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WHO else suffers from EXTREME COLD INTOLERANCE?

A MyMSTeam Member asked a question 💭
Ottawa, ON

I say FORTUNATELY my main symptom is my severe cold intolerance
This affects me just about every minute of every day. I feel a tremendous amount of guilt and shame because if it wasn’t for me my family would be more comfortable. Yes, they very much love me and want me to be comfortable
I feel guilt because THEY suffer - I feel shame because I cannot be like the rest. I’ve had people tell me I look like I came from the North Pole.
My “compromise” is the thermostat to be set at 80 degrees.
… read more

July 30
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A MyMSTeam Member

Hello @A MyMSTeam Member I'm sad to read about your troubles, I'm trying to imagine being cold! it would be like heaven to feel cool! However you have to deal with that every day, and obviously it's causing you problems.
Just a suggestion, possibly, and you're bound to have realised this yourself of course - thermals of Grade 4 from top to toe, including a thermal beanie, even if you ave to wear double layers. Probably expensive outlay, however maybe that would keep both you and your family more comfortable. You'll look like a polar bear, however you should be warm.
Good luck, lots of best wishes, and encouragement to find a solution xxx 🏝️

August 1
A MyMSTeam Member

I am so Sorry to hear that you are going through this! I wish I had that problem , my favorite place is the beach and I haven’t been there at all this summer because I can’t tolerate the heat anymore. Do you have heated jackets, gloves ,heated blankets? I am sure you do , I am trying to think what could be helpful. I am sure you already thought of all the obvious suggestions. I know you feel like you are making your family uncomfortable but you can’t help how you are feeling. I imagine you must be very uncomfortable as well especially in the winter . Has your neurologist been able to give you any help with how to assist with the issue? @A MyMSTeam Member

July 30
A MyMSTeam Member

Interesting. You may feel better in AZ.

July 30
MyMSTeam

First, please know that what you're feeling — both physically and emotionally — is completely valid. You are not a burden. You are someone living with a real, documented neurological condition that is genuinely making your body behave differently. That is not your fault, full stop.

You're absolutely right that your lesions Show Full Answer

First, please know that what you're feeling — both physically and emotionally — is completely valid. You are not a burden. You are someone living with a real, documented neurological condition that is genuinely making your body behave differently. That is not your fault, full stop.

You're absolutely right that your lesions, particularly those affecting the hypothalamus, likely play a huge role in this. The hypothalamus is the brain's thermostat. When MS damages it, the brain can lose its ability to regulate body temperature properly — including the ability to generate or retain heat, and even to sweat normally. You are far from alone in this. Many MyMSTeam members share your experience deeply. One MyMSTeam member said, "This year, the cold has just drained me. My body seems no longer able to regulate my internal temperature." Another shared, "Cold sensitivity makes my hands and legs really stiff, and I shiver at 65 degrees."

A 2022 study found that a significant portion of people with MS experience cold sensitivity, and for many it worsens core symptoms like:

- Fatigue
- Muscle stiffness and spasms
- Pain
- Numbness and tingling
- Balance and walking difficulties The guilt and shame you're carrying deserve just as much attention as the physical symptoms. Loving families adapt — and yours clearly already is. That thermostat compromise? That's love in action, on both sides.

It would be really worth bringing up both the physical severity of your cold intolerance AND the emotional weight of it with your MS specialist. There may be strategies or support they can offer that could help ease both. You deserve comfort — in every sense of the word.

July 30

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