[Ironside]

I tend to get quite bad spasms in bed which sometimes result in my legs hanging out of bed, or kicking the quilt off. Because I live on my own, it can be quite troublesome sometimes. What I really need is some kind of restraint that can go over my legs and attached either side of the bed. Does anybody know of anything on the market that can be used? I used to use a sheet over my legs but my spasms strong enough to pull the sheet out.

[bigsmiles]

Well you took the words right out of my mouth as i was about to post this topic myself tonight. My boyfriend and i had this conversation only this afternoon, he asked me if i thought it safe to strap his legs down at night in bed as the spasms are so bad his legs go all over the place and his legs end up right up by his chest. Even in his chair during the day is bad as he is all hunched over to the right although he straps them down in his wheelchair ..any ideas?

[Ironside]

I have had a look on the Internet and unless I am not using the correct phrases, cannot find anything. I think it is going to be a case of having something personally made. I have got some straps that I used to use but they aren't much good because one of my legs I put a pillow under no so when I put the strap over and spasm, the strap ends up just under my belly, not much good.

I know exactly what I want. I need a strap that is slightly elasticated, or a little stretch. It needs to have a really strong Velcro at either end and the strap needs to be wider in the middle and be split into two halves. This way, if you have your leg up in bed, the strap can come over your knees and be either side of the knees so if you spasm, it doesn't end up when I just mentioned, around your belly. I am going to try and find some material and will probably go to some kind of haberdashery shop where they do sewing.

[In The Wind]

Hmm, just what exactly is your goal? To stay under the covers or to keep from kicking in general?

And I wonder if a little valium would help. It doesn’t sound very safe to strap yourself to the bed but if you are just trying to keep from kicking the blankets off of the bed or to stay under the blankets I would think about tying the sheets under the bed instead of tying down your legs. I understand what your going through, I used to constantly be kicking my legs out from under the blankets.

[Ironside]

I want to avoid taking any more drugs if they can. I don't think there's a problem with strapping legs down. What I have in mind is a very light stretchable material that will give if I do spasm, it will just stop my legs from flying all over the place.

[keeptrukin]

I have night spasms but not as bad as you guys seem to have them, I asked my doc if I should brace myself at night and I was told no. His thinking is you are more pron to injury if both your legs are tied together. If one leg wants to go one way and the other another it can't be helped. It was suggested to place pillows around my legs to prevent brushing from them hitting one another. He also suggested a rail for the side of my bed so I wouldn't throw myself out of bed. Each doc will have there ideas and preffrences so I would consult with them on what to do. A simple gait belt or tie down might do the trick. If its that bad maybe a restraint type tie down. But agian my doc advised agianst this. Hope this helps
KT

[Joed]

As I'm reading, it keeps coming to my mind that strapping your legs down at night might invite pressure sores, especially on the heel area. Even the slightest elasticity will apply pressure and impede circulation....I know that certain socks will make indentations in my lower leg.

But I can empathize with the problem and understand that a solution is needed...I just don't know if strapping down your legs would be the best idea.

What about making a loose noose out of a soft, terry cloth bathroom robe belt or something, and loosely tying it around your ankles, then secure that to the end of the bed, leaving a little slack. (?) It wouldn't completely immobilize your legs, but would keep them from thrashing off of the bed, etc.

[daniel562]

yeah my spams are real bad to when i get into bed
they get stift like a board but it feel good to me
but i think it cuz it sit for like 12hrs then get into bed
thats why

[Chilepepper]

Try a warm bath with Epson salt. You can buy the salt at any grocery store. Then when you get out of the tube, do a good stretch of your hips all the way down to your toes, just like they showed you in rehab. That should do the trick.

[bigsmiles]

Ironside, on Nov 2 2006, 07:30 PM, said:

I want to avoid taking any more drugs if they can. I don't think there's a problem with strapping legs down. What I have in mind is a very light stretchable material that will give if I do spasm, it will just stop my legs from flying all over the place.

Yes this would be ideal to keep the legs in position but i do understand that this may invite pressure sores don't want anymore of them. I imagine you have this problem during the day also? what really would help is excersise i.e physio but we are still waiting to hear when they can come out and visit. Do you have a bath? as this sounds like a good idea, my boyfriend only has a shower so no good for us

[In The Wind]

some standing and stretching would help alot

[DaveP]

How about something similar to a sleeping bag?

If your legs are within a "bag", they can't fly out of bed, then you only need to secure the bag/bedding to the bed. That way you don't need to be strapped down and your legs can have a bit of movement without the risk of falling out of bed.

[Ironside]

Some very interesting ideas. Firstly, I don't have a bath and I don't think I would want to take a bath every night before getting into bed, I have a shower every morning. A sleeping bag would probably work but where would my night bag go? I suppose you could cut a little hole in the side. Then you have got the problems of "do I keep my arms inside all night, or outside?" and since I use my computer in bed every night and also have to operate my possum, I want the option of being able to put my arms in and out if I want and I can do that with a quilt quite easily.

Standing is probably the best solution to reducing spasm. Unfortunately I don't have a standing frame any more. When I used to live at home with my parents, I used to stand a lot. When I started living on my own, I stop standing. I would dearly love to stand again because it does you the world of good, and when a cure comes along, and believe you me there will be one in the next 10 years, I want my legs to be quite strong so I am looking for one of these standing frames that has a special pulley that stands you up. They sell in the States but I haven't seen any other here.

Last night I attached a sheet over my legs and left it quite loose. We got it so I couldn't really pull it out from the sides and it worked a treat all night, I had a couple of quite bad spasms and my legs lifted but didn't fly all over the place. I put pillows under my legs to keep my heels from touching the bed because I have had problems in that area. I think I will try the sheet again tonight and see what happens but it looks like it may work. I have a couple of metal things on the side of my bed that we can wrap the sheet around a couple of times, seems to hold the sheet quite well, although you can get it out in a hurry if there was an emergency.

[itsjustme]

Night spasms.........

This is what I do. I sleep in my pressure relief boots and run a piece of Velcro through the heels essentially tying them together. It's my less paralyzed leg that jumps off of the bed so when it's lashed to the other one it stays on the bed and under the covers.

*Just another note on the subject.......why for those of us who struggle with spasms day and night.......are we not considering the Baclofen Pump? I had the trial done 3 weeks ago. I spent 8 wonderful hours without jerking and stiffening. We keep asking each other what to do when we have one answer right in front of us.

I'd just like to hear some paralyzed people with the pump talk about it and tell us more about their experiences before I make a decision but nobody's talking on this forum. I heard plenty from Medtronics and the surgeon.

[Ironside]

To be quite honest, the thought of having something going through my skin is not nice at all. I would have thought that it would just increase the chance of infection, especially if you had to go into hospital. My spasms aren't constant, I don't get them all time. They seem to come in bursts. I don't get many spasms during the day. When I do get one, it's normally quite intense on my feet will normally move back in the footplate which is really annoying. I'm trying to think of a way to stop my feet from dislodging on the footplate. I thought I'd come out the answer by putting very strong Velcro on the bottom of my shoe and the footplate. It does work to a certain extent but it's not foolproof. I need something that goes behind my feet. I do have a strap that stops my feet falling off the footplates. I take baclofen three times a day and I think it does help quite a lot.

Well, this sheet over my legs has worked fine for the last two nights so I think I will stick with it for the time being.

[Chilepepper]

Years ago when I used to play wheelchair basketball, sometimes we would have to go out of town for different Tournaments. There was this one guy I used to share hotel rooms with, and he used to have wicket spasms when getting out of his chair. I remember this one time when he was on the bed, he had to swing himself over to the other side of the bed to get something. When he swung his legs over, his legs did not bend, they were so stiff that his legs where still shaped like he was still in his wheelchair. He could not straighten his legs out because his muscles had become so tight that he could not even bent them. And the spasms he used to get were very bad. Anyway I asked him if he did any stretches and he said no…… After so many years have passed since last seeing him, god only knows how bad his spasms would be now…... So what I'm trying say here is that stretching is probably the best thing you can do for your spasms. Your spasms will only get worse because of lack of circulation and tightness of the muscles.

[Ironside]

When I was first in hospital there was this guy who came in, he was in the military in Northern Ireland and got shot right through the side by the IRA. I think I was about T6 T7, quite low down. This guy had the worst spasms I've ever seen. He would be wheeling his chair down the corridor and his spasms would actually be straightening his whole body out in the chair and see would have to use all the strength he had to stop himself from falling out of the chair. Quite horrendous, I hope they have done something to stop them now.

[bigsmiles]

Do you mind me asking what level are you Ironside?

[itsjustme]

Quote

wheeling his chair down the corridor and his spasms would actually be straightening his whole body out in the chair

Ironside, that's the way that my spasms are. Keeping my seatbelt very snug keeps my bottom in the seat of my chair and keeping my feet strapped to the footplate keeps me from slidding right out but rolling over any sort of bump, gravel, riding in the van stimulates my spasms and I am constantly repositioning myself in my chair because I can't keep the belt tight enough not to slide forward at all.

I have taken the max dose of oral Baclofen 40 mg. 4 times a day and the spasms just seem to override it so I just backed off to 20 mg. about 5 times a day since it didn't seem to make any difference anyway.

[Chilepepper]

Ironside, on Nov 5 2006, 09:04 AM, said:

When I was first in hospital there was this guy who came in, he was in the military in Northern Ireland and got shot right through the side by the IRA. I think I was about T6 T7, quite low down. This guy had the worst spasms I've ever seen. He would be wheeling his chair down the corridor and his spasms would actually be straightening his whole body out in the chair and see would have to use all the strength he had to stop himself from falling out of the chair. Quite horrendous, I hope they have done something to stop them now.

Ironside I know what you mean. I had a really close and dear friend who got into a motorcycle accident and became a T4 complete Para. He had the same spasms as you are talking about. These were complete body spasms. One minute your talking to him, the next minute he was on the floor. Because of the level of his fracture, he was paralyzed from the chest down, so getting back up into his chair from the floor by myself was impossible. At times he even had to get complete strangers to help him back into the chair.... It is very unfortunate but he passed away a few years back.

[In The Wind]

Ironside, on Nov 5 2006, 11:34 AM, said:

He would be wheeling his chair down the corridor and his spasms would actually be straightening his whole body out in the chair and see would have to use all the strength he had to stop himself from falling out of the chair

I call these “surfboard” spasms because they turn my body into a surfboard basically and if I don’t have something to hold onto I’ll just slide out on the floor. They also squeeze the air out of my lungs so they normally also have a grunt or 2 that goes along with them..

Again, ya gotta stay as stretched as possible and learn to recognize the triggers. At least for me there are body positions or movements that trigger different spasm patterns. My surfboard pattern is mostly triggered by extending my right leg and this normally happens when I am rotating out of my truck and into my wheelchair. You wouldn’t believe the stares I get when this one hits out in the parking lot….

Anyway, stay stretched out and learn what your triggers are… Standing and stretching have done more to help my spasms than the baclofen…

[itsjustme]

Hi In The Wind

Well, I can't stand at all but I understand the concept. When I was still in rehab they would strap me to a slant board and stand it up for weight bearing. After they took me off of it my spasms would be gone for about 30 minutes but there's no way for me to accomplish that in my daily routine and certainly not often enough to relieve the severity of my spasms. After 45 minutes of leg stretches at night my spasms and rigidity are relieved for about 10-15 minutes.

I'm beginning to think that the Baclofen Pump may be the only answer for me and as I said earlier it certainly was wonderful to sit totally at ease. I've had one response on the Baclofen Pump Board from a lady who has had a pump for several years and she says that it is one of the best decisions that she ever made so...........

[In The Wind]

The pump has been a godsend for many, that is true. If you can’t find anything that works for you in the way of exercising and stretching then the pump may be the way to go.

My only concern throughout this thread has been the thought of someone waking up with black legs that have been tied down all night long.

[russ1]

I get pretty bad spasms - currently on baclofen, dantrolene and neuontin to control them. I've considered a pump but don't want to do away with the spasms completely as they help with restricting muscle wastage and also because you can't scuba dive with a pump and I'd like to try that out in the future.

[gustifer]

I am a c6 7 quad and I have been injured for 12 years now. I used to have spasms that would throw me out of bed, my wheelchair, and put me on the floor in the shower several times. I've been on soma, amlatriptaline (sp), vallum, max baclofin, and others. My doctoor recommended smoking pot some 10 years ago. Since then I have only been taking 40mg baclofin 3x a day and a small hit before bed and in the morning before I strech is all it takes to keep them calm. No doubt, you need to stretch. I stretch every morning before I get up or do anything. Sometimes, I tense up during the day so a little hit then to keep my legs in my shoes at least. I have straps over my feet and my legs will still pull free sometimes. I got tired of all the drugs and being doped up, but I've found that pot really helps. Helps with appitite too. Of course, like any drug, too much deffinetly has its side effects.

[In The Wind]

“The best drug for spasms I can’t prescribe. It’s marijuana” is a direct quote from the medical director of the Shepherd Center. I’m surprised it hasn’t come up in this thread yet, but it’s true.

Pot will knock the spasms right out better than anything except opiates. No matter what you might think, if you are having problems with spasms, try marijuana. It does not have to be smoked, it can be prepared and eaten (it has to be cooked first) and it will absolutely help with spasms…

[itsjustme]

Yeah, the doctors have offered me medical marijuana but Lord have mercy! That's all I need on top of all of my other problems, something that will give me the munchies and contribute to what I already blame on too many "Senior Moments" to boot!