Advice please,

[tiredmum]

I know a lot of you also suffer from heat intolerance, but for some unknown reason mine has been taken to the extreme this year.

I know the sun triggers a flare for myself, so really do my best to avoid it. I also know that I do not cope with high temperatures.

However, this year I am not coping with any temp above 18 degrees!!!!! I went to my daughters school assembly and nearly passed out after about 15 mins, i've tried twice to go to the docs and nearly passed out or thrown up in the waiting room. It is always accompanied by nausea and quite often palpitations and shaking. I drink lots of cold water, wash my face and wrists in cold water, wear loose and cool clothing, but nothing helps. It recently took us 5 hours to drive 100 miles so we could keep stopping in the shade as i felt so ill.

I've also lost half a stone in weight in a month, and am starting to get really panicy about going out of the house now.

I am supposed to be going a caravan holiday in a couple of weeks, the temp is starting to soar again and I am really contemplating staying at home.

Do any of you suffer as badly as this and any ideas why all of a sudden it has reached this extreme.

thanking you all in advance

[Acorn1]

Hi Tiredmum

I was thinking of posting just the same thing. I'm not coping at all with the temperature rise. I've got a rash on my chest and my scalp feels itchy and sensitive. The heat has zapped me today. I'm taking my kids camping on Tuesday for 5 days and I'm really starting to dread it. I just know I'm going to come home next week with a rash all over my face and exhausted. I shouldn't be so pesimistic but for the first time in my life I'm actually looking forward to Autumn.

I've done some research today and realised that my Azathioprine reacts with the sun and heat which was news to me.. So maybe have a check over your meds if you're on any to see if the sun increases side affects.

But to answer your question I think the extreme change in heat and sun exposure from monsoon season to heat wave has taken us Autoimmune suffers by suprise and I guess it's just a question of hanging on tight till its over. I'm going to up my steroids for a week or two to get me through.

I really hope you manage to get on your caravan holiday, maybe you've already looked for air-conditioners for your caravan?

But even if you can't venture outside it's still good to get away.

Alison x

[tiredmum in reply to Acorn1]

Alison,

i never even thought of my meds until you mentioned it, and I am on a lot of different ones compared to last year.

we have found a fan, got the air con working in the car, are going to leave at 6am so not travelling in the heat and hopefully should be cooler at the coast than the midlands anyway.

You are all right, I can't let this ruin my life any more

Thank you

[SRamkin]

Hi Tiredmum and Acorn 1

I’ve always had trouble coping with heat but this summer feels worse. I find it impossible to regulate my temperature. While my partner shivers in my air-conditioned prison, I feel like I’m burning from the inside and I’m constantly out of breath. Also, every time I get out of the shower my skin feels like it’s on fire - I get a very real, very painful burning sensation. I live in extreme heat conditions (40+ Celsius with 80+ humidity daily!) which can’t be good for my Lupus, can it?

I do not know whether it’s relevant, but psychologically I’m a wreck. I get a daily, toxic mixture of depression, anxiety, and anger so strong that could poison a viper.

Sorry, I do not have any advice to give, I just wanted to share.

Love

xx

[Acorn1 in reply to SRamkin]

Hi SRamkin

I'm pretty vile at the moment too. Snappy, cruel words seem to jump out of my mouth without any warning usually to people who love me the most. This usually causes me guilt which makes me feel worse! This heat makes my Lupus worse, which makes my mood worse which in turn makes my Lupus worse.

I'm sharing with you xx

[Looby in reply to SRamkin]

Really sympathise with all of you who burn up in the heat.......I'm worse this year than at any other time, and have taken to wearing a large hat and thin shirt top whenever out in the sun.

Is the itchy scalp all part of the same reaction? I'm having to wash my hair just about every day with baby shampoo, and my lips are cracking too....... O wot JOYS!!!

Hope the camping trip has some fun moments, Alison!

[witch2]

I have this but not as badly I can be pouring sweat one moment overheating followed by feeling cold. I wear layers of clothing and spend my day taking layers on and off. Find avoiding too much synthetic clothing helps. Running your wrists under very cold water can help. This company specialise in clothes that help with sweats mainly for the menopause but can help with overheating.

coolsleepwear.co.uk/

[Looby in reply to witch2]

Thanks for the link......so much sleepwear is synthetic now.

[margareth8537]

I think that the Summer(?) in the UK this year is not helping at all. The weather has been awful, and so I am used to the cold and wet, and when it suddenly gives a true temperature for July I just can't manage!

Just been away to a car rally for a few days and upped my steroids to get me through it. Found it difficult as I find being outside in the Summer difficult anyway, but I managed.

Feeling grotty today, so will stay on the higher dose for the rest of the week, then reduce slowly.

Hope you get away and enjoy it.

Love

Margaret

[Lucylou31]

Have you ever thought these could be panick attacks. Because panic causes fainting, palpations, nausea, hot sweats etc. I thought i was going through the change for a while and then started to get all the above symptoms. Once i realised it was a panic attack i started to control it. Its worth a go to see if you can control it yourself. Hope this helps Lou

[tiredmum]

If only it was Lou,

unfortunately i go like it if the shower is too hot and whilst i'm cooking, so def not panic attacks.

Thanks for your thoughts though