Cold limbs

EricInLA

Distinguished member
Forum Supporter
Joined
Oct 20, 2019
Messages
116
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
The weather has just recently turned cold in LA, and I was at an outdoor family gathering this evening. At the end of the evening, my hands were frigid and my right hand -- the weak one -- was SIGNIFICANTLY weaker than usual. In fact, it was pretty useless, which scared me. By now my hands have returned to warmth and my right hand has returned to its baseline level. My question for anyone who may know - do these temporary cold spells have a cumulative effect, i.e. speed up progression? I am hoping to take a trip with the family to the mountains this winter where hands will get cold (despite best efforts with gloves), but I would think twice if letting hands go cold contributed to progression of weakness.
 

lisa g

Distinguished member
Forum Supporter
Joined
Apr 17, 2019
Messages
217
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Eric,
I think what your feeling is normal for us with ALS. We already experience stiff muscles in our limbs but often in cold weather it causes the muscles to contract and feel stiffer. I don't feel this too much when I'm at home in Florida but, when I'm up in Ohio if I'm cold my legs exhibits spasticity feeling like 2 tree logs that won't bend making me shuffle when I walk. I make sure when I'm up here to wear long johns or thermal tights under my pants to keep my legs warm so they don't stiffen up.
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
553
Reason
Lost a loved one
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
Eric, my husband had exactly what you describe when cold. The cold affected his hands the most and when I was able to warm them with a heating pad or mirowaveable neck wrap, he always returned to his baseline weakness. I do not think it speeds up progression.
He did seem to be even more cold sensitive as the years passed and could not tolerate going out in the winter.

Sharon
 

nona

Distinguished member
Forum Supporter
Joined
Oct 1, 2018
Messages
411
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
I don't think it speeds progression but it definitely exacerbates symptoms. I always wear a blanket over my legs, even in summer, and now I keep my hands under it most of the time because they get cold.
 

Nick1439

New member
Joined
Jun 28, 2017
Messages
7
Reason
PALS
Diagnosis
11/2016
Country
Us
State
CO/NJ
City
Co.Spngs./Mon.Junc.
I have this issue in my left foot, I found that wool socks And sweatpants (or something similar) help. I'm considering heated clothing for the real cold days. for fair weather, ( 60-70) long sleeves are a must, layer up if it's colder than that.
 

ilanarachel

New member
Joined
Jan 19, 2020
Messages
3
Reason
PALS
Diagnosis
07/2018
Country
US
State
CA
City
El Cerrito
I also experience this. I found that wearing fingerless gloves work pretty well. Today was our first cold day in northern CA, and I can feel the difference. I try and have a small space heater near me if I'm using my hands
 

Jimi

Distinguished member
Joined
Sep 24, 2019
Messages
140
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
I definitely get cold easily. Extremities in particular. I believe it's related to the loss of muscle, which in turn leads to less blood flow and warmth to affected areas. That's my theory, anyway. In terms of progression, in my experience, everything always returned to where it was once I warmed back up.
 

frankb

Senior member
Joined
Jun 8, 2011
Messages
558
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Sandy Springs
yep, i believe we have consensus ! drats !
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
382
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
Same here as everyone has mentioned. It used to be just hands which I had to warm using a microwave rice bag to get them to work. Now the feet, ankles, and calves are ice cold most of the time needing blankets to keep warm. Return to warmth = return to baseline. I don't know of any decline in progression...that's a question for a nuero.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
That's why I can't tolerate the pool if it goes below 85 degrees. The extra weight didn't help. My feet are cold most of the time, even in sneakers with thick socks. I feel so much better under a hot shower.
 

MToole

Active member
Joined
Apr 16, 2016
Messages
50
Reason
PALS
Diagnosis
02/2012
Country
US
State
IL
City
Elmhurst
There would be times where I would start with a beer in my hand and as it got colder outside I would have to switch to drinking from a straw with the beer on the table. A lot of close calls, but I did drop and spill a few.
In my case, I would say it did not affect my progression rate.

I think they are making some real nice battery-operated heated gloves these days. I have been thinking about the jackets and gloves for a bit, but have not yet had the chance to check any out.
 

lisa g

Distinguished member
Forum Supporter
Joined
Apr 17, 2019
Messages
217
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Kim,
I know the feeling, if my pool gets below 85 degrees I turn into a whimp. My husband says he's going to buy me a wetsuit 😳
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,975
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Lisa,
People actually call or text me when the water is "acceptable." I used to scuba dive in very cold water and I weighed less than 110. I was cold but it didn't deter me from plunging in.
The odd thing is I get warm at night. I start out cold with a heating pad, set low, on my lower back. After a few minutes I'm hot, no matter how low I crank the air. Then when I wake up I'm cold again. My body is like a thermostat gone bad.
Our pool got up into the mid 90s this past Summer. I was fine. A bunch of old ladies complained and they turned off the heater. Then we had two days of rain and it went down to 83. I waited until later in the day when the sun had time to warm it up but it still felt cold. Fortunately, it was 84 outside so I stuck it out.
It's hard to believe I come from upstate NY and swam in 68 degree lake water all Summer.
 

MToole

Active member
Joined
Apr 16, 2016
Messages
50
Reason
PALS
Diagnosis
02/2012
Country
US
State
IL
City
Elmhurst
It is an odd cold feeling. Different than being cold due to the temperature.
I sometimes think about this. It's as if my body is not generating enough heat.
Why are we so cold?
I think this would be a great area of study.
 

nona

Distinguished member
Forum Supporter
Joined
Oct 1, 2018
Messages
411
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
The lack of muscle and lack of movement reduce our circulation. I'm warmer when my feet are raised, which improves blood flow.
 
Top