Leg Pain

[KarstBoy]

Has anyone encountered bad leg pain while in bed? My PALS has been going through this. The pain seems to be increasing with time. When this all started, Tylenol would take care of it but it is practically useless now. I've also given her a muscle relaxer to no effect.
NOTE: All limbs are either fully or partially paralyzed.

 

[wishmobbing]

Does movement help? Passive range of motion exercises can be quite important to prevent pain. When he was pretty much completly paralyzed my PALS had physiotherapy four times a week. This was a great luxury (and it would have been even better to have those sessions each day) and one of the thing that really improved his quality of life.

The other thing that comes to mind is positioning. Each limb should be supported to distribute the weight evenly to protect the skin and everything.

An ergotherapist once very skillfully positioned my PALS on the side, using all the pillows he could find and various towls that he rolled up and placed in nooks and grannys. About the quarter our after he left my PALS asked to be positioned on his back again. This was like an unboxing video, haha, so much packing chips!

After that we ordered a dozen positioning pillows in 3 different sizes. They are filled with little "styrofoam" pearls and are very easy to use and push into the shape you need.

 

[KarstBoy]

Does movement help? Passive range of motion exercises can be quite important to prevent pain.

Doesn't help, already tried that.

The other thing that comes to mind is positioning. Each limb should be supported to distribute the weight evenly to protect the skin and everything.

Right now she is pretty restricted as to position due to really bad problems with mucus buildup in her throat. She now sleeps with her upper body at a 60 degree angle to horizontal. This seems to cut down on the to need for throat suctioning in the middle of the night. Doesn't eliminate it but definitely helps.

After that we ordered a dozen positioning pillows in 3 different sizes. They are filled with little "styrofoam" pearls and are very easy to use and push into the shape you need.

I'll have to check into these. Had never heard of them.

Thanks.

 

[lgelb]

Also consider a foam + Velcro belt to keep the hips aligned, and pressure boots for the heels, in addition to support under the knees.

 

[KimT]

According to Johns Hopkins, ALS can also cause sensory symptoms, including pain. I experience burning and my muscles ache. I can still move all my limbs but I go to sleep with ice boots on. Maybe massaging the legs would help. Some pain responds better to ice and some to heat. My back responds better to heat but my neck and legs respond better to cool.

I'm always adjusting my bed and I have to sleep with my left arm on a pillow. I also have a side positioning pillow that helps me stay off my left side.

 

[KarstBoy]

According to Johns Hopkins, ALS can also cause sensory symptoms, including pain. I experience burning and my muscles ache. I can still move all my limbs but I go to sleep with ice boots on. Maybe massaging the legs would help. Some pain responds better to ice and some to heat. My back responds better to heat but my neck and legs respond better to cool.

I'm always adjusting my bed and I have to sleep with my left arm on a pillow. I also have a side positioning pillow that helps me stay off my left side.

Thanks Kim. Sounds like the culprit. My pals also complained about her right arm being painful and I had to place a small pillow beneath it.

 

[affected]

The pain can also be quite separate from the ALS. I experience a lot of pain if I don't frequently reposition in bed.
Have you tried an alternating air mattress or do you have a memory foam overlay?
I also sleep with a couple of pillows to provide support to arms and knee joints for certain positions.
With my husband I invested in so many different types of pillows! Some would work really well for a while then go back into a cupboard and I would use a new combination of types successfully for a while.
Sometimes too, just the inability to make a tiny position adjustment can end up becoming painful.

 

[Dwest]

We use a similar unit to this one. My husband says it’s like an ongoing massage and it feels good.

 

[affected]

@Dwest do you use it when he is in bed?
When I was in the ICU earlier this year they put alternating compression pump on my legs and said some people don't like them. I found them wonderful!

 

[Dwest]

@affected, No in the afternoons when he’s in his lounge chair with his feet up. It is a bit of work to put them on, but he likes them.