A Hot Mess: Heat Sensitivity and MS

A Hot Mess: Heat Sensitivity and MS

Jennifer Silver LiningsI am a hot mess. No, really, I am a hot, sweaty, gel-pack-laden mess. My AC kicked it three hours ago; three hours before Orange County hit a record 112 degrees Fahrenheit. Mother Nature is drunk.

And I am getting warmer.

Heat is kryptonite to anyone with multiple sclerosis. Sensitivity to and intolerance of heat exacerbates our symptoms. MS causes nerves to lose their myelin sheath, making them more vulnerable to heat and temperature changes. Heat exposure can cause or heighten fatigue, numbness, blurry vision, tremor, confusion, imbalance, and weakness. This is a pseudo-exacerbation as symptoms typically dissipate once the body is cooled.

As my MS has progressed, so too has my threshold for heat. I am fairly certain I bypassed that threshold 30 degrees ago. As my cognition slows, so do my motor movements. My foot drop becomes more pronounced as I stumble into the kitchen for more gel packs.

I begin to grow fatigued and recall the symptoms associated with heat stroke. I drag my lethargic self into a cool shower. The relief is palpable albeit short-lived. Within an hour I find myself experiencing full-blown Uhthoff’s.

Uhthoff’s Syndrome is when changes in body temperature worsen existing MS symptoms. This temporary phenomenon reverses itself once body temperature lowers. I was able to mitigate my exacerbation with a cool shower. Once out, however, the elements took their toll.

So, what do you do when fearing an unexpected emergency? You prepare in advance.

Frozen gel packs will help to lower your body temperature. Keep several in your freezer and use them simultaneously. Place them on your forehead, the nape of your neck, wrists, and your upper thighs. Be certain to place a towel beneath the ice pack to avoid direct skin contact.

Join the MS forums: an online community of support for MS patients.

I have found cooling towels to be incredibly helpful. Once submerged then removed from the iced water, they hold their cool temperature for up to six hours. Furthermore, they are reusable and come in a variety of sizes depending on your needs.

Something I have not tried (but hear amazing things about) are cooling vests. Known to cool your core temperature quickly, these vests are a necessity for anyone extremely prone to heat sensitivity. While efficient, they can be expensive. Do your due diligence when shopping for one. Some organizations, such as the Multiple Sclerosis Society, offer discounts to those enduring financial hardships.

Staying hydrated is crucial to maintaining a leveled body temperature. Water is your best friend; drink up and often. Refrain from soda as it does not quench thirst. Alcohol has the potential to worsen things.

I cannot emphasize enough the importance of planning ahead. This is especially important in the summer months as our kryptonite is out in full force. Although it can be hard to miss out on summer fun, it is much harder to experience a heat-driven exacerbation. Plan your outings and social schedule accordingly. I head to the grocery store and do errands as early as possible. Similarly, I schedule appointments early in the day and not during a heat wave. In the event of an unexpected scorcher, I may cancel. Those who know me understand when these extenuating circumstances arise.

It has taken me quite some time to write this. My cognition is slow, and I have fallen asleep atop the keyboard more than once. I’m having a new air conditioning unit installed tomorrow morning. In the interim, I will do what I always do — stay grateful, optimistic, and fight.

Gel packs in place, a tall glass of ice water by my side with multiple fans blowing, I am Superman.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jennifer Powell BNS Writer
Jennifer Powell is a health writer and weekly columnist on Multiple Sclerosis. Jennifer imparts her hopeful optimism into real-life challenges facing the MS community. Prior to writing her column, Jennifer freelanced for several online periodicals including WebMD. When not writing, Jennifer enjoys volunteering with animal rescue, traveling and spending time with her Golden Retriever.
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Jennifer Powell BNS Writer
Jennifer Powell is a health writer and weekly columnist on Multiple Sclerosis. Jennifer imparts her hopeful optimism into real-life challenges facing the MS community. Prior to writing her column, Jennifer freelanced for several online periodicals including WebMD. When not writing, Jennifer enjoys volunteering with animal rescue, traveling and spending time with her Golden Retriever.

29 comments

  1. MSLynn says:

    What I have done is fill up the bathtub with coolish water, turn off the lights and live in the water for a few hours. I can do this because I do not have children at home.

    This technique got me through two summers of no air.

  2. Kim says:

    Thank you for this article. I feel your pain. I used to sun bathe before Ms diagnosis. Now just thinking about stepping outside in the scorching sun elevates my temperature. I’d like for people without Ms to realize “getting hot” really is different for people with this disease. It’s disabling. Jennifer I hope your new account works well for you.

  3. Sharon Jones says:

    I am so with you on this one. I’m in the UK, so our temperatures are as high as yours, but the current heatwave we’ve got at the moment is unbearable. I never realised just how bad the heat affected my MS until now. Thank you for the helpful hints, I’m going to start implementing them tonight.

  4. Deborah Swanson says:

    Superman, You are GREATLY APPRECIATED!! I live in Texas, where temperatures are scorchers. I had a 2:30 neuro appt. today that resulted in me immediately turning around and heading back home. I hit the shower, saturated my head with cold water and immediately got in front of a fan accompanied by A/C. The thermostat read 95 but it felt like 115. I called the neuro’s office and let them know, “It Ain’t No Way.” I will definitely use your tips. Please, don’t stop blogging? There are those of us who are listening.

    • Pam Rowgo says:

      Very good article. I know with me the Heat kicks my butt and it doesn’t do it gradually I’ll be fine no problems and then the next second I’m like melting no strength nothing I just want to melt like butter. I always enjoyed the sun like being out in the sun and everything and now between the Sun the heat and humidity I’m stuck in the house until it cools down another unfair thing with MS.

  5. Katherine says:

    I have tried and tried to explain to my coworkers- friends- family – neighbors, that although they are very hot, I am ready to self combust-I have PPMS- last week we broke a record and our temp reached an all time high of 118 degrees Fahrenheit. The next day our power was cut from 713 pm to 957 pm it was sooo bad for that 2.5 hour ! between the fans -water – cooling scarf and ice packs I made it through but unfortunately it took me almost 3 days to recover.. doesn’t SDG&E realize ?? They give me a discount for Medical for crying out loud… Looking forward to Fall … Thank you for sharing and allowing others to voice their experiences – Peace to you.

    • Senator says:

      Hi Katherine ; I have PPMS also and have started Ocrevus infusions. I had my first 2 1/2 doses in Sept. `17, then my first full infusion in March `18. I was not able to sweat prior to beginning O treatments, but now am able to. Never realized before starting O that I was not sweating, but now I am. It has helped me cope with the heat and has helped with not getting so tired out doing chores around house. There are other attributes to O, and it`s not the wonder drug we are all hoping for, but it is at least making this disease more tolerable. Good luck to all !

  6. Alan Weintraub says:

    A helpful product is called UCOOLIt. It is an evaporative neck cooler that uses metal near the skin and evaporative flanges that do not require freezing nor electricity.

    • Monica Kirk says:

      I have tried the neck cooler and cooling vest. Both did not work for me. The neck cooler was not effective enough and the vest, after a while felt like a wet bathing suit, heavy and unpleasant temperature. Crank up the AC!

  7. Phil Longford says:

    Avoid ‘Wellness Centres’. Early on, after diagnosis of PPMS, I foolishly thought the sauna, etc, would help the joints. No! My first sense of what was to come. Now, keep an eye on the weather. If heading towards 30, just plan a day in front of the fan.

  8. Norm St. Landau says:

    Swimming has been my solution. Since MS put an abrupt end to my running, i switched to lap swimming in cool lap pools.

    I find the lap swimming reliably quells my MS symptoms. And if you’re looking for fitness swimming is a godsend. 30 minutes in a lap pool at a modest swim rate can burn 225 calories while massaging and stretching my MS riddled limbs.

    A wonderful result is that the pool-cooled down effects carry over, for me, for at least 4-5 hours.

    Many a day finds me blurry-eyes and limping into the YMCA pool triggering empathy from the Y staff. And after I swim and walk smoothly out they marvel at what happened.

    Me too.

    Swimming has been great for me. It reliably takes my MS symptoms and helps me improve fitness.

  9. Janet Perry says:

    While it isn’t anywhere near as warm up here in the Bay Area, I’ve been through that all too often.

    I would add three other tips to yours.

    1. Buy one of those insulated metal commuter cups and keep it filled with ice water. Take it with you in the car. It will stay cooler and more liquid. Drink it often.

    2. Get bottles of water, drink off a bit, and freeze. They make a good addition to gel packs.

    3. Wear linen, best, or other natural fibers in lightweight clothes. Linen is significantly cooler than any other fabric. Yes, it wrinkles, but I find it is a HUGE help in the summer.

  10. Laura says:

    Symptoms do not always go away when getting excessively hot.
    I had an exacerbation directly related to getting too hot and permanently worsened a symptom. So, be careful, cooling off helps but it is possible to go to far, I did, now I am much more careful.

  11. Kenneth L Vermilion says:

    This site is extraordinarily helpful for individuals with MS and their support groups. Thank you for all you do. I wouldn’t be coping as well as I have been able to do without the dedicated work the staff of Multiplesclerosis News Today. Ken
    PS If only Multiplesclerosis wasn’t so hard to spell.

  12. Barbara O'Reilly says:

    Love your article! Me too. Before my diagnosis with MS, I thought I suffered so badly from the heat because I’m so fair and freckled and had Malignant Melanoma(skin cancer)twice. When I moved, my sister threw out all my cooling equipment — except the vest. It’s of no use without the ice packs…. She doesn’t have MS, so she has no clue. Best for me now cooling packs around neck, wrists, and even tummy. The MS Foundation in Florida also provides free cooling equipment. Have a cool day everyone! Barbara O’Reilly

  13. Cyndi says:

    Thanks for your article. I have frequently described to friends that sunshine and triple digit temperatures are “my kryptonite” – it is absolutely the best analogy I can give to the total physical melt down experienced with heat induced exacerbation – remove the kryptonite and I’m me again in an hour. I’ve looked at but haven’t tried the cooling towels yet. With a good 2 months left for Texas summer temps, I’m off for some on line shopping for the product. Be well…be cool.

  14. Amy Grindstaff says:

    This was a great post. ANOTHER TIP: POPSICLES AND OTHER FROZEN ITEMS like sherbet, ice cream, etc. Helps cool you down from the inside/core.

  15. Suzy Fivecoat says:

    Well I too suffer worst in the heat but I now also have horrible hot flashes to boot. I suffer from MS, IBS-C, a twisted spine from scoliosis and THEY are the only condition that brings me to tears. They seem to exacerbate EVERYTHING. (Not sure what Hell feels like but I’m guessing this is pretty close.)

  16. Debbie says:

    All of these posts were very helpful.
    Just diagnosed last January.
    I didn’t realize how bad the heat would hit me. I was waiting in line for an event at 5:00 in the afternoon last week, and then outside for a while. Needless to say, I’m just starting to feel better after a week.
    Thank you!

    • Emily says:

      After a week? That’s somewhat comforting to know, as my heat-induced symptoms are taking a tad longer than a day to go away as well!

  17. Emily says:

    I’m 23 and was just diagnosed with MS about 3 months ago and we’re currently in the middle of a heatwave- I’ve had a grainy right eye for about three weeks now! It flares up at the hottest part of the day and subsides in the evening, and it vanished completely a couple of times and then goes grainy again the next day. I’ve checked with my nurses and doctor FOUR TIMES because I was so anxious haha and they confirmed it’s probably a heat related issue. Is this something I can expect to have for the whole summer??

  18. Kim H says:

    When I get over heated, it causes a specific response that lasts 24-30 hours no matter how many cool baths I take. I sweat and vomit like I am dying for at least a full day after getting over heated. It was 104 here the other day and I am paying still 3 days later. I note that everything online says once you cool down, you are fine. That doesn’t work for me. My neuro though says it is definitely heat exacerbation. I usually go get an iv bag of fluids when I can make it out of the house again and it helps me recover. Just keep this in mind if your symptoms last longer.

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