It seems that just about everyone with MS struggles with heat - except me, that is. Heat doesn't really seem to phase me more than it did pre-MS. I love hot baths, love to lie in the sun, and overall feel better in summer than in winter when my Raynaud's is more active. Heat intolerance is always on the lists of the most common symptoms of MS, and I read discussions here about problems caused by heat daily. So I am increasingly curious to find out if there is anyone else here with MS who isn't affected (more than usual) by heat. I'm also very interested in learning how it affects your MS. What do you experience? Thank you! 😎

29 Replies

  • Dianekjs, it's Fancy1959. I am luckier than most , as heat doesn't totally wiped me out. I have to make sure I don't dehydrate and I'll have to keep my neck covered with either a hat or my hair and my major lesion is on C3 vertebrae. If I get too much sun on my neck my MS is not happy at all. I do try to limit my time outdoors when it's extremely hot. If I need to be out I tried to go out early morning or late evening when the temperatures aren't as Xtreme. I guess you could say I'm not as lucky as you but I'm luckier than many people in this chat room when dealing with the heat.

  • Hi Fancy1959, that's really interesting, I didn't realize that sun/heat directed at an area where there's a lesion would aggravate it. I suppose I never really considered it before. I have about two dozen lesions in my brain, but just one on my spinal cord at C7. I guess I am lucky so far with regard to heat, the main target of my MS has been my legs and a foot so far.

  • Well I do have to say that the heat does bother me, what was funny ok it wasn't fun. My feet are always cold and yesterday the first day of 90*f weather for the year my feet were cold so that kept my body temp good. I do have to say today it's 93*f I asked my son to bring out the fan. I am staying in side next will be the air conditioner.

    I do have to say I have raynards also but since the MS thing started I cannot be out side in the heat. I am glad 😁 for you if you can stand his weather.

  • ssdw1958 I often have a heating pad wrapped around my foot to help with the awful numbness and sensation from MS combined with Raynaud's in my toes. It is challenging at times. Stay cool this summer. :-)

  • dianekjs

    I use disposable heat pads that I stick on my socks and leg warmers. It doesn't matter what the ambient temp. Is. And my feet don't necessarily feel cold to the touch.

    I am still unsure why the local heat helps the neuropathy (not just the raynauds) but general heat worsens nerve conduction?

  • ssdw1958

    Yesterday my cold feeling feet and legs (neuropathy) demanded I go for a walk out in the 93f weather...too bad the rest of my body went on strike after 10 min. in the ☀️

  • erash, that is a great observation. Because the excruciating nerve pain behind my knee seems to respond to directly applied moist heat from a thermafor, I use it but then the rest of my body starts to rebel.

  • Being in extreme heat feels like someone putting a hose inside my body and siphoning out most my energy. I'm no good after that until I cool off and refill my energy tank.

  • Royjr, that definitely doesn't sound pleasant. I get the crippling fatigue, but it doesn't seem to be heat-related - and is as likely to be caused my connective tissue disease as by my MS. Does strong sunshine without intense heat cause problems as well?

  • dianekjs For me it is the heat more than the sunshine. This spring I have spent time sitting in the sun when the air is cool, temp has only been in the 40-50's, but the sun was hot and that didn't bother me.

    But throw in some heat and I am like Royjr and I can get to the point where my legs don't want to hold me up...

  • Yes it do, but not as severe

  • Royjr great way to put it. I looooove the sun and the beach and the water. But since MS, same exact thing. I could not have said it better myself. Even if my winter coat is to heavy. I hate winter and cold with a passion (don't ask why I left New England and moved to Chicago)

  • Like you, I am fortunate at this point not to be affected by the sun or heat. I, too, love the summer and the feel of the sun on my skin. I tend to get cold easily and often use my heating pad in bed and seat heater in the car. I feel blessed not to be affected by the sun as my husband and I enjoy many outdoor activities. MS would be much more difficult to deal with if I had heat sensitivity. So, you are not alone. 😊☀️

  • dianekjs

    My heat intolerance has worsened over time. Early on, I had no heat related issues that I was aware of.

    Like you, cold worsens my raynauds but now seems to also inc. stiffness/spasticity.

    A few months ago, our chat group decided we'd all move to a utopian MS climate controlled world 😊

  • If you find that place please send me the address. My husband before he left for work gave me a small Gatorade I think he was giving me a hint to stay hydrated one good thing it's only going to get in the low 80's today better than the high 90's. Stay cool everyone.

  • erash, I hope the heat doesn't become more of an issue for me, but it sounds as if it may. I'm still trying to figure out which my Raynaud's has a harder time with, summer air conditioning or winter cold. I'd better enjoy the sun while I can. :-)

  • dianekjs I miss those long hot showers but now find them exhausting. I crave the sunshine but need to limit time as I can feeling the numbness, tingling, and weakness getting stronger the longer I am out in the sun. When the sun is out,I try to get a half hour a day for vit D. Luckily our average summer temp is in the 70's

  • lois52, I don't do the long hot showers often now because my legs can be unreliable standing for too long. I switched to baths with a hand-held shower attachment and that works well for me. Like you, I try to get a little sun a day both for the natural vitamin D and because it makes me feel good - it relaxes me. I haven't noticed sun exposure aggravating my numbness/tingling, but will stay alert for a connection. Seventies are ideal!

  • That's the one thing that MS stole from me, that literally kills me!😭😭 My sun! Now spending to much time out will make me ill. Using the neck wraps and lm working on the Polar wrap to be more comfy, helps a ton!

    J 🌠

  • Jesmcd2, I think It would about kill me too, I'm sorry. :-( I'm glad the wraps provide some relief, at least.

  • My first real relapse started last summer and went through the fall into winter. This will be my first opportunity to see how the heat affects symptoms. My feet and hands tend to stay uncomfortably cold most of the year, so a heating pad stays on the bed.

  • I, too am bothered by the heat but also extreme temperature changes. It has been very warm in the 80's and very windy here starting Monday until today. It plummeted from mid-70'sf late yesterday afternoon to barely reaching 50f and cloudy today. I'm miserable :-( Welcome to May in Michigan, time for a nap!

  • dianekjs I have only been diagnosed for 2 years and live in New England so I have had somewhat limited heat exposure since I knew I had MS, but so far I am bothered more by cold than heat. I too love the sun and sometimes joke that in a former life I must have been a solar panel! Even when it's in the 90s I take a sweater with me to the grocery store or a restaurant, and my fingers are often like icicles (toes too).

  • bavery207, it sounds like you are a kindred spirit, with regard to temperature, at least! I'm always armed with heating pads, socks, and gloves for my freezing fingers and toes, and the sun just makes me happy and more optimistic. Too many gloomy days in a row really affects my mood, unfortunately. :-(

  • dianekjs I am one of those who is bothered by extreme temps in either direction, but with age (and progression) I think cold might bother me more. I relocated from new England to FL a couple of years ago so that says something. Heat saps my energy & exacerbates my other symptoms but I thrive on being outside & in the sun. I just don't go out during the hottest part of the day, or stay out too long. Another funny thing is I don't really mind being a little warm, especially when I sleep. Of course this may be normal aging.

  • I have had MS for 17 years and the heat never bothered me until 2 years ago, the sun is not the problem it's the heat. so When it gets hot my right leg will not work until I cool down. The cold makes me walk like the TIN MAN. rather have the heat then the cold.

  • Hello, dianekjs. While heat does bother me, I find that when you add humidity into the mix, it's absolutely lethal. When my husband and I lived in South Florida, I actually was on house arrest except to go to work because as soon as I opened the door it wasn't only the heat blast that hit me but I also felt like a wall of water was closing in and I would get completely overheated and the symptoms would return (tremors, cogfog, worse mobility problems, etc.). We now live in Northern Arizona where it's hot but very negligible humidity. And while 89 degrees is still 89 degrees, it feels like 75 without the humidity and I find that I do much better even in higher temperatures.

  • You are so lucky! Heat outside was not my enemy until here the past few years.

    I have not been able to take a hot soaking bath for years. It shuts me down. I remember taking hot bath or shower and collapsing when I got out. Never could understand why until I was diagnosed with MS.

    Now the humid hot outside makes me weak. I have grandkids that play baseball and love to go. I received my cooling items this year to help me cope.

    You areblessed! I wish the days I could work in the yard, play with the kids, get in the pool in the heat of the summer was still around hoping for the cooling items to help bring some of those things back!

    I live in Louisiana. What area do you live in? I think it makes a differences but that is my thoughts

  • I have only been affected by it for a year. I loathed anything cold, wore a layer under my scrubs in the winter, always had a heating pad for my feet at night, and I own a battery operated heated vest. I would work out just so I could reward myself with a sauna visit!

    Now I have ice vests and Uhthoff's. I'm sensitive to very little change in temperature 🙄

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