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Willy.Fouts

Member
Joined
Nov 19, 2013
Messages
10
Reason
DX UMND/PLS
Diagnosis
08/2013
Country
US
State
CA
City
San Francisco
Does anybody else deal with constant cold feet?

I've been doing acupuncture around 1-2 times a week and that has helped with things such as my balance and back muscles. Has anybody else had any acupuncture, and if so how did that make them feel?

I'm also looking to try yoga and maybe even pilates, I know this won't fix the problem, but does anybody have any thoughts on these as well?

Thanks!
 
I have had a lot of acupuncture and swear by it. Although I do not have ALS or PLS I did have fasciculation in my lest arm from nerve impingement, and it was the only thing that helped. My husband has had it a couple of times and it was helpful in relieving his back pain, and decreasing spasms in his hips. It is too difficult for me to take him anymore as he is a full lift and the hoyer does not fit under their beds well.
I believe that yoga would be an excellent thing for you, for both the stretching and the meditation that is involved. I don't know if I would recommend pilates as it can be quite strenuous, but if you do try it have a one on one trainer.
 
Willy.Fouts -

>Does anybody else deal with constant cold feet?

yes, recently very noticeable and shivering cold at home in the living room.

>I've been doing acupuncture around 1-2 times a week and that has helped with things such as my balance and back muscles. Has anybody else had any acupuncture, and if so how did that make them feel?

I was trying it before my ALS diagnosis as we thought it was nerve conduction. All I got from it was a little discomfort and a nasty infection in a knuckle from one of the needles (they had to cut my wedding ring off).

>I'm also looking to try yoga and maybe even pilates

I think, if you can do them without straining muscles or falling, it should be good. I was going to try Yoga at our on campus fitness center and your note reminds me to revisit that idea while I can :).

Max
 
my feet get cold, but I live in Alaska where our inside temp is 67f degrees and most of the time I forget my slippers. They will get cold also if my circulation gets compromised. I do have a tendency to get cold hands as well. The past several years I have had issues of getting cold in general. I use to be able to tolerate cold to some extent (being in Alaska), however now if I even get a slight chill, I will shiver and my muscles will tighten to the point that I cannot move and on one occasion, I passed out from pain and my throat muscles clinching and cutting off circulation to my brain. Thus, I will never get in a cold car again.

So whether this answers your first question or not, that is my experience.

As for other treatments, do what is helpful for you to feel as relaxed as possible. As you said, they will not change things in the long run, but if they give you temporary relief without you needing to take medications and you can afford them, the all the best!

I use to find massages very relieving for me years ago. But there was only one masseuse that could do it right and turn me into a bowl full of jelly. He would use some ointment that would remove all the pain and he knew just the right amount of pressure to get a muscle that would be knotted to release. He has retired (and since passed away), and I have yet to find a replacement who used whatever technique he used. My husband can do some good, but he looses interest or gets tired. He is not a professional at it. Other masseuses I have tried usually end up making me feel tighter because they try to rush through and either barely touch me or kill me from doing it too hard. So I have given up on finding one. Got too expensive since no insurance would pay for it.

As for yoga, just be careful of not falling over from some of the positions. I have been unable to fix my balance at all. Mainly because as my muscles weakened over the years (very slowly) I would discover that one day I could do something, then the next day I would fall over doing the same movement and never gain it back. Or I would rip a tendon putting stress on a muscle that had seemed to get weak without me noticing. I use to do the Wii fit program with my daughter quite a few years back. Did all the yoga and loved the ski jump game. Then one day fell into the tv set because I suddenly discovered I could no longer lean forward with knees slightly bent and be up on the front portion of my feet, like you would when skiing. Had done it with some pain just the day before. Never could do it since. Of coarse now I cannot walk farther than a few yards at a time, so keep moving and doing what makes you comfortable in order to keep moving! Just be careful!
 
Roids

In the beginning stages of my onset, my first neurologist had me take steroids orally. This did not help me a whole a lot physically and did a lot more damage to me mentally.

I was wondering if anybody had any insight on taking steroids with the needle and syringe instead and if that had any positive affect in any way?
 
only good thing steroids are for is to treat severe inflammation. 1 of the many side effects of certain steroids can be muscle growth, however, if PLS is a dysfunction of neurons signals of the brain to the muscle, then I do not think that steroids will be of any use in the treatment of PLS. JMO.
 
My feet go the exact opposite direction. That may just be me, I have always had hot feet. :)
 
I was diagnosed June 2011 and my feet have been freezing for the past 18 months even at th height of summer. I also go to acupuncture twice a week, but it doesn't seem to help with my ice cub feet. I wear wool socks and slipper with faux fur liinig. Let us know if you find anything that works.
 
Re: Roids

Last time that I took steroids, I was awake for 2 days, depressed, I refused the pills last time, got a shot in the hip, it was even worse
 
I have cold feet and lower legs whenever I get cold. They can stay that way for several hours. It started with the feet but as the area of ALS involvement increased so did the cold. I also sometimes have burning in the feet when the legs are up. Think bed or in my big chair. Dr. says I just have to put up with it. Now the cold is affecting my fingers as the ALS is starting there as well.

I use leg warmers in the winter and keep the covers off my feet if they are burning. Hugs


A little cry is good to fill the cup of life back up. Life is Good. Choose happiness! :D
 
Gary's feet and legs get cold easily also. He recently started wearing knee high support stockings and that seems to help some. Also, getting his feet elevated a couple of times a day to stimulate circulation makes a difference too. Those Jobst stockings are really hard for me to get on his legs, but it is worth the effort when his legs are not popsicles at the end of the day.
 
My legs and feet get very cold. We have an electric mattress warmer that lays over the mattress and under the sheets and plugs in. When I crawl into bed at night the combination my wife's warm legs and the mattress warmer gets my legs and feet warm and comfy in about 1/2 hour.
 
Thank you all very much. I appreciate your help.

.... Stay Golden!
 
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