Status
Not open for further replies.

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!
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
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.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
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
 

AKmom

Senior member
Joined
Jun 2, 2010
Messages
606
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
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!
 

Willy.Fouts

Member
Joined
Nov 19, 2013
Messages
10
Reason
DX UMND/PLS
Diagnosis
08/2013
Country
US
State
CA
City
San Francisco
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?
 

AKmom

Senior member
Joined
Jun 2, 2010
Messages
606
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
City
Wasilla
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.
 

AfraidButNotAlone

Senior member
Joined
Jul 27, 2013
Messages
533
Reason
PALS
Diagnosis
07/2013
Country
US
State
GA
City
Atlanta
My feet go the exact opposite direction. That may just be me, I have always had hot feet. :)
 

Al fox

Active member
Joined
Aug 11, 2012
Messages
35
Reason
PALS
Diagnosis
06/2011
Country
Cad
State
Ontario
City
Toronto
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.
 

Janie H

Senior member
Joined
Jun 23, 2013
Messages
714
Reason
PALS
Diagnosis
06/2013
Country
US
State
South Carolina
City
Rock Hill
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
 

Flyby

Active member
Joined
Jul 2, 2012
Messages
39
Reason
PALS
Diagnosis
10/2012
Country
CA
State
British Columbia
City
Nanaimo
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
 

AKjo

Distinguished member
Joined
Nov 3, 2010
Messages
380
Reason
Lost a loved one
Diagnosis
09/2010
Country
US
State
AK
City
Anchorage
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.
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
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.
 

Willy.Fouts

Member
Joined
Nov 19, 2013
Messages
10
Reason
DX UMND/PLS
Diagnosis
08/2013
Country
US
State
CA
City
San Francisco
Thank you all very much. I appreciate your help.

.... Stay Golden!
 
Status
Not open for further replies.
Top