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Lupus and the Sun

315 Views 7 Replies 7 Participants Last post by  KarolH
Hi, was out in the Caribbean in May (08) absolutely no sun or health probs that I knew of, joints started playing up July and diagnosed with MCTD in November after a flare put me in hospital with breathing difficulties, swollen joints, rash etc etc.
What a shock to discover this world! Was booked to return for Christmas had two weeks, two days factor 50 and 25 then wham, Boxing Day a red raised rash and Urine infection. Steroids were upped and skin still recovering though loads better... the funny thing is I felt wonderful in the sun and I keep reading that I should have felt dreadful.... any chance of this being a transient thing??? Anyway I am proof at how quickly things can change so be careful out there with the Sun.
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Hello Claire,
I don't know if you have posted an introduction, but I thought I would like to welcome you. I am sure the diagnosis has come as a big shock to you. Just to reassure you, you will learn loads about Lupus and become very good at monitoring your condition. I know it may not seem like it at the moment, but I have seen so many times how quickly people learn. The psychological aspects can take a while, there is a lot to adjust to, plus the pressure of explaining to friends, employers etc. We are all here to help.
x Lola

If you haven't posted an introduction , it might be an idea as lots of people will want to welcome you here.
Welcome, Claire.
I am sort of the ranting sun-hater here.:lol:
My experience, which I have mentioned so often it will probably be deleted just because the moderator is sick of hearing about it, was so sudden as to be shocking. One day I was OK in the sun, except for my eyes requiring sunglasses. Then one day my wife and I went for our walk around the neighbourhood and I did not wear gloves. Bad mistake as Kathryn asked, "What's happened to your hand?" The back of my left hand was red, blistered and ghastly. Made it home and my joints went nuts, body stiffened, pain everywhere but I guess you know the feeling.
From then on it was sunblock (50 or 75), widebrimmed hat, and gloves, long sleeves, etc.
Meds, rest and avoiding the sun as though I were a sensitive vampyre makes life liveable. But no sun for me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Thank you for reading my rant.
Hope you will be feeling better.
Welcome to the site. You will find it very helpful and the people here are wonderful in helping with absolutely very thing. I know for me it was a turning point with the disease. You will learn tiggers for you personally and find ways to make it feel just a little better at times. Sun is often the big one to stay away from as the rays can cause you to feel very bad in many way. Just remember if you do go out in the sun wear sunscreen and apply often better safe than sorry at this point lol. In any case again welcome and hope to see you in chat sometime.
Hi Claire,

Welcome to the forum. I suggest you post in the Introduction section so we can get to know you better and others can welcome you also.

The sun is my enemy also. Besides using sunscreen I limit the hours I expose myself. I try not to go out between 10am - 4pm. You also have to be careful with reflective rays. The reflection off the water is capable of causing flares also. In time you will learn what works for you.

Take care,
learning about sun

Hello again.. thank you so much for the lovely welcome, I will go to the introduction site and introduce myself... a bit new to all of this!!
Thanks for all of your input, appreciated.
Hello Claire and welcome :)

Yep, a lot of us have pretty severe sun problems here. I'm with Douglas on this one and avoid it as much as I can. I wouldn't neceessarily feel bad "at the time" but definitely would after - exhaustion, joints, rashes, blisters... not to mention the risk of second degree burns in just ten minutes (yep, been there done that).

I am careful with UV exposure even in winter. For example I have glasses that darken with UV rays and you'd be amazed how many dull winter days they do that. Many top rheumies recommend protection even in winter and I do try and use sun screen in winter too (it's easier though, less bits sticking out and hats look better on me in winter :lol:).

A lot of people need to also protect themselves from strip lighting and the light coming into houses.

Hi Claire and welcome.

I am with most of the others here in that the sun is just not our friend.

I do not think I have issues as severe as some people yet they are enough to keep me from spending days in the sun like I used to.

Hope to get to know you better.:wink2:
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