How Is Your MS Affected by Temperature Sensitivity?

How Is Your MS Affected by Temperature Sensitivity?
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“I’m too hot!” My brain was turning to mush as my body seemed to grow heavier. I could feel the energy draining out of me.

This isn’t an uncommon complaint when the weather grows hotter during the summer. Most people love warm weather and can’t get enough, but I wouldn’t exactly say I enjoy it.

On the other hand, in cold weather, my pain, stiffness, and tiredness tend to increase.

It’s a frustrating balance to keep up with temperature changes at all times, because my symptoms fluctuate so quickly. My husband becomes perplexed about my constant changing need for different layers of clothing every hour of the day. 

The MS Trust estimates that 60-80% of us with MS suffer from heat sensitivity, while the Multiple Sclerosis Foundation estimates about 10% of us have cold sensitivity. So, if you’re reading this while nodding along like a bobblehead, you’re not alone. 

Cold and heat sensitivity could be due to many different factors. For example, maybe you have nerve damage in the part of the brain that controls body temperature, so your body doesn’t sweat or shiver. Reactions like sweating and shivering help to control body temperature. Without those bodily reactions, even minor spikes or falls in temperature can impact you. 

For me, it’s most challenging to keep a consistent body temperature near the end of the year because some people turn their heating fully up to fight the winter cold. It’s one thing when the weather is too hot outside, and it’s another battle entirely when it’s someone’s house that’s overly warm. I feel like it’s hard to breathe!

Meanwhile, other people leave their houses super cold. 

How do you manage this awkwardness? You can’t exactly say, “Sorry, Mum, I can’t come over to visit because your house is so hot that it makes me feel super nauseous!” That’s especially difficult to do around the holidays, when you’re most expected to show up.

My technique is to wear lots of different layers so I can quickly adapt to various environments. If it’s freezing outside, I’ll put on a coat over a scarf, a couple of cardigans, a sweater, and a vest top, plus multiple pairs of socks. I’ve learned it’s far easier to take layers off than to go through that embarrassing situation of being the only one wrapped in a blanket. 

Organization skills are your best friend. My bag contains everything I could need in an emergency. In the summer, I make sure to carry a hand fan, water, and gum. (Check out why I have gum to keep cool in my column with tips for keeping cool.) In the winter, I’m more likely to carry acetaminophen, plenty of lip balm, an extra cardigan, and extra socks.

If heat is an issue for you, there are tons of cooling vests and scarves out there that work like a treat. I used them a lot when I was running during the summer. 

Are you affected by temperature? What do you do to dampen its effects on your symptoms? Please share in the comments below. 

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jessie is the host of the DISabled to ENabled podcast and author of the “ENabled Warriors Symptom Tracker” book. She’s also an illustrator working with MS charities and magazines worldwide. She’s interviewed paralympians, radio DJs, chronic illness bloggers, marathon runners, and more. Jessie, based in the U.K., was diagnosed with MS at 22 years old and was told by a doctor to “go home and Google it” to find out what MS was for herself. Her own experience of being newly diagnosed so young was negative and scary, so she fills the internet with positivity for other anxious MS Googlers to stumble upon.
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Jessie is the host of the DISabled to ENabled podcast and author of the “ENabled Warriors Symptom Tracker” book. She’s also an illustrator working with MS charities and magazines worldwide. She’s interviewed paralympians, radio DJs, chronic illness bloggers, marathon runners, and more. Jessie, based in the U.K., was diagnosed with MS at 22 years old and was told by a doctor to “go home and Google it” to find out what MS was for herself. Her own experience of being newly diagnosed so young was negative and scary, so she fills the internet with positivity for other anxious MS Googlers to stumble upon.

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8 comments

  1. Penelope Watts says:

    I suffer from really cold legs and feet with PPMS. I bought a furry electric blanket to put over them when I’m on the sofa. I also find that using an electric deep massage machine helps a gr8 deal.

  2. Debbie Attman says:

    Well I guess I’m in the 10% I’m fine in the summer and in the winter blood does not flow to my feet or hands correctly I’m always cold and never warm enough

  3. Ronald M says:

    With MS I am extremely sensitive to warm temperatures and even when sunlight touches my extremities. For over a year heat would activate severe itching throughout the entire body including some internal spots. I was living with deep ‘wounds’ from the scratching. Along with this I had lightning-like pain that felt like broken glass again throughout the body including one eye.
    Fortunately nerve-blockers have worked and now for the last few months I can sleep without having panic attacks waiting for the itching to start.

  4. Charles Lumia says:

    A few late springs/early summers ago I was exercising. It was super hot, like 95 or something crazy (in New York). I seriously thought I was dying. I could barely move or think or do pretty much anything. I’m surprised I made it home by myself.

    It’s funny looking back on it now. At the time I didn’t think that the weather could have such an impact on me. This is before I was diagnosed with MS so it wasn’t even on my mind. I was just shocked by the reaction my body had to what seemed like a little heat.

  5. My name is Rosemarie , and I have a sensitivity to cold. My problem affects my feet. As soon as I sit or lay down , I have to cover my feet with extra blankets , extra socks or microwaveable socks. This generally as soon as I take my shoes off. I find myself often having to stop what I am doing , to warm up my feet. Wenn they are cold , they are usually numb and at the same time in pain. This is often severe , and I have to test the temperature with my hands , so as not to burn my feet. Often unable to feel the warmth , needing my husband to frequently reheat them. This can be very disruptive with my day , and often also requires me to take pain meds.

  6. My name is Rosemarie , and I have a sensitivity to cold. My problem affects my feet. As soon as I sit or lay down , I have to cover my feet with extra blankets , extra socks or microwaveable socks. This generally as soon as I take my shoes off. I find myself often having
    to stop what I am doing , to warm up my feet. Wenn they are cold , they are usually numb and at the same time in pain. This is often severe , and I have to test the temperature with my hands , so as not to burn my feet. Often unable to feel the warmth , needing my husband to frequently reheat them. This can be very disruptive with my day , and often also requires me to take pain meds. I bought bigger boots for myself , so I can wear two pairs of socks.

  7. Penny-Marie Wright says:

    I’ve always had a problem with too hot & too cold. Would love it if it was just even, not too hot or cold. The last while I’ve found that I’m freezing all the time. I also have Fibromyalgia now too which could be the problem with being so cold now. in my apt. I put a sweater on or even my fuzzy house coat. My mother puts her heat up a bit higher when she has company but at night she turns it down lower, not as low as she would if she’s alone though. She has lots of blankets on her spare bed so once I’m in bed I stay warm. I haven’t had a big problem anywhere else & of course now with Covid-19 definitely don’t because don’t go anywhere to visit.

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