A Hot Mess: Heat Sensitivity and MS

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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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.

Comments

MSLynn avatar

MSLynn

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.

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Kim avatar

Kim

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.

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Simone avatar

Simone

Thank you for this article...and comments.its a comfort to know there's people who understand. I've tried to educate loved ones but they don't understand.
I miss being able to go outside get some sun,garden be around horses etc.
When it gets HnH...my body shuts down. I have it on my trigeminal nerve on the left side of my face. It's misery. GodBless those who are with me fighting the good fight.

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Sharon Jones avatar

Sharon Jones

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.

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Emory Smith Jr avatar

Emory Smith Jr

I feel you wholeheartedly on that, the summer time has my symptoms running haywire. Torso cooling belts are very helpful as well as the cooling hats.

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Deborah Swanson avatar

Deborah Swanson

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.

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Pam Rowgo avatar

Pam Rowgo

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.

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Katherine avatar

Katherine

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.

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Senator avatar

Senator

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 !

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Steve Bair avatar

Steve Bair

At least you can walk : )

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Carla avatar

Carla

That doesn’t help. ALL MS symptoms make life much harder. I suffer from PPMS and have terrible fatigue. There are many days that I can’t walk due to this. I try to stand up and fall back down. I try to talk and sound like I’m on some kind of drug or extremely drunk. We don’t need to compare who has it worse. That does no good. Let’s lift each other up. I hope you can enjoy life, even if from a wheelchair.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Carla,

Your words to lift one another up are so valued and heard. I appreciate your taking the time to write.

Kindly,
Jenn

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Alan Weintraub avatar

Alan Weintraub

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.

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Frances Robson avatar

Frances Robson

Alan, did you type that correctly? Just did a search for UCOOLIt and nothing comes up.

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Monica Kirk avatar

Monica Kirk

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!

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Phil Longford avatar

Phil Longford

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.

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Norm St. Landau avatar

Norm St. Landau

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.

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Janet Perry avatar

Janet Perry

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.

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Laura avatar

Laura

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.

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Marshall avatar

Marshall

What were your symptoms of going to far? I pretty sure I too have have pushed a little to far. Rrms 32 years here

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Kim H avatar

Kim H

Great advice Laura!

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Kenneth L Vermilion avatar

Kenneth L Vermilion

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.

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Barbara O'Reilly avatar

Barbara O'Reilly

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

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Cyndi avatar

Cyndi

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.

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Amy Grindstaff avatar

Amy Grindstaff

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.

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Suzy Fivecoat avatar

Suzy Fivecoat

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.)

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Kerri avatar

Kerri

Another option is a spray bottle with a fan that provides a oooling mist on hot days. Look for it by the brand name Sqeeze Breeze.

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Debbie avatar

Debbie

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!

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Emily avatar

Emily

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!

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Emily avatar

Emily

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??

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ed avatar

ed

Move to SF, high 70, low 40

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Kim H avatar

Kim H

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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Judy warren avatar

Judy warren

Haven’t been diagnosed yet. I have all these symptoms. Don’t know which direction to go first

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Shannon C avatar

Shannon C

Hi, I am 44 years old and have started with joint soreness, muscle soreness (at times), eyesight getting slightly worse, and the worst part for me - the spasms. They are keeping me up at night. Anyone start of with muscle spasms that kept them up? Waiting for an apt with my PCP.

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

HI Shannon,

I am so sorry you are experiencing these symptoms. I look forward to when you can see your PCP. I encourage you to make a list of questions to go over so they can best help you find symptom management. I experience spasms as well and they can be other relentless. I use a muscle relaxer and compound cream for my leg pain. I am limited as to when I can use the muscle relaxer as it makes me sleepy. Please let me know how things go with your appointment. I am wishing you all the best.

Warmly,
Jenn

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Fiona avatar

Fiona

I live on the Gold Coast Queensland (Australia). Average temperature is 30-34 Celsius. This year hottest it is already 27 by 7.30 am. I have had enough with the Sunshine state and in the process of selling my house to move to Tasmania (Aust) where the temperature never gets above 28. My house faces west so by mid afternoon I have gone through my 3 Gel mats and the multitude of frozen towels. The kids pool with ice cubes & a bowl of ice cream is the afternoon activity. I used to work in an office for 27 years before MS and froze as my business partner and to majority of staff were somewhat larger than myself. I hated to stuffiness of AC so even with the coolness of the AC I can't live a third of the year stuck indoors 24/7. So Tassy here I come. Beautiful, cool and I can sit in the sun and work on my laptop.

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Jeffrey Ledger avatar

Jeffrey Ledger

Hi Fiona. They say things happen for a reason! My parents and brother emigrated to Sydney in the mid 80's, I stayed in the UK. They say the disease is worst round the north and south of the planet, and less around its waist, in hot countries. If I had emigrated I would be suffering like you. As it happens, its 14 degrees here in Durham and I am still wasted. I know Tassy, theoretically better, until the sun comes out! Hope you achieve the balance. possibly better but I'm afraid not perfect.

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Jeffrey Ledger avatar

Jeffrey Ledger

Hi guys, from the UK! In my early stages of PPMS I still braved the sun, especially on holiday in Cyprus, but there came a point, a few years ago, that I realised it was starting to effect me. Although serious temps in the UK are rare even today, 14 degrees or higher in direct sun, drains my strength and coordination. Don't know why, but it does. Your contributions have helped greatly to confirm that I am not going mad, or having an episode. Knowledge is king!

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Jeffrey Ryan avatar

Jeffrey Ryan

I am a person who loves the sun and how it makes me healthy when I am in it. I have in the past loved to sit and get a tan which after winter makes me feel energetic and overall good. This year however the humidity and extreme heat trigger involuntary movements, fatigue, and overall just drawn out. Once inside in the A/C it helps all conditions. This article has helped me understand what to do in this new chapter of life.

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Pamela avatar

Pamela

I was diagnosed with the ms and Trigeminal neuralgia.
The heat is bad for the ms and cold triggers the trigeminal

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Helena Bedford avatar

Helena Bedford

How reassuring to come across this article. Am feeling unbearably hot and muzzy with this heat in England even though it’s only the start of Summer. Friends, family and husband think I’m exaggerating when I tell them that people with MS are intolerant of heat, so it was great to see that “heat is like kryptonite” to an MS sufferer - I’m hoping that when I now tell them that, they have more of an understanding of how I feel. It’s a perfect way of describing it. I find that no-one seems to show any understanding of how I feel, and when I list or describe how I’m feeling, it seems to fall on deaf ears. The above comments, hints and tips are invaluable, and I don’t feel so alone - thank you so much.

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Debbie Spence avatar

Debbie Spence

I was diagnosed of MULTIPLE SCLEROSIS, I was placed on medications which relieved some symptoms but my health was fast declining. Finally, I was introduced to Mayaka Natural Clinic and their effective Multiple Sclerosis treatment. I immediately started on the treatment, it relieved symptoms significantly, even better than the medications I was given. Visit ww w. mayakanaturalclinic. c om. First month on treatment, my tremors mysterious stopped, had improvement walking. After I completed the treatment, all symptoms were gone. I live a more productive life.

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Debbie Dean avatar

Debbie Dean

Hi everyone 🥰,

What a relief and nice surprise to find you all this evening.

Without going back to the 90’s, etc., when I was first diagnosed. I’ve been reading all of your comments as fast as
I could. I was told about the heat exasperations early on.
But skipping to the dominant question/worry right now. About 9 months ago (when it was 114 in Orange County CA) I had a frightening experience with the heat. I was taken to E.R. by ambulance because of the bizarre and new symptoms.

But what I’m wondering about right now is—I don’t know how to ask it, no dr has ever explained it to me in detail.

Does being outside in really high heat have a different effect on the body than being inside, in high heat and no air conditioning? Is it the internal body temperature (inside the house)that can bring on the same symptoms as being outside?

I really don’t know how to explain it. I rent a room, partly due to a remission that I went into in 2015, and anyway I dont want to bore anyone, you are all so awesome with your honesty and caring.

I’m trying to understand why am I having worse symptoms when I’m just staying in the house out of the heat?—but in reality I’m so hot, increased symptoms.

Maybe I went into a more progressive state when I went to the hospital and could barely walk for quite a while.

If any of you could answer here or email me that would be wonderful. I am going to put as many of your tips into use right away.

Thank you, thank you,
Debbie

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Jennifer (Jenn) Powell avatar

Jennifer (Jenn) Powell

Hi Debbie,

Thank yo so much for writing.

I am so sorry for your experience being taken to the hospital. I live in OC and remember that day well. The heat is indeed so detrimental to our bodies.

Referring to your question; I do not know the answer.I do know heat is heat. If you are overheated in your room that will certainly exacerbate your symptoms.Please see of you can access a small A/C unit or even a fan as it is important to stay as cool as possible. A cooling bandana or towel will also help.

Wishing you wellness Debbie.

Warmly,
Jenn

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Andy Goodridge avatar

Andy Goodridge

Hi everyone
Living in Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿
My wife diagnosed 21 yrs ago steadily decreased mobility and heat was never an issue until now.
It’s strange because it brings on severe fatigue as everybody here has also experienced but never before has she experienced Nystagmus which seems to play a fleeting part until her body cools and then her eye movements become normal.
Anyone else experienced this ?

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