Leg Pain

em9988

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My mom was diagnosed last summer with it starting from her left toe into a drop foot and so on. Her legs are mostly gone and her hands are still kind of ok but very weak and she has trouble raising her arms. Her core is weak and her voice is weakening as well as her swallowing although she can still eat a normal diet of solid foods if she eats slowly.

But she randomly has immense almost unbearable pain underneath her left toe at random maybe a few times a day and some days not at all, her toe is where the ALS first started.

Her legs also have really bad pain if she sleeps for like an hour or two which always wakes her up from the pain.

Is this common? Is there any fixes for this?
 

affected

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Have you had any luck getting her into a hospital bed?
What we found worked best was daily massage, ROM and gentle stretching/movement.
But for us, really the hospital bed with alternating air mattress was critical for night comfort.
Some don't like the alternating mattress, but do like the memory foam.

We still found that when you can't really move, you need that regular attention to movement physio for joints and circulation. A good routine can be to do these at night when settling into bed.
 

lgelb

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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.
 

em9988

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is she supposed to wear the boot while she sleeps?

we have gotten a setup where she sleeps semi-upright, with her legs angled but her legs wake her up with pain regardless
 

lgelb

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Yes, while she sleeps. Not sure what you mean by semi-upright -- most PALS are more comfortable with head/legs at different angles, but not huge -- otherwise you are torquing the back. You want the knees to be supported by the bed, not floppy.
 

affected

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Oh yes heel protectors are another very good point. I have finally got my brother (totally different neurological condition) wearing a pair to bed at night and he can't believe the difference they are making for him.

But for PALS, the importance of a quality hospital bed just can't be overstated.

My Chris had a lot of pain as he was UMD and so had a lot of spasticity and joint tension as a result. He could not move at all in bed, and I would place him in bed using a hoist, then spend the time to position him 'exactly so' with the hospital bed functions and a range of pillows and foam wedges to get all 'just right'. He would then sleep all night. Before the hospital bed nights were a torture for us both.
 

Bestfriends14

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I second what Laurie said about the Stryker Prevalon boots. My husband had terrible leg pain at night before getting these boots. I would need to get up every 15 minutes to adjust his feet, stuff pillows around his legs and around his feet.

The Stryker boots, while expensive, have allowed both of us to sleep. When he goes to sleep, we put a pillow under his knees, close to his butt. We then put his boots on. That way, his legs, feet, and ankles are supported. He's had no pain since getting these boots; they have been a godsend.
 

em9988

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Have you had any luck getting her into a hospital bed?
What we found worked best was daily massage, ROM and gentle stretching/movement.
But for us, really the hospital bed with alternating air mattress was critical for night comfort.
Some don't like the alternating mattress, but do like the memory foam.

We still found that when you can't really move, you need that regular attention to movement physio for joints and circulation. A good routine can be to do these at night when settling into bed.

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.

I second what Laurie said about the Stryker Prevalon boots. My husband had terrible leg pain at night before getting these boots. I would need to get up every 15 minutes to adjust his feet, stuff pillows around his legs and around his feet.

The Stryker boots, while expensive, have allowed both of us to sleep. When he goes to sleep, we put a pillow under his knees, close to his butt. We then put his boots on. That way, his legs, feet, and ankles are supported. He's had no pain since getting these boots; they have been a godsend.

she still refuses a hospital bed, but I've purchased a bunch of foam pillows that can prop her body at like a 45 degree angle as well as add support under the knees

she has heel protectors but she says its too uncomfortable to sleep in

i guess it also doesnt help that shes lost alot of muscle mass but gained alot of fat, shes always been petite and hovers around 95-100 and now shes like over 110. so maybe the extra weight is weighting on her joints maybe?

anyone have experience with their ALS patient having immense pain underneath their pinky toe as random? and only on one side?
 

lgelb

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I'm sorry, but pillows are no substitute for a hospital bed. Angling bits here and there doesn't provide the same level of support when the body is flat overall. Extra weight can play a role, but it is doubtful you will be able to pinpoint and address the pain if you cannot support the feet more than they are now.

The heel protectors (are these the pressure boots?) should be comfortable and supportive. If they are not, it may be because her feet are being pressed too tightly against the bed or they are not the best type for her.
 

em9988

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I'm sorry, but pillows are no substitute for a hospital bed. Angling bits here and there doesn't provide the same level of support when the body is flat overall. Extra weight can play a role, but it is doubtful you will be able to pinpoint and address the pain if you cannot support the feet more than they are now.

The heel protectors (are these the pressure boots?) should be comfortable and supportive. If they are not, it may be because her feet are being pressed too tightly against the bed or they are not the best type for her.
I will continue to try to convince her, but i think shes still in that stage where she wants some normalcy.

she seems to be ok before she sleeps where we massage her and get her in a specific position but if she falls asleep, usually after an hour or so, her legs would just be immensely uncomfortable and thats where most of the need for adjustment comes in and they range from crossing her legs to other weird positions
 

Bestfriends14

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We have an adjustable bed with an mattress overlay, where the head and feet raise and the bed vibrates. This can be an option so that the bedroom looks less like a hospital room and more like a regular bedroom. An adjustable bed works for some PALS, like my hubby, and hospital beds work for others. I have heard of PALS absolutely loathing a hospital bed (like my hubby), so if your mum concedes to trying a hospital bed, I believe you can rent one for a trial period. As Laurie mentioned, pillows everywhere will only work for a limited time. As the disease progresses, and their breathing worsens, it gets too uncomfortable and frightening for a PALS to sleep flat on their back.
 

lgelb

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With no footboard or headboard, any hospital bed with linens on it just looks like a bed. We omitted those for that reason and lack of space.
 

KimT

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Are her toes contracted? Massage to her lower legs several times a day might help relieve some of the pain.

Regarding a hospital bed. It will be a game changer. I'm still able to move but my adjustable bed allows me to stay relatively comfortable. Mattresses are equally important.

If cramping is causing the pain gentle massage with pain relief cream on her feet might help. I use magnesium oil followed by a compounded pain medicine my ALS doctor prescribed.

I hope you can find a solution.
 

em9988

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We have an adjustable bed with an mattress overlay, where the head and feet raise and the bed vibrates. This can be an option so that the bedroom looks less like a hospital room and more like a regular bedroom. An adjustable bed works for some PALS, like my hubby, and hospital beds work for others. I have heard of PALS absolutely loathing a hospital bed (like my hubby), so if your mum concedes to trying a hospital bed, I believe you can rent one for a trial period. As Laurie mentioned, pillows everywhere will only work for a limited time. As the disease progresses, and their breathing worsens, it gets too uncomfortable and frightening for a PALS to sleep flat on their back.
shes still ok with lying flat or on side so that ok for now but i will definitely start looking into the adjustable bed. Does the vibrating bed really help?
With no footboard or headboard, any hospital bed with linens on it just looks like a bed. We omitted those for that reason and lack of space.
lack of space is definitely an issue, since we just hit the one year mark both my parents are still in the mindset of trying to keep as much normalcy as possible, its prob the reason she is so opposed to the hospital bed for now?
Are her toes contracted? Massage to her lower legs several times a day might help relieve some of the pain.

Regarding a hospital bed. It will be a game changer. I'm still able to move but my adjustable bed allows me to stay relatively comfortable. Mattresses are equally important.

If cramping is causing the pain gentle massage with pain relief cream on her feet might help. I use magnesium oil followed by a compounded pain medicine my ALS doctor prescribed.

I hope you can find a solution.
her toes are not contracted but if her legs are fully straight her foot does go into that full ballerina type point.

me and my father does massage her multiple times a day, but its only temporary relief.

I will definitely try the magnesium cream, will report back of the effectiveness
 

lgelb

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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.
 
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