The Heat of Summer vs Multiple Sclerosis

The Heat of Summer vs Multiple Sclerosis

It’s that time of the year; summer is right around the corner, or, it’s already here, depending on where you live I suppose. Well for me, here in the “desert” of Southern California (roughly 30 minutes from Palm Springs), summer has been here. But now summer is about to get real. We have been in the 80’s and 90’s for a while now (sometimes peaking in the low 100’s) but by the end of the week we will be hit by a heat wave and we will see at least 110. Palm Springs is already hitting 115 and 120 is not unusual! I am really sensitive to the heat, if it is over 80 I usually do not venture outside of my air conditioned room. But this year I am in a panic, I expect that it will be an especially hot summer where 110-115 is the norm (I am no expert but I follow the weather pretty closely) and as my health has been pretty unstable lately I dread to think what a day in this heat will do to me if the power goes out. So since this has been on my mind for the last week or so I thought I would take a moment to explain how the heat can affect people with multiple sclerosis and how it affects me since I am so sensitive to it.

Many people with MS experience a temporary worsening of their symptoms when exposed to heat whether it is going outside on a hot summer day, taking a hot bath or overheating from exercise. I have even talked to someone who said she would get pins and needles if she used a hair dryer! The technical term for heat sensitivity in MS or other demyelinating diseases is Uhthoff’s phenomena/sign, which is named after William Uhthoff, a German professor of ophthalmology who first described this apparent worsening of symptoms (when patients were exposed to heat) in 1890. Before the invention of the MRI machine people were diagnosed with MS after being put in a bathtub full of hot water to see how they reacted. This is mentioned on the National MS Society’s website if you want a reliable source for this widely talked about piece of MS trivia.

I can remember being a child; we lived near the ocean in Costa Mesa, CA and we would often go to the beach after school. I remember the feeling of the sun blazing down on my back while I played in the sand; all I had to worry about was my Mom wanting to cover my face in sun tan lotion. I hated that. Then as a teen, I can remember often being out in the desert riding dirt bikes or exploring trails. I didn’t like the heat but then again who did? I could deal with it just fine. But after I was diagnosed with MS? Things slowly changed. I started to notice that the heat really made me feel tired so I stopped going out in the summer. When I did try I would notice that my vision very quickly became really blurry! Over the years I got progressively more sensitive to the heat. Now it does not even take much; when I am inside where there is no cool breeze I start feeling really uncomfortable when it is just 75 and outside where there is a breeze my limit is usually about 80. My vision does not really seem to suffer like it did before but the heat instantly drains me of what little energy I had to begin with, makes me dizzy, weak and nauseous. But worse of all is definitely the fatigue, it feels unbearable, like I am going to pass out if I don’t jump into a cold shower!

It seems the heat can make most anyone desperate to cool off but add the MS heat sensitivity into the mix? I have been desperate… There were times that I filled the bathtub with ice water and just sat in there till it all melted because I felt so unbearably hot! Almost like my body could not regulate my temperature properly! I have tried attaching a fan to the A/C vent before to try to suck more cold air out into my room but it didn’t work that well but again, I was desperate. I bought a cooling vest (basically a vest you fill with ice packs to stay cool) because many people with MS say this helps a lot but I personally felt like it didn’t help, like my body was producing so much heat that the vest was just trapping it in and making me hotter. Probably not what was actually going on but that is how it felt. That’s the problem with hot weather, you can only strip down so much, you can’t take your skin off. At least in cold weather, you can keep adding layers! Sometimes I will take a shower and not fully dry off when I get out so I can just sit in front of a fan! Currently, my entire room is covered in sheets of Styrofoam insulation to try to keep the heat out and cold in but this has it’s problems as well but my point is, the heat can make you desperate when it makes you feel like such garbage!

Now I do recognize that many people are sensitive to the cold as well, particularly those who suffer from spasticity. When I am in an environment that is really cold, as in around 0-10 degrees, I can start to feel this myself, usually if I am not moving around which quickly raises my body temperature. My spasticity does seem to get worse and I also suffer from what may be an early onset of “Raynaud’s Phenomenon” (where smaller arteries narrow and restrict blood circulation usually affecting the hands and feet), which can be pretty painful. So it would seem that avoiding either extreme is key in MS. So obviously you want to try to stay in an environment with controlled temperature, watch the temperature of your beverages and food, be careful exercising (maybe stay by a fan) and use cooling products such as a cooling vest or a neck wrap.

So I have to say, when someone with MS complains about the heat it is not just a matter of preference, it actually does affect their health. Heat causes nerves to conduct electrical signals less efficiently, which obviously would affect someone with MS since their nerves are already conducting electrical signals poorly.

Extreme heat can be dangerous or even deadly to people without MS so for people with MS? It is very important to avoid! There are lots of little tricks I have used to stay cool and lots I still do that I did not mention here. What do you do to stay cool? What advice to you have for others that may help them survive the summer? Does the heat affect your symptoms or are you more sensitive to the cold instead? Share below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (40)
  • wendyy
    2 years ago

    In the summer when it’s hit and sunny I feel like jello nailed to a tree in the sun. In the winter I feel like rigor mortis has set in. Needless to say, I love fall in northern Michigan!!

  • DonnaFA moderator
    2 years ago

    Hi, wendyy! I definitely hear you, spring and fall are my favorite seasons. Many of our community members struggle with weather. You may find some tricks that work for you in the articles listed and conversation that follows.

    Thanks for being here! We’re always here to share information and support. -All Best, Donna (MultipleSclerosis.net team)

  • jackie5275
    2 years ago

    It doesn’t bother me at all, don’t be jealous folks, even with the way hot summer we’ve had in Michigan this year. When I was first diagnosed I thought it did, but it turns out I have anemia too. Lack of iron was dragging me down.

  • skcullers
    2 years ago

    Heat is frankly a bitch. (Excuse the language but……) I find even with air conditioning and staying inside feel worse. For those who cannot even afford aircondtioning please contact your local multiple sclerosis society as they usually have ways to get it for you. My physical therapist says anyone with an autoimmune disease is sensitive even to barometric temperature changes. I now am a firm believer.

  • Matt Allen G author
    2 years ago

    Yes, I feel like even if I were to stay in an air tight facility that was always 60 degrees, during the summer I would still not do well because summer time is when I feel the worst even inside! Drives me nuts! I don’t really get it…

  • Liliana45
    2 years ago

    I like your story, and I also experience MS related scare of straight sunlight beams and sauna/ steam room, etc…
    P.S.
    However, every Korean spa has
    Bathtub with giant ice cubes. ❄️

  • AJoy
    2 years ago

    I already have a very difficult time with fatigue, and don’t get around very well, so adding the heat into the mix is SO stressful. Plus, I have menopausal hot flashes that make the heat seem temporarily like a sweat lodge. Because I only have one air conditioner in the living room for the whole house, and I need to keep my bedroom closed at night, I’d found that 80 was a bit overwhelming to sleep in. Since I have the heat wraps and packs from MSAA that I can use during the day when necessary, I realized that I could also bring them to bed with me. Just like you might warm the bed with a heating pad in the winter, these cooled the bed, keep me cool enough to fall asleep, and once my meds take over I’m out, lol. If it gets too warm and they loose ice in the middle of the night, I can always trek to the freezer for their replacements, if I feel it necessary. 🙂

  • Matt Allen G author
    2 years ago

    The other day I used my cooling vest as a sort of blanket in bed because it was so hot! I unzipped it and laid it over me,

  • Nancy W
    2 years ago

    I generally seem to have less energy this summer, than last. The heat affects me, but not as much as you. If the air temperature is over 90, I avoid being outside. But, I love to swim, so staying in the shade and being near a pool or lake when it is hot, I jump in! This is when my handicapped parking tag comes in handy. I also use a neck wrap.

  • Matt Allen G author
    2 years ago

    The shade makes such a difference, direct sunlight on your skin seems to just zap the energy away! I wish I had access to a pool, sometimes I just fill the bath with cold water and even add ice if I have it because I just feel so overheated!

  • kkcurtis
    2 years ago

    I used to love the summer; the heat had absolutely no effect on me. When I was in the early years of my MS, it was the sensitivity to heat that changed my abilities. Now I am having just as much trouble with the cold and living in New England probably doesn’t help. My biggest problem is sudden changes in temperature; going from 90+ outside to an air conditioned dwelling will cause severe muscle spasms and pain. Still waiting to find that perfect place that is always 70 with no humidity, but don’t think I could ever leave Massachusetts anyway.

  • Matt Allen G author
    2 years ago

    With global warming and all the crazy weather changes I don’t think that place exists on this planet because if it did that would be an MS haven! I love 30 degree weather but when it gets colder I get really bad spasticity. I am super comfortable in 60 degree weather but once it hits 75 I have to start being careful.

  • Monk
    2 years ago

    Thanks so much for this article. I’ve stay close to the a/c this summer, not going outside. Last summer I was able to get into my car with a/c and get out and about, but this summer I hardly have any energy. Reading your story and everyone’s comments helps remind me that it’s not that I’m being lazy, it’s this disease rearing its ugly head.

  • Matt Allen G author
    2 years ago

    Yes, it’s NOT YOU, it’s this stupid disease!

  • DonnaFA moderator
    2 years ago

    Hi, Christine.3, thanks for reading and for sharing your thoughts. We want you to know you are not alone, many of our members struggle with the heat. We have a few articles that discuss ways to beat the heat that you may find useful. Check out Community Feedback: How to Beat the Heat with MS has some great tips from the community. And you may also like Tips for Managing The Heat With MS.

    We hope these help! -All Best, Donna (MultipleSclerosis.net team)

  • GN Glaser
    2 years ago

    Good piece! This really resonates with me. Heat is a huge problem. Even WITH the cooling vests and other cooling gear. I am forced to stay in the a/c for much of the summer. Otherwise, the fatigue, balance, vision all suffer. I am sick of taking naps. But I guess, all in all, I am fortunate it’s not worse. I can still walk and am happy about that.

  • Matt Allen G author
    2 years ago

    Yeah the cooling vests and A/C just make it suck less, they don’t eliminate the problem but if I didn’t have those aids I don’t know how I would survive!

  • DonnaFA moderator
    2 years ago

    Hi, GN Glaser! We’re glad that this article spoke to you, and very much appreciate your feedback. Thanks for being part of our community! -All Best, Donna (MultipleSclerosis.net team)

  • Deborah
    2 years ago

    I grew up in Palm Beach County, Florida and spent my first 64 years living there. I was diagnosed with PPMS in 2008. I recently moved to Denver, Colorado because I just couldn’t take the heat and humidity any more. Even though I lived directly on the ocean in Florida, many days I couldn’t even make the short walk to the water because of the blazing heat. Since Florida is hot most of the year now, I refused to spend my life quarantined in an air-conditioned condo so I made the move to Colorado. It’s been a fantastic decision for my health and happiness. Even though I arrived here last July and survived the summer with no AC, the lack of humidity made it bearable. The Fall, Winter and Spring were glorious and my health improved dramatically. I work hard to stay strong and healthy and the Colorado climate allows me to be outside most of the year. Even though it’s almost 100 degrees here today, I found a wonderful place to live with powerful air conditioning, a gym, pool and walking trail and I just get stronger every day! So grateful.

  • Matt Allen G author
    2 years ago

    I had moved to Highlands Ranch (30 mins south of Denver) for the same reason, then I moved to Colorado Springs, it was so much better in Colorado! I HATE that I had to leave, I was more than comfortable there!

  • Ruth T
    2 years ago

    Good to read everybody’s comments.
    My issue has always been COLD sensitivity & I was VERY tired of cold, snow, & ice. SO, I recently moved to Phoenix (family is here, location is not entirely by choice)& I’m mostly without AC. Had an attack, of course, as I was moving & for the next month. I was surprised to be too cold too often, at first. Then June hit & this extreme heat is getting to me & has caused a big increase in my constant itching & brain fog, etc. – I open all windows, keep air moving everywhere, & keep bags of ice on hand. I just ordered a supply of cooling products, vest, bandanas, etc. Also, realistically, I’m not expecting to get much done for the next 2 months, or so. The local MS support groups don’t even meet again til Oct. or Nov. – Just adjusting.

  • Wendy
    2 years ago

    Is there a reason you don’t have AC? I live in Phoenix and can’t imagine trying to live here with no AC. I do love that it is dry here, because having lived on the east coast for 40 years, I know the humidity is worse. I love AZ and wouldn’t trade the sunshine, but I do require AC!!! I’m sure that would help!

  • Matt Allen G author
    2 years ago

    If only there was somewhere we could all move that was the PERFECT medium haha, that place does not exist, -sigh-

  • Laura48
    2 years ago

    Oh, I soak my head in straight cold water too

  • Laura48
    2 years ago

    The heat just creates havoc with me. Not only do I experience extreme fatigue, I am extremely cranky too.

    This has been very hard for my husband( newly married) to understand so I am grateful for your story !!!
    Laura

  • Matt Allen G author
    2 years ago

    It’s hard NOT to be in a bad mood when you feel extra horrible!

  • LuvMyDog
    2 years ago

    I was born in June and have loved the sunshine and warm & hot weather for decades.
    Love it yes, but now as I get old, the heat is affecting me in a negative way more and more.
    And it’s not really the heat, it’s the damn high humidity that we have in New England, it absolutely knocks me for a loop. My energy level is just about at zero. That’s difficult for me as I have a lot to do on a daily basis.
    I have no one to help me so I do as much as I can, rest, do a little more and so on and so on.
    I hate cold weather but at least the cooler and cold weather that we get in our area allows for a little more strength and energy.

  • Matt Allen G author
    2 years ago

    I was born in June as well but I never liked it, I mean, I could TOLERATE it but not anymore but “at least” we have dry heat although this summer, early in the morning, it has hit over 90% humidity and THAT was horrible even at just 70 degrees! I felt like I could hardly breathe!

  • Ruth T
    2 years ago

    I, also, LOVED the sun & heat for decades. I didn’t associate that with my being born in June, before. Now, however, I’m new to the extreme heat of AZ. At least, it’s dry heat, here, but it IS extreme.

  • SuFuMu
    2 years ago

    As I spend considerable time on my laptop at the dining room table, I have a little battery powered (2 D-cells) fan with 2 speeds that works well to cool me down quickly. On Amazon, search for “O2COOL 5-Inch Portable Fan”. It is currently just $7, and worth its weight in gold. It runs a long time on 2 batteries.

  • Matt Allen G author
    2 years ago

    In my room, I sit in front of a big metal fan I bought from Home Depot that I put in front of my portable A/C, so it sounds a bit like your set up on steroids haha!

  • Erin Rush moderator
    2 years ago

    Thanks so much for sharing this, SuFuMu! I bet other community members will find this very helpful! Thanks again for sharing. Best, Erin, MultipleSclerosis.net Team Member.

  • Juli1358
    2 years ago

    Sorry to hear that everyone has so much trouble with the heat. I think of it as something to survive in the summer. Have made more than one trip to ER via ambulance due to getting overheated. A/c is my best friend. I have gotten so bad in the summer I had to go stay with a cousin in Maine (I live in Louisiana). Anything over 75 and I am uncomfortable. Lots of trouble with temps. I dress in layers and am constantly taking things off and putting them on. Have gotten so cold in normal temps that my teeth chattered. Thank goodness that is more under control. And, yes I am a total hermit in the summer. Also storms and barometric pressure change can put me in bed. Depends on how fast it happens. My secret weapon is raspberry snowballs. Even if I am in the heat, it cools me down enough to function (long enough to get home). juli

  • Matt Allen G author
    2 years ago

    Man, I can relate, as far as being super sensitive, but I do not REALLY have somewhere to go to escape the summer, no realistically in my case that is

  • Azjackie
    2 years ago

    Thank you for this important writing. Heat is so difficult. You are right that you can put more on than you can take off.

    I live in AZ and the sun can be absolutely scorching. Those living in heat and humidity I really feel for you. I have taken my temp during an overheating, it was 104. We all know that’s not good…

    A trick I like to use that is inexpensive, place a cold water dampened towel on either my head, neck, abdomen, or back under a ceiling fan or behind one. I then flip the towel over and over each time it feels as if it is warming. Your personalized evap cooler. I also have a habit of chewing ice from my cold glass of water.

    I also experience worsening symptoms from a building rain storm and change in barometric pressure.

  • Matt Allen G author
    2 years ago

    They have cooling wraps for your neck, same principle but the rag is much cheaper haha. Also, I tend to chew my ice as well even though they say it’s bad for your teeth, oh well!

  • joanee
    2 years ago

    OMG. Palm Springs would be called Death Valley if I lived there.

    Yesterday here in upstate NY (outside of Wiodstock), I think it was somewhere around 80 degrees but the humidity made my skin began to feel fluid.

    I am thinking about moving to Marine County where the temperature is more liveable and there’s NO SNOW!

    Thanks for your writing.

  • Matt Allen G author
    2 years ago

    Death Valley is just a bit hotter haha but yeah, if I could move I would but my health in no way would allow it right now, I miss the snow :/

  • potter
    2 years ago

    Like you I am a hermit in the summer, Kansas doesn’t get as hot as Palm Springs but it does get warm. The weather bureau predicted 20 days this summer of over 110 degrees. A couple of years ago our central air unit quit. It was under warranty but the company started making it difficult to have it repaired. We bought a window unit and put it our bedroom. We have a TV area in there so my husband would pick up dinner and watch TV. It took almost a month to get a new unit. If we lost our electricity for awhile we would just check into a motel that had some. Potter

  • Matt Allen G author
    2 years ago

    If the power goes out here I am screwed because I can’t drive somewhere cool… I am still working on an “evacuation plan” haha… I seriously want to buy a larger mini fridge and a microwave so that I never have to leave my room till October/November haha

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