Sunny weather and flares, help!: Am I the only one... - LUPUS UK

LUPUS UK

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Sunny weather and flares, help!

Ilovepuppies88 profile image

Am I the only one that flares up in this heat like there is no tomorrow!!! Cold weather not many flares for me, but heat and sun.. well that looks like a big fat NO going forward.. its been a while since I've had a flare all over like this and it's getting me a bit down.

Does this mean no more sun, tanning and holidays? Am I putting too much emphasis that it is all down to lupus..

Any tips, advice would be much appreciated x

39 Replies

Photosensitivity is common in people with lupus: 40% to 70% of people with lupus will find that their disease is made worse by exposure to UV rays from sunlight or artificial light.7 Jun 2021lupus.org › resources

UV exposure: What you need to know | Lupus Foundation of America.

So far in my neck of the woods its a good summer for me as its cool enough to still be able to cover up completely . Took me some time to make the connection but now I have I've realised its just not worth bad days indoors with joint flares and migraines...maybe I'm just older and wiser. Tanning is a big no especially sun beds . Off out to the beach with the dogs now in hat,sunglasses,factor 50 ,wellies leggings and coat . . But needs must xx

Thank you for your reply spanielmadlady. Appreciate it. Enjoy your day X

And you ...... 🤗

I was a real sun worshiper pre Lupus diagnosis,and now I experience the exact same issues as you describe.I wear factor 50 and always wear a sun hat.The hat really does help,it may not be the height of style but it does give my face more protection than I ever envisaged.The down side though is the flat sweaty hair !Worse of all though is the fact that the extreme heat makes me feel drained.Think ordianary lupus fatigue with bells on.

I think its something we have to live with and manage in the best way we can.

Thanks dottylotty999 for replying. I thought I was pretty good in covering up but definitely will take your advice on the sun hat and change from 30 factor to 50 all over. Did feel the extreme fatigue and still do a bit. I agree manage it as best as we can! No more sunbathing lol X

Having never really been one for hats pre lupus Ive actually got to like them and have a collection of 3 ...4 if you inc my winter woolly hat which I had on the other day in the wind .I also used to have short pixie cuts styled with clay...now it's a low maintenance Bob 🙄 to try to reduce hat hair ( sweaty inc) .I think alot of it is getting into the habit and not to be fooled by cloudy days or cool days xxx

Yeah, I cover up it's always a bit of a no win situation sometimes. For me, it's got pretty bad the last year of two, not matter covering up, so I choose an early rising walk or a late evening walk to get some escape and fresh air.

You're not alone. Take care x

Lottie

Thanks lottie. I might have to implement that too rather than going out in the middle of the day, see how it goes. Thank you x

I’m the same, use factor 50, sunglasses, sun hat even uv sun cardigan at times. Never sit out in the sun, just can’t cope with it. Fatigue is much worse too. In fact today when I was out for a short walk someone asked if I was going to Royal Ascot with my hat on, 😂 😂 as if.

I’m more of a cold frosty, but sunny day where I need layers on, love those sort of days.

Royal ascot must have been looking fabulous Elizabeth! :) Thank you for your message. I will take all the advice given today from everyone, just bought a huge sun hat! X 50 factor is going on too!

happy tulip, coolibar do them, I’ve got a few, although they are rather expensive, well worth it though. I’ve also got a couple of uv umbrellas as well and a couple of uv beach tents too. Not that I go to the beach that much. X

I have never seen a UV cardigan. Please can you share where you got it please?

UPF SO+ Excellent UV protection

丰 Coolibar®

Quality Sun Protection

coolibar.com

MADE IN CHINA

RN 100928

Thank you

You’re welcome x

I am very photosensitive Ilp 🤠n😎are a must this time of year!! Being photosensitive is one of those unique things with us lupies..n we all have to find out own way of coping.

I have invested in rash vest n rash leggings which I wear under loose fitting trousers..they are UV protective (50+) as I can't wear sunscreen (it inflames my skin).

I also have a UV protective umbrella for when I'm stuck outside. It's best to avoid going out between the hours 11am-4pm as this is when UV is at its strongest.

I have UV film on my windows at home too to block out harmful rays. Be careful when sitting by a window and in the car.

Lupus UK have good info about this. If u go to their page n scroll down to Eclipse u will find out loads about light sensitivity. Mine is so bad I also have to beware of indoor lighting..I've had to replace my bulbs indoors and can't use my kitchen light as it's a flourescent tube!!

It's tricky but with time you'll learn what u can n cannot tolerate..were all the same but different!! 😹You're not alone 💜🌈😽😽xx

Thank you krazykat26. Loads of grest tips and advice. Thank you for your support. Xx

I’m in Turkey on holiday, I’m very sun sensitive. My hats are my saviour, big brimmed ones. It’s cost me a fortune on sun cream as I wasn’t offered prescription ones but it’s a necessity. I’ve been using Ultrasun factor 50+ tinted for my face, gives me a nice glow, I am super paled skinned. I wear shorts but have been using Again Ultrasun factor 50 mixed with fake tan, it’s my morning ritual, lasts 8 hours. I stay out the sun, sit in shade, I do feel fatigued a lot but just go with what my body tells me. I don’t wear vest tops anymore as my rash tends to come out in my shoulders and back, but trying to control it with dermovate. It’s finding tops that are cool. I quite pleased with myself, it’s my first year with a diagnosis, you just have to change a few things to enjoy your holiday or even a sunny day back home. Don’t forget the factor 50 lip balm as well. Best wishes

I don't think we will ever stop learning Bobby...I'm 8 1/2 years along the road x

I’ve had lupus for 12 years and like everyone else I learn to live with it. I think it’s important to remember we are all different. I too love the sunshine and outdoors. When we go on holiday abroad which hasn’t been for a while I do enjoy the beach. I always wear a hat and sun glasses covered in sun cream and sit under a large umbrella. This is total relaxation for me but I do get tired but it’s a nice tired if that makes sense. I think you will learn what upsets your individual lupus . Good Luck 🤞 ❤️

Hi

I too have flares in the warm weather. When I asked my rheumatologist why he said it’s the swelling from heat that then puts the pressure on my joints. I always found it weird that it would hurt so much in the warm!

But I didn’t get it all the time, sensible in the sun so there’s no reason you have to miss out.

Hope you’re ok

Just learn to rock the Margot from “The Good Life look” - kaftans and wide brimmed hats, with a summer parasol. We will be chic and debonair. Sophisticated beach goers

Just don’t let the world see our giant ankles and feet puffing nicely underneath.

As everyone says you learn to find your way, just never let lupus take away everything you enjoy. There are clothes that prevent uv getting through, big hats, long sleeves, factor50 and shady corners.

For me a day like today will be an indoor one , trying to stay cool day as my joints are already swollen and head feels like it’s in a vice but yesterday I walked a pupil to an activity and had a lovely time in the sun. In my big floaty dress, (hides everything no more bikini diet for me) and factor 50.

Find your summer style and listen to your body. It will tell you in no uncertain terms.

Krazykat26 profile image
Krazykat26 in reply to Hamptons

😹I like that Hamptons🤗Now I'm thinking I might invest in a kaftan!! 🤔Stay cool as you can 💜🌈😽😽xx

Showing our age with Margot and the good life lol.😁 I love maxi dresses ,leggings and long shirts.the place I forget the factor 50 though is the top of my feet in sandles 🤦‍♀️.my head was in a vice too yesterday xxx

Oh no, stripy sunburn is the worst!! I took comfort that due to sun caution as was only member of staff managing this week. Small moments!

Thank you Hamptons. Sounds like we are all going to just look fabulous when we're out. A kaftan does sound good! Might have to invest in one just like krazykat! Sending loads of love xx

No you're not the only one. I've been pretending since my diagnosis (18 months) ago that it would be fine. Then 3 weeks ago after not being bothered to put sunscreen on my feet, I woke up with what can only be described as feeling as if someone had stamped on my left foot and I couldn't put any weight on it. This continued to get worse and more swollen until I actually couldn't find any shoes to fit. Moral of story - avoid the sun or be bothered to put on SPF50. Now just convincing myself that my Solbari hat was worth the £41.00 (it was btw) and that I look like Audrey Hepburn instead of the Lady in the Van. Btw, I scratch especially on my hands and my blood feels like it's boiling. I also get little pockets of fluid where the sun might catch me. Enjoy the hottest day of the year - apparently. 😓😁

Thank you Cavendishcool. Not leaving the house today, just not worth it. I'm just putting more things into my shopping basket so I am full equipped if I need to pop out. Think I might stick to going out after 4pm going forward if must but definitely try to avoid it as much as I can. I'm sure you pulled of the Audrey Hepburn look 😊 xxx

You made me laugh with that comment. I am certain you are far more like Audrey Hepburn. 😍 xxx

Thank you spanielmadlady. Sending loads of love xx 😊

We're a supportive group hun n we don't tolerate bullying!! You're with friends here 🤗Always ask questions.. we're all dealing with this stuff 24/7 and this forum is invaluable in helping us to cope. I've learnt more about autoimmune illness here than from any of my doctor's!!

Of course we can rock the kaftan look too!! Have a great day indoors..I'm staying in too!! 💜🌈😽😽Xx

Well said Kat. You are the Queen of cool 😍 xxx

Yep agree with all. Sweaty hat head and sun glasses and factor 50. 😆 if I catch the sun even being out for 20 minutes it's spots and rashy red face and feeling rough for days. I've got the biggest sun umbrella in the garden but even then I can't sit out for long unless it's full shade. I have got uv sun umbrellas now so sometimes use that instead of a hat when it's really hot . You find what works for you best really. Just sun between 10 and 4 is a no no.

Also wanted to say I’m sorry seeing that someone has been rude or mean to you. It’s just not necessary, if people are going to be unhelpful then just don’t post! This is meant to be a safe place to support other people with Lupus. I have had it some time now but I am still learning new things so actually it really helps when people ask things as it helps me understand it better too. Sometimes it helps me realise links! So ask away my lovely, it helps all 💜

Photosensitivity seems to be on a continuum and you are finding where you fall. Unfortunately, it sounds like you can’t tolerate much sun at all. It is a bit depressing at times.

I always recommend a hat with a face veil. The problem is if you are on the water or beach light will be reflected and a hat won’t work. Try Coolibar for an effective hat.

The only time I had an actual butterfly rash and systemic flare was after a ferry ride in serious sun with a good hat. The veil is life-changing! 😀

It may not be the heat but sun getting in little by little. We have lots of tips for you.

XxK

10 truths about lupus and uv radiation from the Lupus Foundation of America:

lupus.org/resources/10-trut...

I love the love 💕💕 from 99 percent of the folks here. All unique and everyone should feel valued. You are doing better 😉 than you think learning to cope with lupus is such a personal thing, but there's lots of good comments of ideas and support. Some days will be better than others. But your mindset of asking questions and seeing a way through will get you far. X

We are all weird and strange and odd, different things affect people differently and none can compare. For me, sunscreen and hats help, but unfortunately 15 mins in the sun even with all the protection and I am coughing up blood, have a bad head and pass out if Im outside for much longer. Freaks people out but I guess it's my abnormal normal haha. Other people get rashes, others flare, others feel dizzy or off.

Hopefully just the added sunscreen and protection and you'll feel much more ready to attack the day and enjoy the weather xx

Thank you lottielou96. Everyone is just so lovely. I'm so glad we have this forum and we're here for each other. Loads of good tips and advice. I'm super ready now if I need to go out. Hope you all had a fab day and a great weekend xx

I gave all that up years ago, if I do go out I always cover in 50 plus dun cream.

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