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anderkling

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Joined
Dec 1, 2014
Messages
273
Reason
PALS
Diagnosis
01/2015
Country
CA
State
B.C.
City
Surrey
I have severe edema in my left foot, due to muscle atrophy which prevents the blood from moving back to my heart. (My left foot is essentially paralyzed.) The blood and fluid pool in my foot, causing swelling and mottled skin, a reddish blue colour. The only relief I get is by elevating my foot above my head, which I am supposed to do as much as possible. In a sitting position, the swelling begins almost immediately and progresses within a short time to throbbing and then pain. Elevating my foot most of the day limits me tremendously on what I can do/the quality of my life. Do any other PALS experience this? Any suggestions? Thank-you.
- Charlene
 
Yes, this is making me crazy, too. It helps to lie in bed, foot elevated, and have someone massage toes foot calves moving blood up toward heart. More than once a day would be nice. I also think my time in pool helps.
 
I have severe edema in my left foot, due to muscle atrophy which prevents the blood from moving back to my heart. (My left foot is essentially paralyzed.) The blood and fluid pool in my foot, causing swelling and mottled skin, a reddish blue colour. The only relief I get is by elevating my foot above my head, which I am supposed to do as much as possible. In a sitting position, the swelling begins almost immediately and progresses within a short time to throbbing and then pain. Elevating my foot most of the day limits me tremendously on what I can do/the quality of my life. Do any other PALS experience this? Any suggestions? Thank-you.
- Charlene

Sorry you are struggling with this, hands and arms have completely atrophied for me but so far feet aren't too bad. Hopefully they can come up with something for you.
 
I have idiopathic edema. I was wondering if you've tried compression stockings?
 
Compression stockings help my husband. He sleeps with his feet elevated and tries to elevate them a couple of times during the day. Lymphatic drainage massage also helps the edema.
 
oh poop! I hope my lungs fail before this also. Sorry to all dealing with it.
 
The socks do help, but it's so hot here now I can't stand to wear them. And it's quite the challenge putting them on over my dead foot.
 
I get the heat issue...here we have humidity on top of the heat.

I have wrapped hubby's feet in ace bandages a few times. I had our PT show me how after reading about it online. You do have to be careful, and she advised rewrapping every 4 hours at least because you can never get the pressure as evenly distributed with wraps as you can with socks, but when stockings become impossible, it might be an option. Be sure to have a pro demonstrate.
 
Swelling is one of those really annoying problems that are so annoying because they require us to make inconvenient changes! Compression hose, proper seating, elevation of the foot of the bed, keeping your feet cool with a fan or even ice packs when outdoors are helpful. Massage is good but requires help. One good option is a Sequential Compression Device. You wear a compression boot (may be all in one for foot and calf or separate wraps) that sequentially inflates to move the blood and fluid upward. These are routinely used in hospitals to prevent blood clots in at risk patient and are now available for home used to control swelling. There are many leg massagers available but they don't do sequential upward pressure. Even so they may be helpful. It can be worn while you are sitting up which is great. You can have your doctor write a prescription for it or buy it yourself. There are usually some available on eBay as well.
Oh, forget about trying to control foot swelling with diuretics alone. They do remove fluid but at a cost of frequent urination and dehydration. They do nothing to correct the cause, poor circulation. Go to for important information on correct seating to reduce swelling. Go to ALS From Both Sides for important information on correct seating to reduce swelling.
 
How about one of those electrical stimulators that you always see advertised on Tv? Like Dr. Ho? you could put the probes on your foot and lower leg, and the contractions might help the blood flow? just a thought, might be worth a try
 
Thanks. Diane. So much use full info there
 
How about one of those electrical stimulators that you always see advertised on Tv? Like Dr. Ho? you could put the probes on your foot and lower leg, and the contractions might help the blood flow? just a thought, might be worth a try

It doesn't work for the same reason you cannot move an affected limb. Once the motor neurones fail, electric pulses don't work either. Tim sits with his feet up almost all the time, except in the van as there is not much room. On cool days we put compression stocking on.
 
Thanks, everyone! I will explore all options here. I cannot wear compression stockings because I broke my foot 4 weeks ago; so far, the x-ray indicates my foot is not healing. The edema was bad before the break, but now I have that on top of it. Oh, well, there are worse things than resting with your leg up! Extra time for thinking, praying, planning, reminiscing! We PALS are good at finding a silver lining...
- Charlene
 
Oh charlene...you are amazingly positive.
I have to admit I had visions of you being a contortionist with your leg in the air...silly me didn't think about lying down!
Will the break heal do they think?
God bless, Janelle x
 
Charlene...I'm sorry to read this post. I was hoping that your foot would heal quickly, easily, and totally. It seems like one issue snowballs into many issues all of the time with ALS. You're in my prayers and in my heart!
 
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