A Hot Mess: Heat Sensitivity and MS

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.

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.

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.

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.

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.

At least you can walk : )

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.

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.

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.

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.

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.

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.

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

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.

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.

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.)

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.

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!

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??

Move to SF, high 70, low 40

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.

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.

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!

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.

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

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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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

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 ?