@Nicky13

EditedLast reply

Nicky13

Does being to Hot or cold?

Hi I'm newly diagnosed 2 weeks ago with RRMS, I've always travelled and my favourite places in the world are tropical....I have been reading of course about MS and I've read that becoming to hot can bring on a relapse, can anyone confirm this with an experience?....as I'm still intending to live life to the full and that for me is getting lost I'm the tropics and or coures that is high humidity, will I be lining myself up for trouble?.....any comments about this question will be greatly appreciated...thank you.

fay_mishima

@fay_mishima

Hi! I can't say for sure that it will bring a relapse, but for me personally the summer seasons is always the worse because my symptoms worsen. For example, numb hands feel number. Drop foot becomes worse. Weak leg turn to a limp. So I just avoid the heat and try to stay cool.

Nicky13

@Nicky13

@fay_mishima thank you, so there is some truth in it, I live in London so I will pray for a hot summer more then i usually do so this monster inside me can be put to the test.....fingers crossed I'm a lucky one where the heat does not make me worst!!......and then im gone!!! ✈🏝😎

fay_mishima

@fay_mishima

@Nicky13 I love your weather. When I first first diagnosed I was in the summer and I could barely walk. Back then we didn't know good doctors here so I came to London for a checkup and LP. Your sordid cold weather helped me with my legs.. do wae thankful for that. Go with the flow and don't wish for something like that. My doctor told me to stay away from hot baths and Jacuzzis too. Just keep body cool always and wishing you all the best. I'm happy to talk more anytime.

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Nicky13

@Nicky13

@fay_mishima yes my wish comment was Loose, sorry I'm new to understanding MS and that's all that's been on my mind since i was diagnosed, it was a complete shock and still is....I will come to terms with it and I'm sure understand myself more....thank you for your kind words and thank you also for your offer of to talk any time, very kind of you.

Ntsiri

@Ntsiri

I have definitely found hot baths etc make me worse but have traveled extensively in Africa and only ever felt better there. I think the important thing I learnt in my travels is to live life at the right pace for the climate and slow down when it is hot

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Nicky13

@Nicky13

@Ntsiri thank you for the advice, much appreciated...."Africa!!" Wow!.....you have made my numb foot start to itch aswell!!..Haha!..thank you!! ✈

Lowlander

@Lowlander

@Nicky13 Hi have a read of the link below it might you out a little. https://mstrust.org.uk/a-z/uhthoffs-phenomenon

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Nicky13

@Nicky13

Thanks for that @lowlander .that is very interesting you sent me that to read as my main problem is visual, that's actually how it came to light that I have RRMS, I went completely blind in my left eye at the start of February and that's why I had an MIR and it showed all the scarring on my brain that led to my diagnosis a couple of weeks ago and my vision has only came back about 50-60%, so maybe being in the heat will effect me...so much to think about all the time .πŸ˜₯

Lowlander

@Lowlander

@Nicky13 I know how you feel. I bought a portable Air-con for the summer I almost live next to it when it gets warm.

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ryba

@ryba

I always feel more tired during hot weather, learnt to enjoy a bit colder showers too. But I think it waries from person to person? Lots of cold drinks, a nice fan and you'll get though it. πŸ’ͺ

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mattltsmith

@mattltsmith

It sounds like what you're describing is a pseudo exacerbation. Existing MS symptoms can flare up when exposed to heat because heat slows down the speed of the electrical signal. It's roughly the same logic behind why liquid cooling is used in intensive computing so the computer can run more efficiently. As my neurologist said to me years ago "heat is the enemy of electricity." From my understanding heat won't bring on a full on relapse, but a rise in body temperature can cause a flare in symptoms. This used to happen in my eye that had optic neuritis, but has since resolved, and heat appears to affect sensation in my feet to a very limited degree, but not enough to be bothersome. People won't always have the same pseudo exacerbation triggers though, heat is a common one, but equally some people are affected by cold. Stress is a pretty common trigger. Very worth reading up on "pseudo exacerbations" and the difference between flare ups and full relapses. Flare ups are nothing to panic about and are usually just temporary worsening of existing symptoms caused by a trigger, heat being a common one, but it is not a full on relapse. talk it over with your doctors, but I imagine you'll still be able to enjoy traveling :)

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watsoncraig

@watsoncraig

@Nicky13 the article @lowlander posted is a great one. For me it’s the humidity not the heat that is destroying. I have though recently been wondering if it is only the heat that effects folk as when in warmer climes (which isn’t difficult living in Scotland) you tend to do more and have longer days instead of being wrapped up watching TV and sleeping (more research required that I am personally willing to carry out)

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Vixen

@Vixen

Hi @Nicky13. I'm not a medical expert but hot countries can't cause a relapse, but overheating can cause flare ups and exaggeration of symptoms, so being in a hot climate, you need to become more efficient at managing heat. Before Covid, I went to Spain every year in the height of summer and was fine because I had air conditioning and only walked small distances when the temp was lower. But the sunnier environment did wonders for my general health and wellbeing, so you have to balance things. MS doesn't have to kill your dreams, it just means you have to modify them somewhat!

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Chezy

@Chezy

I'm not sure about relapses but I'm definitely better in the warmer weather, I'm cold sensitive so winter is a pain for me. Doesn't stop me going out in snow but it makes me alot more fatigued.

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Nicky13

@Nicky13

Thank you all for your comments and advice, it's very comforting to know I'm not on my own, I have to go for another MIR on my spine this time...I've been going through the emotions and coming to terms with my MS since I was diagnosed a couple of weeks ago and getting all this feed back from you all has really touched me....i thank all of you kindly. πŸ™

Jaffs79

@Jaffs79

I was diagnosed after optic neuritis in my left eye and the heat definitely makes my vision worse. Heat makes my symptoms worse but once I cool down its ok its hasnt caused me to relapse. I find I am worse with hot showers, working out or with the heaters on in the car πŸ™ˆ I seem ok walking or sitting in the sun just can't run around in the heat like I used to lol

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Tanya_Trenholm

@Tanya_Trenholm

I've always found that the cold is worse for me

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Doug_Graham

@Doug_Graham

I too was warned after my diagnosis, 2002, to avoid heat. It would cause MS exasperations, relapses.... My summer break every year was riding my Harley Davidson somewhere in the US for a couple of weeks. Sturgis, SD, Los Vegas, NV, Family in Ohio, or a state Harley Owner Group rally, Kansas. Oklahoma, New Mexico... I live in Texas where the summers get above 100 F for many days. I continued to push and not change my life. I didn't notice a lot of effect until ~ 2015. I was working in my yard the temperature was ~ 110F. All of a sudden I started having muscle spasticity, and cramping to the point I couldn't walk or control myself. I unfortunately was alone, scared and had to crawl in pain to the shade and try to get inside. I had a pool next to me but was terrified to jump in the pool. If I couldn't stand walk or move swimming probably was an option. I got inside and laid on the floor. My dogs immediately began licking me which may have cooled me off or being inside but the spasms slowed and I was able to crawl to and get into my bed. It was very emotional because I had lost control. I also had an argument with my son before he went to school. I was terrified if this got really bad was that the last words we would have had together? So, yes, even though I didn't believe it heat would affect me it did hit me like a hammer. I still closely monitor my self and temperature, humidity activity and any tell tale signs of MS. I have a Steel cooling vest and use the pool to keep me cool. I avoid hot showers and I have fans and misters on our covered patio outside. It came on quick so I'm alert to what can happen. Be careful and learn how you're effected by heat and activity. I'm a data geek and actually keep a short journal on things that happen and a short activity and environmental ambient temp humidity entry. Only when things are noticiably negative or positive time and date. It helps to summarize the details when I see my Dr's. There were too many years of visiting the Dr and when asked "how I've been doing since last visit ?" I would say OK I guess. But now I can give them a break down of what happened when and why. It has helped my treatment and most importantly developed a strong communication between the Dr and I. My thoughts and prayers for all y'all.

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Nicky13

@Nicky13

@Doug_Graham thank you for sharing your experience, that sounds heavy and alot of food for thought!...I will keep your story and experience in mind when I hit the road for an adventure!....what type of MS do you have if you dont mind me asking? ✌

Criscross21

@Criscross21

I want to weigh in on this discussion. I have RRMS but my primary symptoms are cold sensitivity and sensory pain. I find that heat really has a positive effect on reducing that pain. Whether in a warm therapy pool or out inside in the hot sun, I find, at least while I’m in it, it really offers me a ton of relief. But then when it’s time to go inside the air conditioning, it returns to normal :( I have never had an instance where I felt that overheating triggered a flare up. For me, at least, flare ups seem more tied to stress, lack of sleep and overexertion/fatigue. God bless you as you work through it. Keep chatting with us!

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Nicky13

@Nicky13

Thank you @crisscross21...interesting, thank you for your input. 😊

RoxanaM

@RoxanaM

@Nicky13, for me ...hot is bad πŸ˜…πŸ€¦πŸ»β€β™€οΈ. I was diagnosed last year in September after I had a bad relapse in June ..during first lockdown. Was quite a hot summer...and that plus no activity ...result was a big relapse 😬. My consultant told me that hot or cold ( depends on person) can trigger flares up. I hate heat ...it a trigger for me ....and I'm terrified of summer πŸ˜¬πŸ€¦πŸ»β€β™€οΈ..looking into buying a air cooler πŸ˜….

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Louisbear

@Louisbear

For me, cold is the problem. I'm in Australia so we get pretty seriously hot in summer, but I can always rely on my MS symptoms easing when the weather's warm. I never move better than I do when I go to the tropics

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wjgregg

@wjgregg

Dear @Nicky13, I can cope with very high temperatures, if it's "dry heat". I am fine in California, in places such as the Joshua Tree national park which is a desert. I really struggle with hot, humid temperatures, though. Cold, miserable, wet weather, like we have here in Lancashire really gets to me. It shuts my body right down, so that even putting one foot in front of the other is a challenge. I guess I'll have to just keep thinking those positive thoughts about winning the lottery and being able to move country, never mind house! Take care, and best wishes, Jon

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AndreaG

@AndreaG

My MS is heat intolerant, so when I get hot it affects my balance, I go dizzy, have trouble walking. Been great whilst going through the menopause (not). In our "hot" summers I can be found lying on my kitchen floor with a cold pack on my stomach. Never prompted a relapse. If you are travelling, you may want to consider cooling jackets (Google it). There are various options, but they are designed to keep you cool. Regular dips in the sea/swimming pool would be a good one as well, accompanied with drinks full of ice :-).

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thegalvan5

@thegalvan5

I have found that the heat definitely makes my MS worse. The cold not so much. There are way however to keep cool. Cooling vest, cold neck wraps, cooling wrist bracelets to name a few. Check with your local MS society. They can help.

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nicolajh889

@nicolajh889

Living in the UK too, a hot climate has never been a concern πŸ˜‚.. But I couldn't give up holidays! The benefits of vitamin D from the sun, if only for a few weeks seems to have a hugely positive effect on my health and wellbeing, and I've always come home feeling 'better' x

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Vickyms

@Vickyms

I too have always loved the heat. But not being hot, if that makes sense. I spent a couple of years in Africa before diagnosis. I loved never being cold and learned from the African people that you just need to slow down. I have recently begun tracking symptoms on an app called Emilyn, and this uses your location to include the local temperature from weather forecasts. And it seems that my fatigue does seem to be affected by heat. I think it's actually harder at this time of year when the temperature changes so much during the day so I'm never wearing the right clothes! But I am learning to embrace the cool and stay in the shade.

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