The Heat and the Cold Can Impact MS Symptoms – Our Community Members Share Their Experiences

For many people with multiple sclerosis, heat can exacerbate MS symptoms. One of our contributors at MultipleSclerosis.net, Matt, even moved from southern California to Colorado, partly to escape the heat. However, another one of our contributors, Jackie, experiences MS symptoms, especially in her legs, when it is cold. It seems that temperatures affect people with MS in multiple ways, and in a recent article, Stephanie shared her experience. While she is extremely cold during the day, she finds herself turning into a “human torch” at night. As it turns out, many of our community members also overheat at night, or have other issues regulating their body temperature. More than 30 people in our Facebook community commented on Stephanie’s article, and here’s what they had to say:

I have night sweats too!

  • I had no idea that this was a symptom of my MS, which I was only diagnosed with 2 months ago. I also found out in an earlier post that “sensory overload” is part of it. Just ask my family, Saturday I was a complete jerk with EVERY little noise and I had no idea why. At least I can feel validated and not completely crazy!
  • I thought I was the only one who suffered from these strange symptoms! I prefer the heat over the cold, which makes my extremities hurt. And I freeze constantly – until I go to sleep. I bury myself under the covers to get warm, but wake up in the middle of the night kicking them off of me because I’m drenched in sweat. It’s miserable and ridiculously confusing!
  • I’ve been having night sweats for awhile and my neurologist keeps saying it is not my MS, but it didn’t start happening until a year after my diagnosis.
  • Fantastic post. This is something many people with MS experience as part of life with the condition and will help other people see they are not alone.
  • I, too, prefer the warm, not hot, weather. I freeze all day, but I can’t stand the covers on in bed.
  • I thought I was the only one who had the strange symptoms. I haven’t slept because of it for now 3 weeks, and it’s driving me insane.
  • I thought it was menopause possibly starting early. I never thought my MS did this. It’s horrible, especially when it’s actually cold.
  • I have the same problem with night sweats. I’ve had every test and no one can explain why I have them. Thanks for the article. I don’t feel so alone.
  • Yes, I definitely relate! I turn into a Bunsen burner especially late at night and no matter how cold it is I sweat like crazy without even getting all that over heated or hot. I still wake up sweaty.
  • ‪I sleep with ice packs all year long here in Michigan.
  • This is me, 110%! I’m freezing all day then a human furnace at night. And I can’t handle sleeping without a heavy blanket either from years of doing so before these symptoms.

I’m cold sometimes, and really hot at other times.

  • My husband and I had to resort to having our own bedrooms, and I often keep a fan on and have eight blankets. This is all because my body temperature is yo-yoing.
  • My feet always feel cold even though they’re warm especially when I’m in bed
.
  • I get really cold then I get really hot. It’s off and on.
  • I have that problem too. I thought it was just me, so thank you for posting this. I get night sweats to the point that my shirt will be wet.
  • I know EXACTLY what you mean! I am freezing cold, and burning up at the exact same moment. But it’s not just at night. I am always uncomfortable.
  • I thought it was just me! My body is like a house with no insulation. I’m either too hot or too cold.
  • I’m always warm – my hot flashes ended some time ago. My feet are always cold, even when it’s 100° outside. My circulation is getting so bad.

My Body temperature is hot all the time!

  • I’ll trade with you! I am like a human torch all the time. I never cool off even in the winter. People think I’m crazy because I don’t wear a jacket even in the winter. It makes it very hard to sleep because my husband is always cold and I am always hot.
  • I live in IL and it’s Dec. 22. I still wear shorts and a short-sleeved shirt to bed. I still sometimes wake up sweaty.
  • I don’t get cold often, but I’m always really hot since being diagnosed. It’s winter and I’m running my fan on full blast!

I’m cold all the time!

  • The only time this overheating ever happened to me was when I was taking Rebif. Now I am a thermostat nightmare – freezing cold all the time, layers and layers of clothing, and at night I have found the one thing to help go from hot to cold with minimal effort – believe it or not –  is a sleeping bag. The silk of the bag stays cool, and it warms up like a champ too so it’s easy to toss on and off at a whim without too much effort while TRYING to sleep.

Other:

  • I also find that using a sleeping bag helps me better adjust temp at night. I found this out by accident in September. Long story short, I was homeless from March of this year until December first. I was living in my car and when the season started shifting here in New England I finally borrowed a sleeping bag for the cooler nights. I slept much better with the sleeping bag than I did with blankets. My car would get stuffy at night with all the windows rolled up yet it was also chilly. The silkiness of the sleeping bag was comforting when I was feeling chilly and it was soothing to lie on top of it when I was feeling a little too warm. Now I have finally moved into an apartment and I don’t want to give the sleeping bag up.
  • I don’t do well in the heat. AC is for me in the summer, but I have been having cold hands and feet this winter nearly all the time. I am sitting in front of a floor heater nearly all the time now, and I live in California. There’s no way could I ever go or live where there is snow!
  • I don’t usually get hot or cold, but lately in the last 6 months I have sweating episodes that last about 20 minutes where I am drenched. I’m way past menopause so I know that can’t be it.

What about you? Do you have trouble regulating your body temperature? Do you have a hard time with either hot or cold temperatures? Please share with us in the comments!

Share Button

Comments

  • Rosa says:

    this is the hardest thing to control for me…I like the cooler temps cuz I always run to warm…I have found the most comfortable temp is 73 -74 degrees…any warmer and I am hot and miserable and exasperates and any colder I am in pain…I haven’t been able to take even a luke warm showers in almost 15 years…if I do I break out in itchy miserable rashes that last for almost 6 weeks or more and within the last couple years the cooler/cold showers have became so painful….my bedroom runs cold at night and when I go to bed I snuggle completely even over my head to stay warm…but when I get toasty warm I find I no longer sleep with the covers most the night… I do so miss the simple pleasures of life…I do live with fans on me 24/7 even in the coldest winter…the best way I can come up with to stay warm and cool the same time…

  • Patty says:

    I have had MS for 25 1/2 yrs. and never had body temp. issues out of the ordinary (always cold just like my two sisters) so it never occurred to me that my recent hot/cold goings on was MS related. I guess it could still be, I don’t know. I get really cold so I wrap up in blankets and sometimes that helps, but other times I just keep getting colder. I go in our bedroom every night six hours before I go to sleep and sit on the side of the bed and watch Netflix on my laptop and read, etc. I get up and move around a couple times briefly. Half the time I am freezing so I wrap up real good, I’ve even been wearing those hospital footie socks with grips over top of my short footies and sometimes that doesn’t even help. I then after being all wrapped up start burning up about a third of the time. It’s all hit and miss, there is no tried and true method to get warm. I just wrap up and hope for the best. Then on top of this, there will be the times I am in bed with cold feet (which always keeps me awake or wakes me up) and all I do is get up and walk to the bathroom and back, get back in bed and my feet are fine, not cold at all. But even that is unpredictable. I have weighed in the 350 range usually, but have weighed in the 250 area for three years and I am 59 yrs. old and never had any kids. I was predictably cold most of my life.

  • Amy says:

    I freeze all day. I burn up an wake up covered is sweats to point I have to take a shower as soon as I get up an I have wash my pillows case. Can anyone help me

    • Angel says:

      Thank you for reaching out, Amy. While heat sensitivity is a common issue with MS, individuals can also be impacted by the cold. You can try to discuss these symptoms with your doctor for guidance on how to address both the heat and cold issues, perhaps they can help you create a treatment plan using certain therapies or devices to help reduce these symptoms. You can also email MSQuestions@mymsaa.org for additional information. Take care.

  • Maurizio Palombi says:

    I live in Las Vegas and have very few issues with the heat, however at times my body tells me that I feel a chill and suddenly I am frozen to the spot, shivering uncontrollably. It just happened this evening and I am still stuck to my seat, I feel that if I move I will expose myself to the frigid temperatures.
    I am 54 years old and overall I feel very lucky to still be able to live and work a relatively normal life. I wad diagnosed 30 years ago.
    Any one else experience this?

    • Angel Blair says:

      Hi Maurizio, thank you for reaching out to the MSAA. If you’d like to talk with others living with MS to ask about their experiences, you can do so on MSAA’s online peer support forum, My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. Here you can ask questions and get feedback from others about different things related to MS. Hopefully your doctor can provide some feedback about this symptom as well. I hope the site is helpful to you and that by sharing your experience others will do the same. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist

  • Leave a Comment

    NAME:

    EMAIL:

     SPAM PROTECTION: Sum of 3 + 8 ?

    COMMENT: