Last reply 6 months ago
No energy when hot

Hi all,

I can’t quite describe it but when my body temperature feels 100 degrees my symptoms are worse which I know will happen but I also feel very lethargic & i feel like I just want to lay down & have zero energy. Is this normal?
Today for example I literally couldn’t get up the stairs which is quite a struggle anyway sometimes! I have SPMS.

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stumbler
6 months ago

@clairg1 , you’re referring to Uhthof’fs Phenomenon, which can literally wipe you out :-

https://www.mstrust.org.uk/a-z/uhthoffs-phenomenon


nutshell88
6 months ago

Tell me about it
I purly suffered at highschool dealing with the heat here in Saudi Arabia till I got daignosed on the second year of hoghschool suffered more at the university and do on. Summer has begun yesterday and I woke up today with vertigo-like dizzeness.
Its not just the heat but the low pressure too It feel as if something os safocating my brain lol juicing it.

But god bless. Whoever created the air conditioner deserves a price.


nutshell88
6 months ago

And dw I dont have SPMS and still go up/down stairs as a turtle MS hehe i hope it never lasts in your case


grandma
6 months ago

A lot of people with MS suffer with heat. Some people can’t take even an English summer, space suits and paddling pools at the ready! I was lucky and could go to the Canary Islands until the end of March beginning of .April , but not after. I understand that Iceland is a favourite holiday destination for people with MS (if you can afford it) In this country we have just had a week of snow we should have been celebrating, but of course we couldn’t go out because of slipping! Cest la Vie


bonang1975
6 months ago

Yeah thank god we are at the end of summer here in oz. Be glad to see the rear of this heat.


clairg1
6 months ago

Hi all, thank you for your responses.

Yes stumbler that is a great link thank you. I have had O.N years ago & still suffer with it but strangely when I’m hot it doesn’t effect his so I suppose it could be worse!

I personally would be great (to the greatest I can be anyway!) if my surroundings are below 19 degrees, though the cold is starting to affect me too sometimes.
Wow I’m so glad that I was born & live in a cold country, not Saudi or OZ. I bet you are so pleased its coming to an end


arbee
6 months ago

Summer is my worst nightmare and I live in the UK, I can’t imagine how unbearable it must be to have these same symptoms in a hot country.

I was only diagnosed just over a year ago but have suffered in summer for many years, I used to be baffled how everyone else got so excited when summer arrived and it’s something I’d be teased about by my mates. People used to assume it was because I’m a redhead and I was worried about burning but I don’t burn that badly (I’m not really a full-on ginger, my skin isn’t that pale), I just find anything over 20 degrees completely unbearable!

My old job involved working outside a lot, they just used to tell me to wear sunblock and would send me out in it all day, this was the main reason I had to switch careers, 16 years learning Hydrometry completely down the drain. I now write software in an air conditioned office so the last few years have been ok although we are moving offices in May and there’s no air con in the new place so I am starting to worry about it already!


clairg1
6 months ago

Hi arbee, I can totally relate – I am strawberry blonde naturally so don’t really do well in the sun anyway, as much as I would love too!

I have only recently been diagnosed though for the last year & half or so I have known what it was but wasn’t ready to admit it & go to see my GP for the referral to Neuro.

We booked a holiday last summer for this summer to Tenerife in July & I am absolutely dreading it now so I know what you mean about the new office. Can you not purchase a couple of desk fans? That would make a difference plus one for your feet too?


grandma
6 months ago

Can you change your booking? I wasn’t joking about Iceland, you should be able to change with the help of your MS nurse and/or neurologist should be able to provide paperwork to your holiday insurer. Worth looking into?


clairg1
6 months ago

Morning grandma, it’s sounds a great place to go but the kids aren’t aware of my diagnosis yet so I don’t want my problem to affect them so I will have to grin & bare it 😏
Definitely worth looking into for our holiday next time though


stumbler
6 months ago

@clairg1 , you might find that you feel OK with the heat in Tenerife.

The heat in the UK always seems to come with a healthy dose of humidity, which makes it very oppressive.

Tenerife would have a fresher type of heat. 😉

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