MS and the Battle Against Fluctuating Temperatures

MS and the Battle Against Fluctuating Temperatures

It’s a brisk late winter evening as my wife and I join friends for happy hour at one of our favorite local watering holes. As we sit and greet our friends, my wife gives me that look. That look that says, “are you too hot?” I give a slight head shake indicating no, as, using my shirt sleeve, I try to casually wipe my brow of the now excessive amount of sweat that has built up on it. The whole time I hope our friends don’t notice, that despite it being frigid out and not wearing a coat, I am still already overheated and sweating in many more places than just my brow. This type of scenario plays itself out almost daily, as I deal with one of my disease’s most common problems, temperature sensitivity. For many of us suffering with multiple sclerosis, adapting to fluctuating temperatures is a full time job. The slightest change in our body temperature can wreak havoc on us, pushing symptoms that may seem dormant right to the forefront.

It is somewhat common knowledge (in as much as anything MS-related can be considered common) that those suffering from MS have problems dealing with warmer temperatures. There was even a time not long ago when those suspected of having MS were put into hot baths to determine if they had the disease. This worsening of symptoms due to an increase in temperature is often known as Uhthoff’s Sign, named after a German ophthalmologist who noticed the worsening of vision when those suffering from optic neuritis, a common MS symptom, had their temperatures raised. It is believed that this happens because demyelinated nerves have increased problems conducting electrical signals. That is why we see prior symptoms come forward; those areas that have already been damaged are the ones at issue. The good thing is that, typically, if we bring our temperature back down, the symptoms will subside again. Many with MS, myself included, will go to great lengths to avoid the heat because of this.

Avoiding warm temperatures can be hard. In the summertime, when everyone is hot, it’s easy to rely on devices like cooling vests or to try to stay in an air conditioned room. But what about when it’s hot for us and not those around us? For me, the winter time can be very hard because most places are heated. I’d be better off wearing shorts and a t-shirt everywhere during the winter, but that looks a little weird. Still, I try to dress in light fabrics, because I know most places I go will have the heat cranked up. No matter how I dress though, if the place is too warm, I have to leave.

While the dangers of warm temperatures and MS are talked about often, cold temps can be an issue for those with MS as well. Many experience a worsening of symptoms when they are cold, particularly with regards to spasm and pain-related symptoms. I’ve spoken to many an MS patient that rely heavily on bundling up to keep these issues from jumping to the surface.

Avoiding extreme hot and cold temperatures is a way of life for many suffering from multiple sclerosis. However, what I have been noticing the past few years, any swing in temperature seems to cause some issue. The story I started this article with, how I broke into a sweat not long after stepping inside, that wasn’t necessarily because it was very warm in there, it was because it was a few degrees different than what I had been in. Sometimes, a couple degrees swing is all it takes for me to start having symptoms show. I shook my head no to her in that story, not because I didn’t want to draw more attention to me, but because I knew my speech would be slurred if I spoke. Typically, if the temperature swing is small, I just need time to adjust, and then I will go back to the way I was, however, that is not always the case. This is one of the more annoying issues I have and it’s one I can’t even escape in my own home. No matter what we do, some rooms are still different temps than others, so just switching rooms in my own home can at least temporarily give me slurred speech, vision problems, pain, spasms, and arm and leg weakness. Many times when I fall in my own home, it’s because of this very issue: I’ve warmed up slightly and my legs don’t work anymore. We still try, to keep the house at a pretty constant temp though. It’s a necessity that becomes costly, relying on both the heater and air conditioning much of the year. We don’t really have the luxury of letting the house come up or down to a temperature slowly.

Having problems with temperature changes means that the spring and fall tend to be the worst times for me. Where I live in the mid-atlantic area, temperature and weather conditions can fluctuate a lot during those seasons. Being cold one day then hot the next really causes me problems. My wife even looks at the weather and laments when she sees there will be rapid weather changes. I should also note that most of my full relapses have occurred during these transitional seasons. This doesn’t exactly fit into the “only prior symptoms are affected” theory, but I suppose it could all be coincidence too. In addition, it has always seemed interesting to me that the only sustained near symptom-free stretch I’ve had was when living in a very steady climate out west.

So how can we deal with these temperature sensitivity issues? For warm temps, cooling devices are very helpful. To battle the issues arising from cold, dressing properly can be very important. But dealing with the small increases and decreases that we encounter daily, in any season, can be very tricky. As much as we try to keep a consistent temperature, whatever we do, it’s not really going to be 100% effective. Knowledge is power though, and the more people that we can get to understand our problems with temperature sensitivity, the better off we’ll be. It’s important to share with our family and friends that temperature swings can be problematic to us. As always, I’d love to hear from others that suffer from temperature issues so please feel free to comment. As a community, together, sharing ideas, is when we are our strongest!

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)
  • Stephanie J
    4 months ago

    Thank You for drawing attention out about temperature changes and how it really affects us living with MS! I struggle with humidity many days. I feel fatigued, nausea, weakness, and almost I get a feeling like I have a stomach Flu. I know now after 25yr little tricks but it affects my life extremely. When it’s cold I’m always cold… My body seems to not regulate my body Temperature at all anymore. My husband is wonderful and always makes sure I’m as comfortable as can be God bless. Hopefully I’ll get out west to that better climate you mentioned? My doctors Told me I should try it becauseit’s better for MS patients and our symptoms… Take care

  • Devin Garlit moderator author
    4 months ago

    Thank so much for sharing StephanieJ! I think this summer has been exceptionally brutal to many of us!

  • cablackbear
    1 year ago

    Each time I try to post a comment I get overheated and have to stop! I’m an older woman, but I hope you can have some empathy to my particular issue (something my male MS specialist did not have). I have frequent and extreme hot flashes (I cannot take hormone-related therapy). During the warm months or in a warm room, I have what I call Meltdowns. My vision gets blurry, I have trouble thinking and talking, I have loss of coordination and trouble walking, etc. I must seek a cold place immediately. All common symptoms of MS-related heat intolerance (which I have even without hot flashes). This is literally debilitating. Hot flashes make MS symptoms worse and MS makes hot flashes worse! I want to voice this issue and invite feedback from others who experience this.

  • portega13
    2 years ago

    Hot weather plus humidity even inside of my home with the air conditioner on, will result most of the times canceling plans including indoor activities as light cleaning. This over these years since my diagnosis in 2013. I learned to cope. But I’m still struggling when the change of weather occurred meantime we are already out of home. And it doesn’t matter how many times I checked the weather channel. The weather is still unpredictable. Getting overheat will start with needle pain that will get worst if I don’t get cooler fast. Being in a family or friend reunion is hard. People try to console me hugging me and made my pain wost that at any kind of contact, is like the needles get into my skin. Most of the times my husband and I needed to suddenly leave sometimes without even having the chance to say properly good bye to everybody. I will never wish for anyone to suffer like we do. I just wish for them to understand that is something out of my control that “looking good” is something that could change as the weather changed. Thanks for sharing your histories. Help me to learn from you and to confirm that is just part of my new life.

  • CarrieAnn84
    2 years ago

    I find my body always feels cold even when it’s warm inside, which leads me to add extra layers of clothing or blankets. Then when my body finally feels warm I start to overheat. It’s a constant struggle to be at a comfortable temperature. In the summer months, living in the northeast, I will have the AC on when it’s in the 90’s outside, then I feel cold so I shut it off and then I get so hot I can barely walk. It really is a never ending battle to be at a perfect temperature when you have MS, and people don’t understand this aspect of the disease at all, they just think we are being complainers. Extremely frustrating! Thank you for this article, it helps to know I’m not alone in this struggle!

  • cablackbear
    1 year ago

    You are definitely not alone. I can’t regulate my hot and cold temperatures either.

  • Devin Garlit moderator author
    2 years ago

    Thank you CarrieAnn84! You most certainly aren’t alone! I have had times, especially lately, when I don’t realize the actual temp and then I find myself over heated or too cold. It’s extremely frustrating!

  • tmbowers
    2 years ago

    I have major issues with feeling cold and getting such a deep chill that it takes forever to get warmed up. However, when I am in bed and get warm enough to fall asleep, I feel like I sweat all night long. It’s awful!

  • mccabetp
    2 years ago

    I have more issues with cold than heat. The other variable is humidity….

  • cablackbear
    1 year ago

    Definitely humidity too!

  • Devin Garlit moderator author
    2 years ago

    Thank you mccabetp! I’ve met many who say the same as you that cold is their biggest nemesis! Ugh, humidity is a massive issue for me as well!

  • saddison
    2 years ago

    This resonates with me soooo much. I am secondary progressive with very aggressive disease and multiple autoimmune diseases and co-morbidities. Most recently, an MS relapse gifted me with a temporal lobe enhancing lesion which gave me partial complex seizures which were life threatening and hospitalized me for six weeks. The seizures have been more debilitating than any relapses I have had over the past 40 years. During this time, my feet and legs, up to my knees, feel like they are in a snow bank. They are discolored and feel cold to the touch, left greater than right. For this I need a heated throw. Even with the heated throw, the backs of my legs remain frozen. My actual temperature remains low, usually in the 95 degrees F. range. From the waist up, however, I am over heated, and will get hot enough to sweat. I keep a fan beside me to cool my upper half. I have a room thermometer nearby, and have noted that as few as 2 degrees difference in room temperature effects how I feel. I have learned that as ridiculous as it sounds, it is possible to be both hot and cold at the same time, and for one limb to be a different temperature from another. Years ago, I had an enlarged parotid gland removed, developed scar tissue, and experienced gustatory sweating (Google it). Fast forward many years, and I now have the re-appearance of that symptom. My neurologist says these are all signs of dysautonomia. Anyone else have such issues?

  • cablackbear
    1 year ago

    Yes. I can be hot and cold at the same time with different parts of my body.

  • Devin Garlit moderator author
    2 years ago

    Thank you saddison! Always sorry to hear someone else experiences this, but it is comforting to know I’m not alone. Seems this is a much more common issue than most people think. Many people know that warm temps can be rough, but few realize cold can be problematic too, as well as just a couple degree swing! Thanks so much for sharing your experience!

  • skcullers
    2 years ago

    P.S. Thanks everyone for sharing. Sometimes think am going nuts!!!

  • skcullers
    2 years ago

    Finding now the cold as well as heat factor in. So agree too now Spring and Fall are trouble ahead times. On top of that was told too that we with autoimmune problems are even sensitive to barometeric changes. As if life isn’t complicated enough.

  • Devin Garlit moderator author
    2 years ago

    Thank you skcullers for reading and sharing your thoughts! I’ve been meaning to track my symptoms alongside barometric changes, because I’m pretty sure that is an issue for me too!

  • cabotsmom
    2 years ago

    I am in Norfolk, VA and the awful thing for me is that I stopped sweating years ago so the temperature gradient is even worse for me. My husband has PRP (something new for him but his will pass) so he is always cold and me I could wear a bathing suit all year long. He loves the hot tub and doesn’t understand my trepidation so I go in for a few minutes and then sit out in the cold (when there is cold) and then do the drunk walk the rest of the night and have trouble falling asleep as he likes a heavy comforter and me – no covers would suffice. I SO get your post and know I am not alone but seriously I haven’t owned a winter coat in years and when everyone here is in Uggs and heavy coats I’m in a sweatshirt and jeans with tennis shoes and no socks so I won’t overheat and still I get hot. So here’s to just one more wonderful side effect of this nasty disease and, like Lauren, I have just stopped explaining to everyone and just think how much I save on not buying deodorant LOL.

  • DonnaFA moderator
    2 years ago

    Hi Cabotsmom,

    Thanks for being here and for joining the conversation. I empathize, I am always hot. Just a thought that may help you get a bit better sleep, Have you ever checked int the cooling mattress pads and blankets they have now? I think they even have blankets that can be cold one side and hot the other so both you and your husband can be comfortable. -All Best, Donna (MultipleSclerosis.net team)

  • Lauren
    2 years ago

    I have this problem everyday. Paducah,ky is extremely humid and temperature is constantly changing. It’s so hard to get people to understand what I’m going through. Many think I’m just exaggerating.it is extremely annoying. So I just stop explaining. But yes temperature is daily struggle for me

  • Devin Garlit moderator author
    2 years ago

    Thank you Lauren for reading and sharing your thoughts! Hopefully sharing this articles with friends and family will help explain what temp changes do to us!

  • CharZ
    3 years ago

    I get the same way with swinging temps. I live in Northern Wisconsin where this time of year is a killer on me. We have days in the 60-70s and nights go to the 30-40s. I actually had to put on my cooling vest last week at my SS Disability hearing because the room was so warm I was sweating, outside it was only 50 out. When we go anywhere I take my vest with,I do the same as your light fabrics, shorts in the winter. One thing that doesnt help me with staying cool is that I wear KAFO braces that cover 80% of my legs.

  • Devin Garlit moderator author
    3 years ago

    This time of year is definitely the toughest for me, similar to you, the temps swings between day and night seem ridiculous! And no place I go seems to be properly cooled this time of year! Thanks so much for reading and sharing!

  • Devin Garlit moderator author
    3 years ago

    Thanks for commenting with some of your tips! The more we all share info like this, the better off we will all be!

  • thumper
    3 years ago

    The changing of temperatures is Definately a Huge issue for me. Having Iced Bottled Water is Essential! Also I always keep Popsicles that have a consistency like a Creamsicle. If you are totally fatigued from the Heat where you feel it takes Everything You’ve got to “Open the Refrigerator” this will Quickly “Bring you Back”! On top of the fun with the temperatures I get Flushing from my Techfidera! So I don’t even know how I’ll be able to Handle the Humidity this Summer. Oh I forgot to mention being Pre-Menapausal!! I call M.S. Multiple Suprises!Just Stay Pro-Active and it will be OK.

  • thumper
    3 years ago

    What Great Timing! I live in Ohio and we just happened to have some Extremely Great Weather this Weekend. So I had my Grandkids and we went outside and played and Got the House ready for Summer. All day I was Fine? We went to bed that Evening and I woke up Immediately heading for the Ceiling Fan! Ok thats on-Then fumbling to open a window,Not succesfully I was So Rubbery in my legs I could Hardly Walk! I plopped in a chair and Demanded Cold Ice Water Fast! My Husband knows already thats a Code Red! He sprang into action. I now had Ice Water and a Cold Pak for my Neck! I could’nt Believe how I reacted to a small Change of Temperature. These are things I always have Close by. And my Family knows the Signs.Although during the day I did’nt think I was Hot? I Always carry Cold water when Traveling or going for a ride. Polar Pops work Great when I’m outside with the grandkids. But out of Nowhere is making me wonder how I’ll handle this Summer? How do other people still enjoy Outings? Please Share!

  • Devin Garlit moderator author
    3 years ago

    Thank for sharing! Summer can be a big challenge for me. I rely heavily on my cooling vest and ice packs, even if I don’t think it’s going to be hot. I’ll put ice packs in my pockets sometimes if we are going out, even if I’ll be indoors. It’s still tough though!

  • JULIE SAVENE
    3 years ago

    How can I have freezing toes and be hot everywhere else?

  • skcullers
    2 years ago

    I have an ice cold left leg. The doctor explained it was blood circulation with MS but not deel so not to worry.

  • thumper
    3 years ago

    I have this also and my doctor called it Renaulds Phenonomenum! My hands are cold too but my feet are like Ice.

  • Devin Garlit moderator author
    3 years ago

    It’s interesting you mention this because this is happening to me right now and happens often. It really is the weird thing. I can be super hot, soaked in sweat, and yet my toes feel like ice, painful ice too.

  • Mare
    3 years ago

    It is even worse once menopause hits as well. I am so HOT during the night I usually only get a little over 4 hours sleep a night and then work a full day when I am very tired. Oh well, nothing can be done other than wait another 7 years when hopefully the hot flashes will be over with — usually 10 years total. Can’t take the hormone replacement for a myriad of reasons. Good luck ladies!

  • cablackbear
    1 year ago

    News flash! Some of us never get rid of hot flashes! And so says my doctor. My 10 years are past and I have them to the extreme!

  • Azjackie
    3 years ago

    Say it isn’t so! I am perimenopausal (whatever that means). I have hot flashes in a 50 degree room at night.

    During the day I enjoy 65 degrees throughout the house. I am able to feel a temp change throughout the day. Errands are during the morning.

    I’m a mess day and night. I melt snow and I am feverish in rain. Don’t get me started on the change of barometric pressure, I stagger and fall. My family and boyfriend look at me like I’m drunk.

    What an evil “gremlin” MS is!

  • Devin Garlit moderator author
    3 years ago

    I’m glad I don’t have that particular issue, but my sympathy is certainly with you ladies!

  • Azjackie
    3 years ago

    I find difficulty like you both indoors and outdoors. With the heat I feel exhausted and dragging. My walking is severely affected and that leads to falls. For me cold is the answer. If I am going somewhere hot I take a frozen bottle of water to keep me cool. As I melt the ice I have a cold drink. I find for me cooling internally just as important as externally.

  • Devin Garlit moderator author
    3 years ago

    Keeping cool can definitely be helpful. I rely heavily on a cooling vest during the summer!

  • potter
    3 years ago

    My heat problems aren’t as severe as yours but I still have to plan my day around them. I won’t spend time at my mother in-laws, she keeps her house 10 degrees warmer than we do in the winter and summer. I wear sandals in the winter unless it snows and wear a light jacket. The summer is just a mess, I usually try to be inside by noon. When I was diagnose my neuro told me to stay away from hot baths and heating pads. Hoping for a cool summer. Denice

  • Hot and bothered
    2 years ago

    Interesting! I haven’t considered sandals Devin suggests below. Thanks.

  • Devin Garlit moderator author
    3 years ago

    I actually wear sandals a lot during the winter too. Some folks look at me a little weirdly but it can really help maintain some coolness in hot situations.

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