Hot Hot Hot!!

New diagnosis and before diagnosis
1

Hello Funky Forummers!

I’ve just been reading poor Martina’s cold thread and while I absolutely sympathise with you ‘nobblers’ it’s made me want to whinge again!!!

Because I am bloomin boiling to death I tell you!!! I feel like I’m slow cooking from the feet up and from the inside out!!

Since recovering I’d say 80% from my last ‘relapse’ to a level where I’m functioning - along with my numb bladder and leg stiffness - this ‘body thermostat’ malfunction is still causing me no end of problems!

I’m just constantly boiling hot - every minute, every hour of every day I’m struggling with it! The night drenches are horrible - soaking wet bed and waking throughout the night.

I cannot bear the heating on in the house or the car or in work. I can’t even stand this heat coming from my laptop!!!

I am still quarrelling and arguing regularly with my hubby and son - but we have found an uneasy compromise - basically they are allowed the heating on in the rooms they occupy only! Cooking is an absoulute nightmare believe me and there have been some kitchen stand offs!

During this freezing period I have been sat in the living room with no heating and the patio doors wide open. During the snow I was gutted when the wind blew my way - but only because the blizzard coming in was a darn nuisance & making a mess!!

Hubby said he kept expecting to come in and find a snowman on the sofa - he said he had a carrot ready!!

I said what for my nose? He said no the other end!!! Cos I’m driving him nuts!!

Jokes aside though it really is daunting me - it’s gone on for so so long - at least 2 years at this ridiculously abnormally severe level!!

I can’t count how many times it’s reduced me to tears and made me feel like I just can’t go on like this! How come I’m not suffering from hypothermia/frostbite???

Surely my body is taking a battering with all this??? It’s just totally exhausting!!

And nobody seems to be able to offer anything to help me!! The GP, haematologist, endocrinologist, neurospinal and gynecologist are all still absolutely insisting this is neurological - NOT the menopause - although I think now I’ve hit 50 that I may be getting the odd classic ‘hot flashes’ as well now - they are pretty distinctive though when they do happen - because they start around my neck and boil my head!! LOL!!!

Anyway! That’s my whinge over!! Must go and pick the ice from between my toes!! xxxxjenxxx

2

Nightmare :frowning: SURELY there must be a neurologist somewhere who’s interested in this rather unique problem??? Have you tried searching university-based staff lists for someone? You never know! Karen x

3

Sorry I am no help Kissydean but I so love your sense of humer I am sitting here crying

4

Eww Karen!! It is a mare believe me! There just doesn’t seem to be any light at the end of the tunnel or any respite from it! I’ve searched on here but can’t find anyone who has it quite this bad - plenty of milder cases though x

Where would I start do you think?? I’m dreading telling the MS Specialist how bad it is in case he totally thinks I’m nuts!! (not that he’d be totally wrong if you know what I mean) xx

Sally - I’m just glad I’ve cheered someone up with my rant!! xxxxx

5

No promises, but I’ll try and have a wee look and see if I can find an author of academic papers on thermoregulation in the UK. You never know! Kx

6

Ohhhh Kizzydane - it sounds horrible. I do feel for you - I hate being too hot! Like Sally60 I can’t offer any help, but you did make me smile… Maybe you need a skiing holiday somewhere ??? Sat by the pool in your bikini, watching other people being active of course. lol

H x

7

Thank you so much Karen! Anything would help - I’m at the end of my tether with it - I’m just desperate for some relief !!! xxx

H - the weird thing is - I’m bad in summer when it’s hot and humid - I really suffer with my symptoms - then when the temperature is mild and consistent - I’m ok

As soon as the temperature drops my body seems to react all wrong to it!

I seem to go into this horrible cycle of can’t stand any heat at all - even mild heat - like I said even the warmth coming from my laptop aggravates it! LOLOL It’s NUTS I know xxxxjenxxx

8

Hi Kizzydane… I wonder if you are suffering the same ‘hot’ thing as me. Took me ages to work this out. I was getting very hot esp at night (with heating off & window open) and then over a period of time I started to realise that if I get too COLD I get HOT.

Now I know that sounds completely crazy but I swear it’s true. By keeping my bedroom warm’ish (window open a crack and heating on low) I am not getting so hot.

I find the same when out in cold weather, if I’m not dressed warmly enough I start getting very hot… but if I’m layered up in thermals etc I stay warm but not hot.

Very hard describe but it’s been like this for past few years and I only worked it out last year.

Pat x

9

Oh Pat - sounds familiar - but I just don’t know anything any more!

All I know is it’s daunting x Funny enough I was thinking earlier that maybe I should put the heating on full, put my thick dressing gown on and suffer for a while to see if it kick starts my stupid body into reacting in the right way!

The trouble is it’s so unbearable! xxx

10

You know just thinking about this and my feet go instantly frome not hot but just a litle over warm to what I am expiriencing as freezing and sometimes I can not decide if they are too hot or freezing. This sounds strange even to me just reaking it back but it just could be related to the above posts

I hope this makes sense.

11

i have had this at night when i am soaking wet -

have you tried a cooling vest

jx

12

Hi Sally - yes it makes sense!! - my right foot and particularly my right hand feel ice cold most of the time - like my body is on a hot sunbed while my hand is in an ice bucket! Nuts!!! xx

J - I haven’t tried a cooling vest - will do though! Googling it now! Thank you xxx

13

no problem

let me know how it goes

anything is worth a try right

xx

14

no problem

let me know how it goes

anything is worth a try right

xx

15

Also Marks & Spencer sell ‘cool sheets’… apparently keep cooler than usual. They might only sell them in the summer. I’ve not tried them but worth a try.

I have got a cooling mattress topper that does work quite well. It does get warm when lying on it for a while but if you shift over it is extremely cool (handy if single & sleeping in double bed). I bought it on Amazon for about £50 I think. Developed by NASA (doesn’t everything seem to be developed by NASA these days? I mean why do they need cooling mattress toppers in space? )

Pat x