Turning in bed

[Alex123]

Although I can still move my arms and legs, my neck is very weak and the only way I have found to turn in bed is to sit first and then to lie down on the other side.
The reason I have to sit is that when you turn, usually (without realizing it) you lift your body and head a little. Without that small lifting you would just roll and end up some distance from your normal position. I guess if I had the whole queen size bed for myself I could do that. But probably I would need longer pillows (I also use a wedge pillow to avoid reflux).
I sleep on my side to avoid aspiration of mucus/saliva. The arm that faces down hurts a little and something strange is that even my ear hurts after sleeping on one side for some time. That makes me have to switch form one side to the other.
I can understand that if the muscles of my arms are dying, then there is less protection for the nerves and that can be the reason it hurts. But we humans don't have any muscles in our ears. Well, that is a mystery on it's own. But I was wondering what experiences other pals have had when they have encountered increased difficulty turning in bed. I'll appreciate your sharing your experiences respect to this.

 

[Fpm3]

My neck is good but legs and right arm are weak and for me sometimes it's easier to sit up and then switch positions as well. I've always slept on my stomach so learning to sleep on my back or side has totally sucked. I also have saliva build-up which usually wakes me so I can.swallow and / or clear my throat. I'm still experimenting with pillows / wedges to find a comfortable position to sleep for more than an hour. I have had the ear pain too - proably due to pressure on nerves in the ear.

 

[lgelb]

It's usually more not being able to do little positioning shifts more than dying nerves per se, for arms and ears and such. Ears only have cartilage and get crimped easily. The nerves themselves don't hurt when dying, things just don't move any more. You may be thinking of MS or SCI, where there is pain because the sensory nerves are damaged as well. Not so in ALS.

Larry could only sleep on his back, but when he became immobile, we used an Isotonic shoulder pillow to protect ears/shoulders, Comfortbag heating pads on both sides of his head to keep his neck/head straight on both axes, and foam under every part of his arms/elbows. A foam belt around his lower legs, pressure boots that were tied together to keep his feet straight, etc. And of course a good foam overlay but a lot of people use air as things progress. We couldn't do that as he needed stability for pre-existing spine/joint issues and subluxated shoulders.

So as things change, experiment to see what needs to be absolutely stable and what needs to move in what direction by how much, when you still can.

 

[Alex123]

Something I currently do when my ear hurts is to put my hand around the ear (not on top of it) with my thumb behind and the other fingers in the front.
I have a wedge pillow and two regular pillows on top of that. One in the upper part of the wedge and the other one below that. The upper pillow I use to rest my head and the lower one for my torso. I leave a small gap between both pillows. In that gap I put my shoulder and also my arm. It has more or less worked so far, but I don't know for how long this solution will work.

 

[Alex123]

Laurie, I will have to Google those things you mention as I has never heard about them. Maybe those are the things that I will need.

 

[Diane H]

Hi Alex,
I had problems with my ear getting folded and causing severe pain. I like to sleep on my side and that made it worse. Sometimes in the morning there was a red crease or even a little blood where it had been folded. I tried a softer pillow, feather pillow, a contoured memory foam pillow and even a Buckwheat pillow. ("But wait, there's more! Call now and get a second pillow for free!") I tried using a square of memory foam with a cutout in the center for my ear, similar to you cupping your hand around your ear. That did help but the bare memory foam made my cheek hot and itchy and often took a couple of wake ups for my husband to get my ear positioned in the donut hole just right. Somewhere along the line I discovered that my contoured memory foam pillow was all that I needed if I moved it over so that my head was nearer the edge rather than in the center where it sunk in deeper! That and smoothing out the pillow case to get rid of any wrinkles under my ear has stopped the problem. It sounds too simple to be the solution and maybe it won't work for any other crumpled ear people, but I thought I would pass it on.

 

[Alex123]

Laurie: I looked at the shoulder pillows and it looks like the idea is similar to what I am doing with the two pillows. But if at some point it gets hard to put the pillows in the right position, I may consider buying one of those.
Fpm3: Thanks for sharing your experience. It looks like Diane has given us some ideas with respect to the ear problem.
Dianne: Thanks for your tips. I guess it takes some experimenting to find the right solution. For the moment, my ear has gotten folded a couple times, but most of the time is not a big problem. I just wake up and there is a slight pain in the year. I do a little adjustment or turn on the other side (sitting first as I described before) and the pain goes away.

 

[Alex123]

The nerves themselves don't hurt when dying, things just don't move any more. You may be thinking of MS or SCI, where there is pain because the sensory nerves are damaged as well. Not so in ALS.

I don't know Laurie if when you said this you were talking to Fpm3 or to me.
But anyway, I don't think anybody suggested sensory nerve damage as the cause of the pain. What I suggested is that after the muscles die, the sensory nerves and their terminals are less protected and one can feel pain due to pressure or even numbness on the arm that is placed under the body. I just wanted to clarify this because maybe I didn't explain well what I was thinking.

 

[affected]

I have to second what Diane said.
I don't have ALS but have had trouble with a sore ear from sleeping on it, and it's always been positional. I have a good memory foam pillow too, and if I position it correctly (I use it for neck) then my ear is fine, if not I get your pain!

Chris began to get a lot of shoulder pain in bed fairly early in, as soon as he started to get a lot of muscle wastage. It was the joints that got to him in bed as they were tightening up and just had no supportive mass anymore.

The combination of hospital bed and air mattress, sleeping partially upright on his back was what he needed to begin to sleep well again, but he fought trying it all out for a long time.

 

[lgelb]

Understood, Alex. There are two phenomena at play -- you're right -- the loss of cushioning and the loss of movement that ordinarily reduces positional pain.

 

[KimT]

I don't know Laurie if when you said this you were talking to Fpm3 or to me.
But anyway, I don't think anybody suggested sensory nerve damage as the cause of the pain. What I suggested is that after the muscles die, the sensory nerves and their terminals are less protected and one can feel pain due to pressure or even numbness on the arm that is placed under the body. I just wanted to clarify this because maybe I didn't explain well what I was thinking.

I'm experiencing sciatica pain, numbness, and tingling from my glutes to my feet because I've lost muscle in my glutes. It feels like I'm sitting on a rock. I do have a cushion and padded chairs but I feel lots of sensory sensations from the muscle wasting.

 

[gooseberry]

Kim, we had to buy a new bed because things didnt fit with the wheelchair and equipment. We invested in an expensive mattress only to get it home and have steve declare he needs more padding. So I got a 4 in gel/memory foam matteess topper on the pt's recommendations. It is pretty good since Steve has to sit up to rollover his his core muscles are getting weak He mostly sleeps on his back now and left side.

 

[Alex123]

I wonder what I am going to do when I can't turn myself anymore. I usually turn like 4 or 5 times each night. As I mentioned before I am now sitting before turning, but when I can't sit by myself anymore I guess I'll have to get wider pillows and just roll. When even that becomes hard, my wife could help me roll, but I would have to wake her up many times during the night. I also have a twin size adjustable bed that is sitting in the garage and I haven't used yet. I wonder if that would help or not. If I used that bed, my wife would have to get up and walk towards my bed every time I need to turn. So I don't know how or if I'll be able to solve this problem.

 

[Ells]

Hi Alex,

FWIW, I haven't been able to turn in bed for 7 years. I sleep well and comfortably on my back, on an alternating air mattress, set to my weight (important!). It lays on top of the normal mattress on my side of our king size bed.

There are fancy gizmos available which can change your sleeping angles, guess I'm lucky I don't need to buy one.

Ells.

 

[Alex123]

Hi Ells, yes I think you are lucky you can sleep on your back. It also looks like your ALS is progressing slowly. I don't think I can sleep on my back because I can aspire saliva or mucus that gathers in my throat. If I could sleep on my back it would be much better because it would not make my arms go numb and my shoulders hurt.
Thanks for your input.