Today I have had another reaction to the sun 🌞 I've had one or two previously but today it's just really got to me and I got home from the school run and just burst into tears 😥I'd literally walked for 5 minutes to the school I had sun glasses on that covered quite a bit of the tops of my cheeks and a cool cardigan that covered most of my arms and my legs were covered too.
By the time I got to school I just could have cried and I wished I'd have taken the car. Right outside school u are allowed to park only with a blue badge which I have. (But I try to walk when I am able to) Others aren't meant to park there but they do! So I get there and there's people just pulled up there and get out and stroll into the playground a few steps and I think they have no clue what some people go through I was just fuming cos I felt like absolute crap!! I literally wanted to just cry I felt so rubbish and ill from 5 mins in the sun and just knew that by the time I got back home I was gonna b so much worse. I stood in the shade.
I get home and my face, well cheeks are red and itchy and raised and burning just like previous flares. My arms are tingling and itching but no rashes this time but not had any actual exposure to the sun.
I just burst into tears and I couldn't stop myself crying for about an hour! I'm just so sick of feeling unwell I've literally just reduced my steroids back down to my normal dose after having to up them for my joints.
Tomorrow my son has his final day at primary school to go to secondary and after school they are going down to the beach and I am so worried how I am going to cope esp now!! I had to say that I'd go cos everyone else is going and I can't let him down (as I usually do with the kids 😥 or feel I do anyway) but it's about 3 hrs 4-7pm and it's gonna kill me, one of the mums has a chalet so I can at least hide in there a bit but I'm really dreading it
Sorry for the long post I know I've gone on a lot 😬
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Sara_A
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Sorry to hear you have had such a reaction, it’s so debilitating.
I am photosensitive, it does restrict activities. unless you have suffered from this I don’t think people understand.
I use SPF 50, a hat/umbrella and solabri SPF cardigan that I drape over any exposed areas, but to be honest I avoid the sun as much as I can. I have my car widows SPF tinted. I always cover up
It must be difficult when you have children and need to be out and about with them leading a normal life.
I don’t have many suggestions, just wanted to sympathize/not ignore your post.
I have had excellent care at Guys and St Thomas Dermatology, I have a cream for if my skin reacts.
Hi, thanks for ur reply, I went to the beach party and I walked the 5 mins or do to the chalet to the shaded area with my factor 50+ on and stayed in the shade the entire time which was until 8pm 😩😩 exhausted!! And somehow my face was still red! 🤷 A few people commented on my forehead having caught the sun 🤦🤷 so my facial rash is a bit worse today but not too bad I took an extra 10mgs of pred yesterday. Today I just feel a bit wiped out and need to rest, I've just got the 1 of my kids today so it's going to b a lazy day thankfully x
Hi Sara. I was once you but I didn’t have a diagnosis. It was really hard with my kids. So in saying that, lupus doesn’t care who you are, how old you are or your job or family life or kids or your dog.
So you need to take really really good care of yourself. And even despite this you will have woops moments. Like this one. Two things: vanity hates rashes especially on our face. The basic plan for us is: sun cream every morning, a big hat, an umbrella, long sleeves etc. Mary Poppins without the medical bag. Sunscreen clothing is a good investment for a few basic pieces. Dark Sunglasses and dark film on your car windows. Drink a lot of water. This is very important. Sit in the shade. Explain to people as best you can. Most people just accept my explanation of ‘I’m allergic to the sun.” Telling them you have lupus unless it is a person you would like to trust, usually results in very dissatisfying replies. Most basic of all, get sleep. As much as you can when you aren’t running after a child with a carrot in your mouth trying to get nutrients too:). Those are tools for your tool kit. Next time walk to school with a tote full of extras/umbrella, bigger hat etc. You’re gonna be fine. Try a light coating of Benadryl on cotton on your rash. Just a bit. It may work. Good luck!! MM
hi Sara, at the moment I have rashes all over my body but especially around my breast area going to my back, my arms and face. Saw my rheumatologist who wouldn’t look at the rashes but was more concerned with my pain so gave me a local anaesthetic in my hip area as he doesn’t want me to have my steroids increased. I have been referred to a dermatologist by my GP as well so I have to wait for that. When I sit in the garden I have three of those huge banana shades overlapping so I am always in the shade. I am a red head and have burnt terribly in the past and it wasn’t until I was about 50 that I realised that other people’s skin didn’t hurt in the sun! Mine does after a very short time. I feel so sorry for you having to suffer doing basic things in the sun with your children. It’s a nightmare. Do they understand that you are ill and why? All we can really do is cover up as best we can with lots of factor 50. I have one sort for my body and a special face one for my face. I have just bought a factor 50 spray for my head and hair! Never heard of it before. I appreciate though that none of this stops the pain or the feeling of complete exhaustion. I send you a big hug and probably like me you pray for the rain and darker skies.
i had something similar got tested at ninewells dundee and they found a reaction to perfume in face etc cream. There is a sunscreen they make in Dundee but I keep out of direct sun now
Sorry to hear that you have reacted. I never go out without an SPF50 hat, sun cream all over even on overcast days, long sleeves, and long trousers. That way I avoid any reactions. Hope it gets better soon.
So sorry. It is so hard and no easy solutions in the sunny weather. I sympathise. The sun always finds a bit of you not covered, and loads of clothes and hats make you so hot and uncomfortable. I do hope the school outing is not too unbearable I just send you my best wishes.
First of all I am so sorry you are feeling so bad at the moment - been there bought the T shirt etc. etc. - I have Addison's disease (as well as lupus) which is adrenal insufficiency and I have to monitor my steroid on a daily basis (if not hourly etc. if I am put under any pressure) - pressure on the adrenal glands can even be going into the sun - whereas any person without this problem would not feel their adrenal glands rising to the occasion to support the heat they are experiencing - with someone who has an adrenal issue you will feel it and you either have to up your steroid to accommodate this or stay indoors as I do when it is really hot. My husband puts up a screen on the windscreen of the car when it is hot so when I get in the car it isn't blazing but I still feel dreadful. If you start what I call 'drip sweating' particularly on the face or back of the neck you are not on enough steroid to cope with the stress you are putting your body under. Bear in mind that your adrenals have to cope with cold weather too as this would be a stressor so you would need to accommodate that as well. It is worth mentioning here that the thyroid gland is the thermo (heat) regulator and works in conjunction with the adrenals. Another symptom of adrenal problems is crying - so that is another clue - you will have to adapt when the weather is hot and perhaps drive instead of walking - walking can be done when it is cooler - wear a hat the head can overheat badly and cause issues and there are companies that sell ice garments that can keep you cool - I can let you know the names of them if you wish. Hope this helps.
Sending you a big hug. You should be proud of yourself for carrying on when you are feeling so rotten. It is so restricting isn't it. Most people complain about rainy days but I love them! I have a uv50 hat and a uv50 umbrella. Uv50 foundation (from IT Cosmetics- Your Skin But Better CC+ Cream Original SPF 50+) to cover up blotches and protect. You can get it from Boots a bit pricey but you only use a bit and it lasts ages. Take care and hope things improve for you. x
Hi there Rima28 - thank you so much for your kind words of support it really lifted my spirits when I was having a really low day. May I return your good wishes to yourself and all other Lupus sufferers particularly those with 'Sun issues'.
Whilst writing can I recommend a sun cream that was developed by a Skin cancer specialist - it is really good and not that expensive - very little needed on the face and you can put your make up on without it going all greasy.
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