Old 04-09-2011, 08:01 PM #1 (permalink)
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Default Has ANYBODY ever had this happen?

This stinking disease is so challenging. The hospice nurse told me to elevate my feet becuz they're swollen. So I just took a nap and elevated the feet the whole time. When I put the bed back both my thighs got real heavy and wouldn't move. I'm not doing that again. Have any of you experienced anything like this? I guess it's the blood and fluid draining back down. Hospice nurses are great but they're not ALS experts. Gotta use your head with this crap.
Thanks for any clue.
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Old 04-09-2011, 08:11 PM #2 (permalink)
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Default Re: Has ANYBODY ever had this happen?

Hi there Carol. We got that advice too. I don't know about the heavy thigh feeling after elevation cause my pals can't communicate specifics but I do know that elevating the bottom part of the bed was just too uncomfortable for her. Cushions were a better option but best of all was a bodyfoam/tempura type cushion which moulds to the foot shape. Even with that she can only manage it for short bursts. Of course the downside of cushions is needing someone to place it if you can't yourself. I believe there are also tablets which can take down the swelling ( but increase need to pass water) but we haven't tried them. Hope your legs feel your own again soon.
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Old 04-09-2011, 08:14 PM #3 (permalink)
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Default Re: Has ANYBODY ever had this happen?

I never had that reaction to elevating my legs...but then, they are totally paralyzed, come to think of it. Still, it didn't happen early on, either. I will say that I get some very odd sensations--sensory feelings, mostly in my feet. They feel, hanging off a pillow totally uncovered, as though they're in tight, pressure filled boots. After a while, they're fine. In the morning I'm usually incredibly comfortable--it makes no sense as I don't move at all during the night.

Massage is said to really help, pulling the fluid up from the highest area of swelling.
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Old 04-09-2011, 08:20 PM #4 (permalink)
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Default Re: Has ANYBODY ever had this happen?

Hi Ann, I knew you'd know about elevating feet. thing is the feet aren't hanging--the whole bottom of the bed rises so the feet are supported. They feel dandy during the nap--it's afterward. And my usual Vicodin doesn't do squat. I have a diuretic I can take, but that makes my breathing worse. I don't think the feet are that bad. The immobile thighs are a worse problem!
Thanks for thinking with me.
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Old 04-09-2011, 08:27 PM #5 (permalink)
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Default Re: Has ANYBODY ever had this happen?

Another thing to try instead of elevation is compression stockings. For me they stop the swelling, keep my feet warm and make it easier to move my legs in bed.
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Old 04-09-2011, 08:33 PM #6 (permalink)
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Default Re: Has ANYBODY ever had this happen?

Good idea,Jeff. I'll ask my nurse about stockings on Monday.
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Old 04-09-2011, 08:34 PM #7 (permalink)
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Default Re: Has ANYBODY ever had this happen?

Jeff's solution was good for me as long as my hands could pull the TEDS up. Carol, if you or someone can get compression stockings on, give it a try.

So sorry the thigh misery was so bad. I imagine that was scary.
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Old 04-09-2011, 08:37 PM #8 (permalink)
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Default Re: Has ANYBODY ever had this happen?

Well, I guess my aide could help me, but my arms and hands are the very last things to go. I can't lean over and put socks on though so I'd need help. I bet we could get the stockings on. I just wonder why the nurses didn't think of it already. They're always ready to suggest a pill as the solution.
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Old 04-09-2011, 08:49 PM #9 (permalink)
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Default Re: Has ANYBODY ever had this happen?

It's true they're hard to get on. My wife has to put them on for me.
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Old 04-09-2011, 11:41 PM #10 (permalink)
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Default Re: Has ANYBODY ever had this happen?

Hi my husband has swelling of the feet. The skin gets tight and he has terrible burning pain. What we try and do everyday is elevate the feet-lower leg and do a type of foot rub where I get some moisturising cream and push, rub my hands up his leg from the ankle to the knee for about 5-10 minutes. Then I rub from the toes up to the ankle for another 5-10 minutes. Hard to describe. We have found that if it is done regularly it helps with the swelling. I also do some ligament stretches as well.

Thanks

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Old 04-10-2011, 07:53 AM #11 (permalink)
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Default Re: Has ANYBODY ever had this happen?

Chris, you are a wonderful wife and caregiver!
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Old 04-10-2011, 10:16 AM #12 (permalink)
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Default Re: Has ANYBODY ever had this happen?

Hi Ann your kind words have mean't alot to me tonight. The last few weeks have not been good but I suppose we are in the same boat as everyone. One notable occasion was the Div 2 nurse we hired for few hours a couple of times a week who left after two shifts because she was "too uncomfortable" with Shane's eating process. Because he is on the BiPAP full time, with food we rip off the mask, he eats a few bites and then we quickly reapply. The other day I did the mask and all I asked her to do was put the toast to his mouth so he could eat it. She didn't like the way we crammed it into his mouth. Hey that is the only way he can eat-what should he do starve?Oh by the way the deck outside our bedroom is finished finally. Now all I need to get is the chair so he can go outside. I am having reps come out next week. One is a manual tilt n space wheelchair which apparantly can be modified and the other is called a Meuris chair which is a big comfy memory foam etc chair which is on wheels and is standards tested to go into vehicles. Would be good if it works out.
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Old 04-10-2011, 11:19 AM #13 (permalink)
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Default Re: Has ANYBODY ever had this happen?

I would advise making sure the ALS is causing the problem, too. Swelling in legs and feet can mean other things going on. Anything from kidneys to heart can cause it. Once it is confirmed it is nothing major, the TED hose may help, bot Ted hose are used to prevent blood clots. Feel netter
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Old 04-12-2011, 03:39 PM #14 (permalink)
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Default Re: Has ANYBODY ever had this happen?

No worries on that score, Notme, for sure it's ALS that's causing the swelling in my feet. I don't have any other health issues. Just ALS and that's plenty.
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