Last reply 1 month ago
Feeling cold… very cold. And it hurts!

Hello everyone…I wonder if you could please advise me.
I have developed a symptom which is causing me a bit of bother but I don’t know whether it is MS related or not, so you are my first port of call.
My ‘internal thermostat’ seems to be going haywire over the last few months. If I am moving about I am pretty okay, perhaps erring on the feeling warm side, unless it is bitterly cold outside. However, if I am sitting or lying down for any period of time I get rediculously cold. I can be sitting in the lounge with the fire blazing…the room at 24oC.. wrapped up in layers of clothing, a fleecy blanket over me, and the dog under the blanket…and still get chilled to the bone. So cold that I feel I can’t move and my skin is cold to the touch.
Again, the other evening I was at a music session, the pub has a fire, everyone else was hot and stripped off to t-shirts….and I had a shirt, cardigan, outdoor coat on and needed to put gloves on…and still felt cold to the bone. In fact if I want outside and walked around for a few minutes, I warmed up.

I find if I get this cold to the core, all the symptoms.. spasms and pains etc increase.. and I feel like I am shutting down.

Is this normal…or my new normal??
Previously, I found that I couldn’t tolerate heat, and found heat too exhausting.
I don’t know which is worse.
Cheers Emma T

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mlgilber1
1 month ago

I get this… I told my past neuro about it and she didn’t say much, but I’m experiencing it now so I put a call into my MS nurse. I feel so cold that it burns and I’m super sensitive in some areas. It doesn’t matter how many layers I put on, I can’t get all of me warm and I live in Arizona which is one of the warmest states. Our winters aren’t that bad. That’s my experience. I can let you know what my nurse says after she calls me back if you want, but you may want to call yours as well. Especially if it’s new for you.


mlgilber1
1 month ago

I’m sensitive to both which I know is actually not that uncommon. Heat makes me tired and weak. I’ll also feel sick if I’m in it too long. The cold makes all my pain worse, makes me stiff, and super sensitive.


stumbler
1 month ago

@pikilily . there’s some details here of this particular problem :-

https://www.mstrust.org.uk/a-z/temperaturesensitivity


pikilily
1 month ago

Thank you both. @stumblet I will check that out.
@mlgilber1 – thanks it’s reassuring to know that I am not a freak… LOL.
I know that the heat issue is a common theme, but not come across much about the cold problem.
ET x


mlgilber1
1 month ago

@pikilily Well I just spoke to my nurse and she told me since it was a past symptom it’s probably returning because I’m coming up on my Ocrevus infusion and the medication can wear off a month prior. You’re definitely not a freak! People look at me oddly all bundled up because I’m freezing whereas they’re warm.


edmontonalberta
1 month ago

@pikilily

Welcome to my nightmare… My 1st wife (may she rest in peace) had Scleroderma so any temperature drop shut down her blood circulation; her father had MS so he couldn’t stand heat. So given the options, I was fine with being diagnosed with MS…

For some strange reason, any temperature drop makes me freeze. Considering the temperature has been -30 (not including wind chill factor) where I live, the past week has not been fun. Two summers ago, there was only one day that I did not wear long johns under my clothes.

No idea what the solution is Emma; except I know things could be much worse. And complaining doesn’t help, so I wear socks that are good to sub zero temperatures, my long johns & continue with my journey on Planet Earth…


nutshell88
1 month ago

I wonder if its allowed in the uk to set fire on hew I guess it is thats why you have fire place in many of your living rooms
It helps us so much in tents if we camped at the desert.

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