Severe heat intolerance

[Ambennett]

Hi there, I hope everyone is well. I was just wondering if anyone suffered with really severe heat intolerance and if so how do you manage it? And if you get really angry red rash on face...

Many thanks for any advice

[Hidden]

I get an angry rash in the sun but heat intolerance is an understatement. Summer destroys me fans going feet in cold water never found a solution yet . Sorry

[Ambennett in reply to Hidden]

Hi there, thank you so much for replying. Sorry this is for my daughter who is 20.. she has sle and shes terribly heat intolerant, brings out really angry rash immediately and makes her really unwell.. do you have any advice and do you also have lupus? X

[Hidden in reply to Ambennett]

No I don’t have lupus I have RA . Have you tried the Lupus forum? I would love to know how to deal with it myself x

[Ambennett in reply to Hidden]

I've been on for information for last while but new to the posting so didn't realise I was in wrong place.. I'll see if I can find that and if anyone has any advice I'll let you know.. thank you again, I hope you are keeping well x

[Fruitandnutcase]

I like a spray can of Evian water - I keep one by the bed for night time and a mini one in my bag for day time.

I also have a ‘magic scarf’ that I bought in a garden centre - you soak it in cold water and it stays beautifully cold. I’ve even used a hot water bottle filled with cold water. I used to have a thing called a ‘chillow’ as a cold pillow it was quite expensive when I bought it so when it got past it’s best I didn’t replace it but it was useful.

I always carry water, sometimes I chill a bottle in the freezer and drink it as the ice melts - or else just hold it against my wrists. Hair up off her neck of she has long hair

I keep the curtains shut and the windows closed to keep the hot air out - that’s only useful if you are at home during the day though - plus an electric room fan is good too . It’s worth buying a hand fan too and keeping it in her handbag.

Basically I try not to go out in hot weather and I stay in the shade. Loose clothes are good too.

It’s also much easier to deal with if you can keep cool in the first place rather than to try and get cooled down once you are over heated.

[Ambennett in reply to Fruitandnutcase]

Hi there, thank you so much for taking the time to reply.. shes so terribly heat sensitive its taking over her life, she has alot of problems just now and checked lots of information but dont see as many people who have lupus listing as massive issue. Everything she does revolves around this. And it takes alot to bring it back down again. Thank you for all of your advice I'll definitely be getting these things in for her. Thank you again, and hope you are well x

[Fruitandnutcase in reply to Ambennett]

Just had a look on Amazon- I put in ‘cool scarf’ and got loads of options from cheap bandanas to a necklace of big bead cooling necklaces which are expensive.

This is the one I’ve got at the moment - not glam - but you’ll see there are loads of options 😊

amazon.co.uk/dp/B0739X582M/...

[Ambennett in reply to Fruitandnutcase]

Hiya thank you that's amazing I'm on amazon just now looking up cool pillows etc so I'll look that up now... so kind of you to get back to me. 💓x

[springcross in reply to Fruitandnutcase]

I keep all window closed in summer too and have a fan in every room, wall fan in the bedroom and a pedestal fan too.

[Mmrr]

Yes, I struggle in the heat. I use a lot of ice packs, run my wrists under cold water, sit with my feet in cold water, have cool showers, wear strappy tops even in winter. It can be very difficult at times, I get a very red face, but not a rash.

[Ambennett in reply to Mmrr]

Thank you for replying. Just trying to find out if this is a common problem with people who have lupus or if it's something else. Hope you are well x

[Ella_12]

Hi, I am heat intolerant and come out in a rash quite often. It was initially thought it was a lupus rash but biopsy revealed its Jezners Lymphocytic infiltrate a benign very itchy rash which spreads wherever it presents, face back, chest, elbows etc. I've had this and autoimmune issues since I was 23 now 59. My skin does not tolerate the sun. I wear factor 50 everyday, even in winter otherwise I would be one large rash from head to toe. Apart from that I try to eat as healthily as possible, drink lots of water and wear lose fitting clothes and a wide brimmed hat in the sun. Hopefully your daughter will eventually learn to manage her condition. It takes time and trial and error and gathering as much info as you can to make these conditions more manageable.