Leg Pain

em9988

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The boots, tied/connected the right way, provide a counterpull to the ballerina point, to keep the toes pointing at the ceiling with the foot at a 90-degree angle to the leg.

Normalcy is getting a good night's sleep and not being in pain, you might note, more than what kind of bed you do it in.
yeah we have the boots but she says she cant sleep with them on her feet
 

Bestfriends14

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Yes, the vibrating bed is good feature.. My husband loves it and has it on and off throughout the night . The vibrate option encourages better circulation, as well.
 
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em9988

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I also realize something, during the day she can lie down and be fine but at night at the same spot and similar positions but her legs would hurt or both her a lot, any one know the reason for this
 

lgelb

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Could she be cold? And at night, she is in bed for longer. Also, you could try passive range of motion/massage just before bed.
 

em9988

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In addition to a hospital bed, where you can angle both the head and legs, she could probably benefit from Prevalon pressure boots ("heel protectors") that you can get on Amazon or elsewhere. We used a harder foam strip in the middle of each one to keep the foot from drooping, and also tied the two together with a loose sash to keep the feet in alignment with the hips. You can also use foam beneath the knees for more stability.

Could she be cold? And at night, she is in bed for longer. Also, you could try passive range of motion/massage just before bed.
it's definitely not the temperature, we don't even have the AC on and its summer here.

we do the motion massages before bed and we got that alternating pressure mattress along with the hospital bed, but nothing seems to work, we're all at our wit's end, her legs just keep hurting and bothering her at night, way more than during the day.

I can see my father health deteriorating and I'm sacrificing my sleep to help out even though I'm working full time.
 

affected

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what kind of position is she sleeping in?
 

em9988

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what kind of position is she sleeping in?
Usually starting on fully flat back then with bent legs then sides and constant readjustments side too side and sometimes she prefers legs crossed left over right then right over left
 

Bestfriends14

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That sounds exactly like my husband until we got the bed and mattress overlay. That's when he found comfort. He loathed the hospital bed with the alternating mattress as he found it incredibly uncomfortable.

Now, we have the temperpedic (ultra plush comfort), the overlay (specifically made for bedbound individuals), we put a pillow under his knees, and he wears the Stryker boots. He sleeps like a baby now, on his back, and says that he's never had a more comfortable sleep. I used to get up with him as often as every 15 minutes, but since getting all of the above, he sleeps 9-10 hours straight.

I hope you find something to make her comfortable. It's horrible when no one sleeps.
 
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affected

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The alternating mattress brings huge relief to some, and is hated by others, so it could be worth looking at changing it out.
 

em9988

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That sounds exactly like my husband until we got the bed and mattress overlay. That's when he found comfort. He loathed the hospital bed with the alternating mattress as he found it incredibly uncomfortable.

Now, we have the temperpedic (ultra plush comfort), the overlay (specifically made for bedbound individuals), we put a pillow under his knees, and he wears the Stryker boots. He sleeps like a baby now, on his back, and says that he's never had a more comfortable sleep. I used to get up with him as often as every 15 minutes, but since getting all of the above, he sleeps 9-10 hours straight.

I hope you find something to make her comfortable. It's horrible when no one sleeps.
what is this overlay?
The alternating mattress brings huge relief to some, and is hated by others, so it could be worth looking at changing it out.
we are currently using that one, is there alternatives?
 

lgelb

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There are many alternatives. You can use any foam overlay and/or foam mattress on a hospital bed. Some people like Tempurpedic, others use medical foam (a standard hospital bed mattress that bends with the bed and has a waterproof outer layer) + a 2-3" latex overlay or other foam. I personally believe that it's better to have layers that you can swap in and out unless you are very sure of the setup from the jump. We had a hospital mattress + a latex overlay.
 

Bestfriends14

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Hi Em,

We have Sleep on Latex, 3 inch, soft mattress topper. It's so comfortable that we ended up getting three for different beds so that wherever we go, my husband always has one on his bed. It's easy to transport, which I like. Our base is adjustable where the head and feet raise and lower.

The thing with a hospital bed mattress, is there's a misconception that every PALS will like it. It's a hospital mattress- why wouldn't they like it? Well, my husband has had ALS for years and been fairly immobile for a couple of years now. For him, laying on one of those mattreses year in and year out would have driven him crazy. Every PALS is different, which is why I'm a big proponent of renting a hospital bed set up first, and giving it a trial run before committing. It's an expensive mistake to make should your PALS detest it.

Our set up allowed for testing and had a money back guarantee, so we knew we were ok if he didnt like it. Mods, I hope these links are OK to post. If it's not, Em, I can PM you. Now, these products aren't inexpensive, but they are still a third of what a hospital bed set up costs. ( link removed commercial links not allowed but it was broken anyway -404 error)

The mattress is a Sapphire Canyon 16 inch Plus Pillow Top mattress-specifically made for folks in bed a lot.

Again, I hope you guys find a solution soon. No one is any good without sleep.
 
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KimT

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I use a medium latex mattress with a soft latex mattress overlay and a fairly thick mattress pad. My bed is adjustable but I sleep best flat with a medium pillow under my knees. I switch to my side if I wake up. I still have pain but I've tried many different setups but this one works best. I get around 7.5 hours of restful sleep per night but use the bed during the day to help my pain and watch TV.
 

em9988

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I use a medium latex mattress with a soft latex mattress overlay and a fairly thick mattress pad. My bed is adjustable but I sleep best flat with a medium pillow under my knees. I switch to my side if I wake up. I still have pain but I've tried many different setups but this one works best. I get around 7.5 hours of restful sleep per night but use the bed during the day to help my pain and watch TV.
is there a reason for the pain? is there anything else we can do during the day to minimize it at night?
 

lgelb

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Yes, do passive range of motion exercises with her. Have her doc write an order for a home health PT to do an evaluation and show you how. This is reimbursable by Medicare if written correctly.
 
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