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Myelin melting from the heat and dripping into a puddle.

For Our Family & Friends: MS, Heat & Humidity

When I think about my life with Multiple Sclerosis, I often consider how much easier my life would be if there was a greater breadth of knowledge about the disease amongst everyone around me. If people knew a bit more about the disease, life would be better, not only for myself, but for my friends, family, and coworkers as well. A little bit of knowledge can go a long way. With that in mind, I’ve endeavored to create a few articles with some basic information about the disease and how it affects us. My hope being that these can be shared with our family and friends to allow them to better understand what’s going on with us. As I’m writing this first one in the middle of a crushing summer heatwave, I’ve decided to focus this first piece on the effects of temperature and MS.

MS basics

Heat and high humidity can cause a temporary worsening of our symptoms. With MS, the disease causes our own immune system to attack a substance called myelin surrounding our nerves. Myelin acts as insulation for the nerves throughout our body. This insulation helps the electric signals our brain is sending throughout our body to travel at a steady speed. As our immune system eats away at this lining, we begin to have problems with the signals our brain sends. They no longer get where they are going in a fast enough time (or even at all). Our nerves are the way our brain communicates with the rest of our body, so there are many possible ways this kind of damage can affect us. Example: our brain tells our foot to lift when walking, but if the myelin on the nerves that connect the brain and foot are damaged, that signal may not get there in time. So instead of lifting my foot, it stays in place or doesn’t lift high enough, even though the rest of my body is still performing all the actions needed to walk. This ends up with me falling. If the conditions are right, that signal may still make it on time, despite the damage (it’s like a frayed phone charging cable, it may still charge your phone if it’s in the right position, but move it slightly and it won’t work).

Temperature, humidity, and heat intolerance

This is how temperature and humidity come into play, they worsen the conditions for that signal to get where it’s going because of that damaged nerve. This is believed to happen because heat and humidity affect the nerve’s ability to properly conduct electricity. That insulative layer that gets damaged usually protects against this issue, but as it gets damaged and eaten away, the ability of the nerve to conduct electricity consistently and efficiently is compromised.

It doesn’t take much

While this is a huge problem on hot and humid days, the reality is, it doesn’t take that big of a change for this to be an issue. Even the slightest increase in body temperature is enough to start causing problems. By slightest, I mean as low as one-quarter to one-half a degree increase in body temperature. It really depends on how damaged the nerves are and where they are located. Think about some of the times your friend or family member with MS started to have issues, maybe they didn’t fall, but they acted differently, or suddenly had to leave somewhere or cancel plans. Was it a hot day? Was it wintertime, but in an overly heated room? Was it as a gathering that had a lot of people (groups of people close to each other produce heat, parties tend to get warm after a while)? After a few decades with the disease, I can usually tell when my body temperature raises a half-degree or so, then I know I need to cool off, but not everyone is able to notice that difference, especially early in the disease.

It’s temporary

The good thing about this issue is that it’s temporary. Typically, if we can get our body temps cool again, we will return to normal. However, it doesn’t always happen that quickly. Even if it does, it can be a pretty trying and exhausting experience, one that may require us to rest.

Cold can affect MS, too

While hot temperatures and humidity are often the most talked-about conditions, for some people with MS, the cold can also cause problems with the way their damaged nerves conduct those electrical signals. Another important thing to note here, you can still have high humidity even when it’s cold. Some of my worst days have been when the outdoor temps would be considered perfect for some, but the high humidity left me a wreck.

It’s awful

Finally, I want you to know how awful this can be for so many people with MS. While it may seem trivial to most, an increase in heat and humidity can be devastating to someone with Multiple Sclerosis. It can cause every issue we’ve ever had with MS to suddenly come to the forefront. Blurred vision, burning nerve pain, confusion, numb/weak limbs, intense spasms. I can honestly say, there have been times when I’ve been too hot and wanted to kill myself because of the way it made me feel. That’s not a trivial thing to say. Prolonged time in the heat can cause some severe issues as well. So severe, that there are reports of it killing people. You simply can not underestimate the danger of temperature and humidity changes for those with MS.

I hope I’ve helped illuminate how increases in heat and humidity can affect those with Multiple Sclerosis, please consider this information when dealing with your loved ones. They aren’t just hot, they are having legitimate issues that should be taken seriously.

Thanks so much for reading and as always, feel free to share!

Devin

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Editor’s note: Temperature and heat in the summer can take a physical and emotional toll on those with MS. If you or someone you know is struggling, please know that there are many resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat, and the MSAA toll-free helpline (800-532-7667, extension 154) and online chat.

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

  • Yoshitail9
    1 week ago

    Devin
    I love spaghetti but not when it’s my legs because of the heat and or humidity. Also if I were to get a fever and my body temperature rises my legs know it instantly. Another great article. Thanks

  • Hannah
    1 week ago

    Appreciate your posts, Devin. They portray a valuable sense of raw reality to me that, as a newer MSer, I think is truly important. Thank you for taking the time to share. You are a great writer. Look forward to your next post.

  • chong61
    1 week ago

    Devin,
    You put this in plain language anyone should grasp the meaning of heat and what it does to us. Now, we just have to find family or friends that will read this and finally understand what MS does to our bodies. Sadly most will just read it and say oh I understand and that is their only grasp of what you explain.

    I love baseball and one of my children said she wanted to take me to a Rangers game and I thanked her and said I just can’t honey. She then tells me she can get a wheel chair and roll me right up the ramps so I can see. She forgets I have MS and also Glaucoma. Not blaming her, she is just trying to do something special for Mom. Which then makes it hard for me to launch off about MS and heat again.

    I just hope someday I can talk with one of my children and not mention MS. Probably will never happen. I know they all care, just don’t understand and no words will ever make them understand. I am so fortunate to have three children that love me and show it daily. But, when they say how are you today Mom, I don’t know if I should say I am good or do I keep going over again as to how my MS is that day.

    Good article and I love your writings, they make it truthful and it lets me know I do have people that understand. Thanks, I look forward to other articles you are going to write.

    Arvilla

  • 20qv8sx
    1 week ago

    I discovered the Thermapparel Undercool Vest in Summer 2018, and it has changed my life! It goes underneath almost anything. I wear it indoors & out, both Summer & Winter. Even wore it under my Mrs. Claus dress with my hubby Santa at a Christmas event!

  • Shelby Comito moderator
    1 week ago

    That’s fantastic @20qv8sx! We actually partnered with Thermapparel the past two years in a row to give away these cooling vests after hearing positive review from our community members (you can check out the giveaway here if you’re interested: https://multiplesclerosis.net/living-with-ms/giveaway-awareness/). Love the idea of wearing it under a warm costume at potentially warm events – thanks for sharing your tips and helping others here!
    – Shelby, MultipleSclerosis.net Team Member

  • Bayoubaby
    2 weeks ago

    Thanks! I live in Mississippi, where summer is 6 months of 90s and very high humidity.
    BUT, down here everybody goes from one place with AC to another. The poor souls working outside start at dawn, out by 3, with breaks and liquids. My husband worked in shipyards, inside of a ship temps hit 140° with 80% humidity, men died. His last year, 6 men died in 90 days.

    Anyway, I travelled to Vermont for sisters wedding. Summers there always had 3 or 4 really hot humid days, but this year, was 9 days in a row, breaking cool the day we left. No AC anywhere!!! I ended renting hotel room to survive. I didn’t have official MS DX yet so family was kinda scoffing me off as over-reacting, melodramatic, using inhaler, kinda out of it. Wedding was outside, I sat in car for it.

    My DX is in, apparently they missed an opportunity to catch it by follow up MRI as recommended in 2007 after a concussion.

    My husband doesn’t want to talk about it, maybe your article is short and sweet enough-keep it up!

  • Sonja51
    2 weeks ago

    On extra hot days it feels like my brain is cooking inside my skull too….I get bug crawl sensations in my scalp, arms and legs. I do alot of ice packs and cold towel wraps to my whole neck, face and different areas of my body for pain, which helps.

  • Debbie
    2 weeks ago

    Exactly! Well written so that others might get a glimpse of what we go thru. Unless you have MS you cannot totally understand.
    I read and share all your articles, thank you for sharing this wonderful talent.

  • Sonja51
    2 weeks ago

    Almost ever summer I am hit with trigeminal neuralgia…I’m going through a wave of it right now…this is like week 3 that it has plagued me. I have to guess that this summer heat is contributing to it or causing it to spark. Off and on it has been a dull ache to, to feelings of electrical currents of sharp pain in my left jaw. Running fans and my air conditioning doesn’t make it any better but is much needed because it is soooo hot at times in Southern California where I dwell. I have to do natural remedy for it pain wise because I’ve been having nothing but allergic reactions and seizures to prescribed meds and over the counter meds. smh

  • Legsonstrike
    2 weeks ago

    Devin you really helped open the eyes of some of my loved ones on this article, I pray you continue to write and help others as you have helped me!! You’re the best!!!

  • Devin Garlit moderator author
    2 weeks ago

    Thanks SO much @Legsonstrike, I’m very happy to hear that!!!

  • Lucinda012
    2 weeks ago

    I truly hate the heat as well. I’ve started walking again after years of not being able to but now I definitely know that if the temperature gets any higher 20 or so my legs just stop working!

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @Lucinda012, I have the same issues with my legs!

  • juliastewart
    2 weeks ago

    Thanks for this overviews and opinion piece. Heat and humidity does not affect me this way at all which I feel speaks to the individuality of MS. It is different for everyone. I find in the summer when enjoying the sun being near or able to get into water is so helpful a great way to stay cool and get some exercise.

  • Toon-Keesee
    2 weeks ago

    I wear an ice vest, neck wrap, wrist bands, etc. I get a LOT of looks in line for the bus. I am tempted to stencil “Medical Cooling Vest” on the back. I wish it was easier for others to understand how bad the heat can make me feel.

  • Sonja51
    2 weeks ago

    Toon Keesee…..If it works for you and makes you feel better, who cares who looks and or stares…I’m thinking unless one ask you don’t have to give an explanation to anyone.:)

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @Toon-Keesee, I know those looks as I use a cooling vest often too!

  • georgi54
    2 weeks ago

    Going out in humidity really affects me as well as the cold weather. It’s so hard to find a happy medium that I stay inside a lot in a controlled atmosphere, which includes sitting on a heating pad most of the winter.

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @georgi54, humidity is such a big problem for many, regardless of the temperature

  • April101
    2 weeks ago

    Thank you for this.
    When we talk about the weather here and humidity comes up I often say that because of my MS I have a hard time functioning. This is often met with “me too”. Just this week I started thinking maybe I am making a bigger deal than I should, but NO! I’m not looking for sympathy, my body is different.
    Good article.

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @April101, ugh, the dreaded “me too”, that’s the worst. Hopefully sharing this will help them understand a little better.

  • Velikova
    2 weeks ago

    Best article I have read on the topic. Its 38 degrees here … and the last 3 days are very hard for me especially when my family can not understand how I really feel… I’m going to translate it and share it with them. Thank you, David! I appreciate your article and found it to be (not very useful) but exceptionally useful. Take care!

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much @Velikova, I appreciate that very much!

  • Legsonstrike
    2 weeks ago

    Another SpotOn article Devin!! This will make interesting topics for the summer!! I always share what you write and call my parents to read what you posted and let my husband read it because you explain it much better than most of us can!! Thank you again!!

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @Legsonstrike, I hope it helps explain to them what you are going through!

  • Legsonstrike
    2 weeks ago

    It is what WE are going through and I truly think about you every morning when I get up just so I can see what you wrote about today!! You have been a life saver for me and my husband!!

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