I sleep on my back (can't sleep on front or side).
Over the years I've had problems with keeping my legs straight in bed due to spasms.
Currently I use a mixture of pillows, protective heel boots and sliding sheets (so when my legs spasm up they go back to the straight position once the muscles relax). This is the best solution I have found so far but I still end up waking up most nights with my legs in an uncomfortable position (sometimes because the sliding sheets have been kicked off even though they are tucked in).
I am not looking to change my medication and I have a stretching routine. my spasms aren't really that bad- they just cause me to get in an uncomfortable position.
I'm looking for some kind of physical solution beyond pillows and sliding sheets. I think I remember seeing on another site someone had made a pulley type system to elevate the feet slightly.
I'm so glad you've asked this question! I got kicked out of physical therapy years ago (thanks, Medicare!), and have had major problems straightening my legs ever since. Basically, they don't straighten anymore. I sleep in my side, legs bent in fetal position, and when not in my chair, I sit with them crossed because..well, I don't really have much choice. I hope you get some genius responses to this post! 😊 There are probably many of us who need some tips!
Hi lessismore. This is one of those times when knowing your injury date and injury level could "help us, help you". But I'll blunder on in.
I'm like you about not wanting to "medicate" for spasticity problems. Only recently, after I'd been paralyzed for two and a half years, I figured out how to do something about exactly what you've asked. And here's my discovery...
I realized that. If I'm lying on my back, and my knee is bent (sticking up in the air), that (with my hands) I can grab the mattress and scoot/push myself just a few inches "up" toward the head of the bed, that that triggers a reflex and my leg will go into a spasm that straightens it out! And then, if I'm too far up in the bed, I can just reverse the actiin and push myself back fown a little. But the leg will stay straight. I haven't told this to anyone online before. Please let me know if you try it and it works for you?
P. S. I only have one leg, as the other one was amputated at the moment of impact when the car hit me.
Hi hybro. I only saw your post after posting mine.
I'm unable to do your method but I've tried triggering a spasm to straighten my leg (digging finger nails into skin below injury etc) but although I spasm never works-usually makes it worse.
Sorry about that, lessismore. Is there any spot/situation where you find your legs straightening out on their own? I realized that in my case, every time I was transfering to/from my wheelchair, my leg would straighten out. That's how I figured out how to use that reaction to my advantage.
i was thinking something like below but with the elavation angle set at just above the horizontal and some kind of elasticity in the frame/pulleys to allow the leg to tense up/spasm and then return to position without breaking the frame setup or my leg/knee!
Yes. Before coming up with my trick, I'd thought, in desperation, of making something like that photo you found. And I wondered the same thing about how my spasticity would react to it. My spasticity has its own timeframe and it doesn't like to be rushed.
Another suggestion is to use leg weights. It is a trial and error method to determine how much weight you will need to straighten out your knees. You must put something cushy between your skin and the leg weights like sheepskin. However, do not sleep all night in them because you could cut off circulation.
Transfer to bed a couple of hours before you actually sleep and put the leg weights on then. In the beginning, use a small amount of weight and then amp up until you can stretch out your contractures. It will not happen immediately so be patient and give it time.
However, if your contractures are really severe, you can try botox injections or release your tendons surgically. It just depends on what your doctor recommends.
When I was married, I used my husband as my leg weights as he would just lay across them while we watch the telly together.
I'm unable to do your method but I've tried triggering a spasm to straighten my leg (digging finger nails into skin below injury etc) but although I spasm never works-usually makes it worse. Good suggestion though thanks.
Inspiration comes and goes but when it arrives, oh how I cherish it.
Great thread! I encounter this exact same issue and find it to be very annoying. I go to bed with straight legs only to later wake up and find out that they've spasmed into some weird position. Sometimes the spasms are so bad that they cause my legs to tug on the night bag tubing which sometimes pulls my condom catheter right off. I've woken up to mangled legs and a wet bed many times because of that.
I too don't like to take meds for spasm and have never taken meds for spasms. I don't plan on taking them either. What I've found is that not putting a pillow under my feet at night (to off load my heels) helps my legs straighten themselves back out. Sometimes I use a wide pillow that's not as bulky to raise my legs and I find that that works better. Also, I've found that using a big heavy blanket help because I guess it weighs my legs down. I know califanna suggested leg weights which sounds like a great idea but you got to be careful because it could affect circulation or cause sores from being there the whole night.
Since your legs bend at the knee, it'd be more effective to prevent your knees from bending than to prevent your feet from moving. I have had nights where I put my over-the-bed table over my knees (hovering above the knees, not directly on them) and that worked great with preventing the legs from moving around. Only downside to that method is that sometimes the bang of your knees against the tables can wake you (and maybe others) up. If you have a thick blanket or padding under the table to use as protection, it should be fine!
DJ, I don't want to derail this topic--because, yes, it's a great Thread--but I want to ask you a detail about your last post. Do you have neuropathy? (nerve pain, i.e., burning sensation) I ask because I didn't have it for, at least, the first few days after I'd been moved to a normal hospital room from the Intensive Care Unit. I had 'clonus'...my left stump would kick repeatedly. I don't know when the doctor started giving me Baclofen. I just took whatever pills that they handed me. But I definitely remember the day that I woke up with neuropathy. The burning was only in my feet. By the next day, the neuropathic burning had moved up into my calves. And by the third day, the burning was all the way up into my hips and tummy. Baclofen continued on my schedule. It kept being handed me in the little plastic cup, along with the cup of water. Dutifully, I 'took my medicine'. Not until about 10 months after the accident did I look up Baclofen on the internet. That's when I found out that it causes nerve damage. It actually impedes any possible nerve growth and improvement of the damaged spinal cord. It may also cause damage to the brain, since there are nerves there, too! I quit taking it, but the neuropathy, of course, continues. So, I'm left wondering whether I might have been spared this terrible, apparently permanent, neuropathy if I hadn't been given Baclofen...back when I was too incapacitated to question what I was being given.
So, back to this very interesting Thread on how to get our legs straightened out in bed. Please continue folks.
Looking at this from a different angle (no pun intended ... OK .. Pun intended!!) www.cyclonemobility.com/f.e.s/what-is-fes Have you ever had FES therapy? This is a great way to deal with spasm as well as many other health issues. Are you English? American? Or .... OK, OK, another useful thing to know as the possibilities and resources for different parts of the world can be advised on. I'm desperately trying to get a FRS bike at the moment!!!
thanks vintage, I will stop taking baclofen immediately. it doesn't help much with regard to the spasticity and since it impedes nerve growth, no need for it.
Sshouston...my sentiments exactly. I'd always been careful about staying away from 'medicine', but, you know...a car hits you and you wake up paralyzed...and I thought, "I'm out of my league now. I have to let the 'experts' handle this." Now I wonder how many little fibers of my 'incomplete' might have found their way back together, had it not been for the Baclofen.
DJ, I don't want to derail this topic--because, yes, it's a great Thread--but I want to ask you a detail about your last post. Do you have neuropathy? (nerve pain, i.e., burning sensation) I ask because I didn't have it for, at least, the first few days after I'd been moved to a normal hospital room from the Intensive Care Unit. I had 'clonus'...my left stump would kick repeatedly. I don't know when the doctor started giving me Baclofen. I just took whatever pills that they handed me. But I definitely remember the day that I woke up with neuropathy. The burning was only in my feet. By the next day, the neuropathic burning had moved up into my calves. And by the third day, the burning was all the way up into my hips and tummy. Baclofen continued on my schedule. It kept being handed me in the little plastic cup, along with the cup of water. Dutifully, I 'took my medicine'. Not until about 10 months after the accident did I look up Baclofen on the internet. That's when I found out that it causes nerve damage. It actually impedes any possible nerve growth and improvement of the damaged spinal cord. It may also cause damage to the brain, since there are nerves there, too! I quit taking it, but the neuropathy, of course, continues. So, I'm left wondering whether I might have been spared this terrible, apparently permanent, neuropathy if I hadn't been given Baclofen...back when I was too incapacitated to question what I was being given.
So, back to this very interesting Thread on how to get our legs straightened out in bed. Please continue folks.
Very interesting. I didn't know that Baclofen had such serious effects! I guess I'm lucky enough that I never have nerve pain. Sometimes my toes feel like they're burning but only when I think about it, like now lol. I've never taken Baclofen in my life. I also get clonus. I decided not to take any meds for my spasms because I didn't want my muscles to atrophy completely.