonus. this is why your feet wont stop unless you prevent it from contracting, by putting weight on your knee, or prevent it from stretching again, by lifting the knee and dropping it slowly.
Makings things slowly is the best way to avoid spasms, because muscles dont feel the need to defend itself.

[Tired of hurting]

My legs starter spasming right away after injury. I kept telling the Dr.s they kept saying Oh the Soma will take care of that...NOT After 3 1/2 years I just got a baclofen pump inplanted. Oh ya I have relief now. What a pleasure to wake up in the morning,and not be in severe pain. Pump is at 274. every 24 hrs. It's programed for more at night. Sometimes my toes still spasm. So a little more will help.

This post has been edited by Tired of hurting: 06 May 2008 - 08:03 PM

[Emily C]

Hi...
I didn't have an accident, my condition is congenital.
So....My legs have just started twitching,cramping, hurting. So much so that they jump off of the bed sometimes. It's only been happening the last few months, off and on. I was dx/para on 12/28/07.
I just rub them or pick them up and they start to recede...

HT answers your question!!

[blckchns]

Jackiefff, on May 5 2008, 07:45 PM, said:

I take about 40 mg of baclofan a day but they still get bad.. they are the worse when i wake up, or of i have been in my chair all day my legs get reeeally tight and spaz! When I get into bed and lie down my legs shoot straight out and shake, and my legs also bend up into fetal position when i lie on my side! so annoying, then in the morning i have to fight with them to go straight so I can get out of bed!

I'm the same way. Very faking annoying and I'm 90 mg of baclofan a day. I also spaz in my stomach and back. Grrr!!!

[mjtpopus]

I started getting them about 5 years post injury. They aren't bad enough to toss me out of my chair but sometimes they cause my legs to jump up and down for about 15 seconds. Everytime I lay down they spasm for about 30 seconds and then stop. I've noticed that if you stretch for about 15 minutes a day it helps but I know that I am not completely faithful to this routine. I honestly only stretch maybe two days in a week. The days I don't stretch I notice the tightness and increase in spasticity though.

My spasms are not painful, just annoying.

Tom

This post has been edited by mjtpopus: 12 July 2008 - 04:04 PM

[pikey]

My legs started to spasm quite soon after I became paralised, my legs would kick off at the slightest thing. It has been 28 years since they started and I am pleased to say they are a lot better now!

If and when my spasms start I know something is wrong ie a uti, injury or I need the loo. I have found the best thing for me is to sort out the immediate problem if that does not work I rub and streach out my legs, it helps to get them less sensitive and they carm down. I will take a some pain killers if that does not work.

Spasms are useful for me they help me transfer (when I spasm I am not carrying a dead weight) also as mentioned before I know somthing is wrong. One last thing they help me perform in bed. Enough said...

[Sorbut]

I started getting spasms 3-4 years post. At first it wasn't much but it kept getting worse. After a while I started taking Baclofen (40 mg a day). Then 80. Then 120 but it still leaves A LOT to be desired.
Through all these years I could always get away from the spasms by lying down. Then about a year ago I started getting them while laying down. AND THAT REALLY SUCKS!
I also used another drug called Zanaflex for 9-10 years. I then took myself off of it and realized the only thing it was doing was making me sleepy.
The best med I've found by far is marijuana. It's the only thing that keeps me half way sane these days. I don't know how things would be with only the pot and no Baclofen.

Although the spasms seem to not need a reason to happen they are very much brought on or increased by sitting. The more I sit the worse they are. That makes it impossible to work anymore. Also, the need to piss or crap. Also, an outside source like tight pants or something pressing on my foot or leg.

The best way for me to keep the spasms somewhat under control (besides the meds) is to keep my body moving. Doing things like working out at the gym, working in the garage or doing yard work. Running errands is another. Anything that makes me do a lot of transfers or has my body bending, leaning etc. Just not sitting still like I'm doing right now.

[Stickman]

Good God I thought i was the only one in the world with these violent spasms/tone. I feel for you all, they really suck. I used to be the most patient person i knew of, but nowadays i can have a very short fuse

[reaven85]

My bfs started about 2 weeks after the injury. He had a few small ones that Only I noticed during the 14 days at the hospital...But they really "kicked" in at the rehab. He gets them in his legs. Also his toes especially his big toe its always up? It points up? I dont know?

[1997androllin]

The best way I've found to eliminate the spasms is to stay stretched. When I wake up my legs have on occasion given me a good head knock. I remember when I first was injured in rehab grabbing my inner thigh to make my legs spasm thinking hopeful thoughts. I find the spasms somewhat useful in keeping muscle tone. I get them in my legs most but stomach and back as well. Have been knocked out of my chair by spasms in the past when I wasn't able to grab something. It seems a lot of people like to take medications but for me staying stretched and using electrical stimulation on my spasm prone areas lessens the spasms to a level I'm comfortable with.

[china]

My partner never seems to without them, he even find's it difficult to lay down in bed at night as from his stomach, right up to his chest goes realy tight and he can't breath, so he has to sit up again to take a breath, h ealso has the problem where his legs go up into the feotal position. I wait to see if i'm gonna get kicked out of bed each night. He takes 120mg of Baclofen and 125mg's of Dantroline.

[fatdave]

mine started 1 month post injury, in my feet. after time they moved up the legs into my thighs, now i have them just about everywhere.

I can go a week without one, then BAM!! a full day of spazms, so painful they make my whole body tighten, i hate them.

[copyright1986]

mine started in the hospital... and i thought that was a good sign but i got my hopes up and i still have not gained any feeling or movement since then and that was august of 2007... you can touch the hair on my stomach or legs and make me have stomach or back spasms my legs when they kick are strong enough to knock someones head off if it were there... lol

[purple_faeries]

mine started about a year after i became a para, they started off very small and have got worse and worse. I get them mostly in my legs, those are the worst, and they can be so violent that my legs move up and down on my bed so much it looks like i'm deliberately trying to kick the air above my legs. They get worse/start when my husband straightens/stretches my legs, and also if i'm having a bowel movement they can happen. I also have them in my stomach area, but not that often, and my arms can suddenly move out to the side like, i don't know lol. The ones in my arms i notice more when i am asleep cos they wake me up, and have also knocked lots of things off my bedside cabinet - not nice when they break something lmao.

I take 20mg baclofen twice a day (40mg a day total) but my GP said it could be increased up to 30mg twice a day (60mg total), and it has helped though not completely, i think i need it to be at least 60mg total.

It is sooooooooo annoying and really gets me down, and when they happen it makes me really really stressed, but my hubbie tries to calm me down lol.

[Angela250153]

My spasms started almost straight away and mostly affect my legs, especially the left. They are worse when I lie on my back and try to stretch my legs. I can stretch my right leg easy, but then the left goes into spasm. The left is painful when I stretch and it flies straight back. I recently had an arthroscopy done on my left knee and the pain made it almost impossible to stretch my leg as is was very painful.

I am on 50-70mg Baclofen a day and I find if I take one every few hours rather than 2 or 3 at once it keeps it fairly under control.

[the_walrus]

Mine started about 3 months after my injury, they had started in my feet but after 3 months they got really worst. I tried some meds that didnt work much and had some pretty bad side effects. I now use marijuana, stretching and strap my legs to my footrest.
As for when, my legs are like crazed puppies, they go off without any reason.

[ryan08/06/88]

I think my very first spasm was after I had come out of spinal shock...it was a twitching in my toe I think...and also I found when I touched my nuts my legs moved...

They never caused me any problem and had little affect on things for a while, I'd just get the odd little twitch...

Then I left hospital...

Firstly I fractured a toe and m leg wouldn't stop twitching but also because of that I couldn't stand, plus the fact as soon as I went home I neglected my bowel care and would leave it a week sometimes. The combination of all of these things meant 3 months later I wasn't flexible enough to stand...many more months of minimal stretching and standing meant I ended up pretty tight and spasmy...

Now it has been 3 years since I left hospital...I still don't stand regularly or stretch purely because I feel I'm at a stage where I need help to get them back to normal and then look after them from there, i.e get flexible enough to stand. I am seekin that help though...

My experiences are that I get the hopping up and down of my legs, legs fly out straight and come back up like i'm doing kung fu when I lie back...if I sit in the same position too long they get seriously annoying, my whole body tenses up like there is a tug of war going on between my upper and lower body and the angle between them is being closed. When in this state my feet tend to come off of the footplates really easily and go forward, legs crossover etc. That's probably the most annoying for me as it means having to let go of a wheel to either reposition my legs or straighten myself up which, in a busy place like London, is annoying.

My spasms are definitely worse when I need a s***, also after having dropped off the kids at the pool I get a really violent spasm sometimes. If I touch the area below my belly button at all I get violently thrown backwards, i never happens at any other time, only after having a dump...I think it's a bladder spasm? A bit random though...

I also get the fetal position thing. Initially when in bed my legs will spasm out straight and rest there but eventually they always fly up...I can feel the coming and almost control them, I think I feel te build up through my hips (although I am complete which makes it strange) and if I relax I can fell the pressure release and they don't move, but eventually I can't relax enough and they fly up.

That drives me mad, especially as I always end up sleeping in the weirdest positions, generally with a big twist somewhere...