Me again 🥰: Thanks for all your replies on my last... - LUPUS UK

LUPUS UK

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Me again 🥰

Buckley123 profile image
6 Replies

Thanks for all your replies on my last time Post really appreciate you all taking the time to write back to me.

I decided it would be easier to write a new post as I don’t feel well to write back to everyone.

Sorry 😐 xx

Anyone skin really hot having temp for no reason

I went out in the sun yesterday but it wasn’t hot

I had a black T-shirt on and when I can in my skin was boiling and rashes bit odd as I had only been out for about 30mins sitting in the field at the back of my house with the kids.

Then all night I had a really high temperature but you know when you try and sleep it off but it keeps waking you up

I’ve been feeling really hot since my skin is just hot to touch 🤔 rash went when I came in yesterday and cooled down it’s weird I think it’s wearing black that heats up my skin quickly.

Have got this Crawling under my skin feeling also ! My face it particularly hot but every time i take a pic it takes the red out ( great in normal circumstances but not when you want to show it 🤨)

Feeling fed up like I’m coming down with something.

Xxx

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Buckley123 profile image
Buckley123
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6 Replies
Florence91 profile image
Florence91

Buckley it doesn't have to hot to get you affected by ultraviolet light.in the sun. It sounds like you are very sensitive to that so please use your factor 50 suncream on all exposed areas and prefer cover up. See how it goes and talk to your GP if it doesn't improve in a few days or something else emerge. Hope you feel better soon.

You can put some cream on to help the irritation. All the best

KayHimm profile image
KayHimm

When you say temperature, do you mean your skin feels hot or you have a fever or both? What is the rash like? Did you have other symptoms?

Something is happening and your doctors will want to know about it. Thirty minutes is a long time to be without sunscreen in the May sun.

Xk

Buckley123 profile image
Buckley123 in reply to KayHimm

Thanks just got skin no temp ! I don’t think 🤔

But I had a T-shirt on and it came through same rash I used to get !

No just feel sun stuck! But it was about 15 degrees xxx

KayHimm profile image
KayHimm in reply to Buckley123

Mention it to your doctor. Generally, UV sensitivity would result in a rash on exposed skin. If there is a systemic reaction from the sun, the heat you feel could be a fever, which means your immune system is being activated. You really should take your temperature and record for your doctors.

One person on the forum has a reaction from sun when she wears certain fabrics. Does that sound like what is happening?

You might be sensitive to heat too. It is a stimulus and can do weird things, particularly to nerves.

It is concerning that you felt ill for so long after. Hope your doctors figure this out.

Xk

happytulip profile image
happytulip

Unfortunately you sound very much like me in that you may be extremely sensitive to UV light

Today has been cloudy and overcast where I live but I still couldn't go outside because there was a haze in the clouds. To me that means that UV can still penetrate through.

If I get exposed to UV light then I get a migraine, terrible fatigue, feel nauseated and giddy as if the ground is spinning. Over the next two days I will flare up with burning all over my skin and joints and I'll probably get a few twinges of pericarditis.

This is going to be really tough for you to take in, but for some of us daylight is a big no no. It is the biggest hardship that lupus has given me. I used to be so active and outdoorsie. Now I am cooped up between about mid-March to early October. I even have to be careful in the winter.

I have tried almost every cream, clothing, parasol and medication going and nothing stops my reaction to UV light. I can't even be under old fluroecent or halogen lights. The only ones I can tolerate are LED.

This is really tough and it might be that you are in a similar situation. It is a massive adjustment to anyone's lifestyle. Essentially it's your freedom to live your life how you want. I get very jealous of friends going out for walks or trips to the beach etc.

I would take photos of any rashes, keep a diary of your activities and the subsequent symptoms over the next few days. See if your symptoms are better after being out of the daylight hours for a week. You might get alot of information that way. Are you lightbulbs LED or halogen? It was amazing when I switched mine over.

I go out at dusk and plod around the garden.

One thing I would suggest is taking vitamin D3. Most of us lupies have a deficiency and if you are going to avoid the sun you should take it.

Keep posting on here.

I learnt the most about lupus from this site. My Rheumatologist is awesome but this is where I get my knowledge from, because people on here are living with it 24/7.

Keep posting and keep us updated.

HT 🌷

Bake34 profile image
Bake34

Try wearing thin long sleeved top and hat, it's what i have to do plus the sun screen

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