I cant get comfortable

[Sammy88]

Hi, I'm really struggling with sleeping, not cos I can't sleep but because of the muscle wastage. It's like a bomb has gone off and left many craters in my legs/ bottom.

It feels so sore. I've bought memory foam toppers. New adjustable bed but nothing works. I sleep in my powerchair with a pillow on the window sill, I lean forward. I would sleep in my riser recliner armchair but my feet hang off making my ankles swell. Any ideas ?

 

[Clearwater AL]

I can’t get comfortable either
Dealing with everything ALS related I lost so much use of my legs
being in that bed for 5 days I could not get out of set them back.

No matter how I adjust my expensive office chair, the wheel
chair and my bed, pillows, raised, flat… I toss and turn, my feet
are now bothering me. No pain, prickly just a sense of numb like
they are now not getting enough blood.

The shots in the back of my head worked for the headaches but
the ringing in my ears is so annoying, have an ENT appointment
October first. People have noticed my voice has changed.

I am so irritable (ears ringing. an hour or two of sleep here and there)
I try not to take it out on Ann and others.

I would love to go to bed at 8 o’clock and not wake up til 8 AM.

I’m not going to give up but… sometimes I get tired of all this!
I think of those further into this disease than me.

I hope my next appointment Wednesday I can get some new
meds.

 

[lgelb]

Latex foam is more supportive than synthetic memory foam.

Does the new bed tilt and recline, not just feet/head/bed up/down? Support for your hips that way is really key to not putting so much pressure on your backside. You can also try a foam belt around your hips and pressure boots for your feet, again to redistribute the pressure.

As to the recliner, could you trade it in for one that has an extended foot support? They are available even for tall people. You could also then vary your foot position throughout the day. People using wheelchairs can likewise vary their foot/body position by raising the footrests and using tilt/recline. It does help.

The pillow/windowsill is really not safe. What if you lurched in sleep and injured your neck?

Al, have you tried therapeutic massage for your legs/feet? An MT can come to the house. Often insurance will pay if your doc orders it and especially if a PT does it. Post-hospital stay changes are very common even for the healthy.

What about a flexible, rollable footrest for your desk?

 

[Sammy88]

Clearwater AL , I can so relate to not having enough blood going to my feet. Often my feet are purple. My voice is weak to. My swallowing is really loud.

Igelb, I'm going to look up latex foam thanks . The trouble with memory foam is you sink into it, then I have a panic attack due to being stuck unable to turn over.

In the uk there seems to be no armchairs I can find with extended foot support . Yes I know it's quite dangerous to sleep in a powerchair leaning forward with a pillow but I'm so desperate to have some sleep.

 

[Clearwater AL]

Laurie, I do not have an adjustable bed... yet. Didn't because the
head of the bed is on 6' risers and a foam wedge until this recent set back

I guess I need to add to this from what the doctor told me.

I have dropped from a muscular 230 pounds now down to
160 pounds. I have no buttocks/hips anymore, The muscles that
support my lower spine and legs have atrophied. My shoulders
are just bone both sides. I do have a new foam mattress that
is 2 and half inches thick. It helps.

 

[lisa g]

I to am finding that it's harder to get comfortable. I used to look forward to going to bed at night, it allowed me to forget about this disease for a couple of hours. Now I dread it because it's harder to get comfortable and I'm waking up in pain. My shoulders are sitting forward in the sockets and PT hasn't helped. My left hip is also painful. I got a hospital bed with gel overlay but that's even more uncomfortable so I've gone back to sleeping on my select comfort mattress although it's not adjustable. I have to sleep on my side with a pillow to raise one of my shoulders for support. We're considering purchasing a new mattress that would be adjustable.

 

[KimT]

Amazon has foot braces (soft and hard) that will keep your feet pointed up when you're in your riser. As Laurie says, they now make risers what are designed for tall people and would be more suitable for someone with ALS who wants to sleep in their chair. My riser (lift chair) is the most comfortable piece of furniture I have and it's the second one I bought. If I had it to do over I would get the extra tall. It's fine for now but I can see it being a problem in the future.

I have an adjustable bed. It's not a hospital bed but it has a rubber mattress, a latex topper and a faux wool mattress pad. Along with some strategically placed pillows, I can get somewhat comfortable. My main issues are neck, left hip, and right knee. I also have severe neuropathy in the bottom of my left foot so I use ice socks just about all the time unless I'm out or not sitting/lying down.

I've noticed that the more muscle I lose, the harder it is to get comfortable.

 

[Sammy88]

Kim I feel exactly the same, once the muscle wastage starts out goes being comfortable. I'm sleeping in my riser chair lately even tho my feet hang off. The swelling is quite bad now.

I might buy another riser armchair for upstairs because my chihuahua snores so loudly . There's always something to keep me awake lol.