I'm confused about the sun

Hi.I'm new here.I'm 18 and have been diagnosed with lupus 1 year ago.I'm from Bosnia and i live in a small town and don't know anyone with lupus in my age,and don't have anybody who i can speak to.Can you tell me more about the sun,can i go to pool with friends,of course i have a suncream 50+ and i would be all the time under a parasol.I don't have any symptoms now and go to doctor every 3 months.:)

17 Replies

  • Hi Coa111, While I'm no expert I would say if you're not having any problems and are being careful with your sun protection go ahead and enjoy yourself! You are so young and these times are precious so do not let Lupus spoil them for you. 😎

  • Thank you ^^ 🙌

  • I would agree with the reply you already have. If you are not showing any symptoms go ahead. I am sun sensitive and have to cover myself with clothing - only face and hands not covered but with Factor 50+ sun cream. I did manage a holiday to Crete recently - our first holiday in the sun since my diagnosis 19 months ago. I sat under an umbrella as much as possible and wore a floppy sun hat too. I also wear rash vests in the sun, as they have Factor 50+ protection too. But you must also remember that lupus is different for everyone. No two people have the same combination of symptoms. I hope you can have fun at the pool with your friends without being ill. Good luck.

  • That sounds great, but you haven't said how you got on! I'd love to know as this is all new to us too (my daughter, 18). She's doing A level exams at the moment so has just been staying indoors (revising anyway). But once they're over, next week, she can start experimenting with going out in the sun. Really interesting thread!

  • Last year i was so scared of the sun,because the doctor said just DON'T GO ON THE SUN and i was just like okaay.I was in house aaall day.But than my doctor said that i could live normal just to take good care,and i'm like realy? I was in house all summer xD it's hard when i don't have anybody to ask,but now it's great,and thanks so much.p.s my english isn't so good :)

  • Cao,

    Ja sam isto iz Bosne, ali ja imam Mixed Connective Tissue Disease, sto je isto u porodici Lupus. Ako imas jos kakvih pitanja, posalji mi email. Mozda necu imati odgovor na sve, ali ako mogu da ti pomognem, ja cu da ti odgovorim. Sto se tice sunca, nemoj da budes na suncu kad je najjače. Izbjegaji ga. U jutro i poslijepodne je ok. I stavljaj faktor 50. Pozdrav. A

  • Hvala puno,ako budem imala pitanja,javicu se u svakom slucaju.Pozdrav ☺

  • Nema problema. Tu sam ako treba pomoć. Znam da su ove bolesti jako zbunjujuće. Mozes da se super osjećas jedan dan, a drugi da te sve boli. Ali, glavu gore, pozitivno razmišljanje i nemoj da se sikiras jer stres je najgori za ovu bolest. I jedi zdravo sto vise mozes (Izbjegaji gluten sto vise mozes i od mesa jedi piletinu, curetinu i ribu, jedi puno zelenog povrća - sve sto je zelene boje je super zdravo, Izbjegaji mliječne proizvode i sokove iz prodavnice i šećer i slatko (na internetu imas brdo recepata za kolače bez šećera o brasna koji su super), jedi šaku sjemenki dnevno), vježbaj kao dugo hodanje, plivanje, yoga, pilates i spavaj 8 sati u toku noci. I čim osjetiš da si u nečemu pretjerala, daj sebi pauzu da se i psihički i fizički oporavis. I piši simptome. Imaj jednu svesku u kojoj piši koje simptome si imala i kad i sta se desilo ili sta si radila dan ili nekoliko dana prije nego si dobila te neke simptome. Da znas sta ti pase, a sta ne i imas nesto da pokažeš svom Dr kad odes da ga vidiš. Sa Kupusom mozes da živiš normalan životni vijek, ali moras da paziš vise nego ostali da se ne sikiras, da jedes zdravo, da vježbaš i da se odmaraš.

  • Your English is just fine. Let us know how you get on in the sun. x

  • Hello, my daughter is 15 and was diagnosed when she was 12, and her main problem is the sun. We live in the SW of France so it can be very hot in the summer. She has managed to find a happy medium and still goes to the pool with her friends but tries not to be there at midday. When it is really sunny she will put a UV vest on. You can still have plenty of fun, be sure to re-apply your cream regularly, especially on your face which gets most of the reflection from the water. My daughter knows when she has had too much sun because she starts to get patches all over and her face flares up, and often a few days later she gets quite tired and her body aches.

    Remember, many of the precautions you make with the sun are precautions we should all be taking. Good Luck and have a fun summer

  • Hi I'm 23 and was diagnosed when I was 7 so have been living with it a long time. I never had any problem with the sun until this year. I could go in it all day and abroad and sit in it for hours with no problem I even got a tan 🙈 but I had my first daughter last August and I live in the north East of England so we have only had a couple of sunny days so far and it's really affecting me I am having to wear a hat and factor 50. And even then im stil flaring but I would say trial and error enjoy ur time symptom free I was quite well until I had a big flare at 19 and haven't been well since. Personal message me if u have any questions it can be quite lonely sometimes and not many ppl understand so having someone to talk to can be important x

  • Hello.

    Many lupus patients are sensitive to the sun. This means that if they catch the sun, they start to feel poorly. I am sensitive and so I have to be very careful not to be in the sun. If I'm not careful, within hours I start to feel flu-like and this can trigger a flare up. So what I do is regularly apply sun cream (high factor - 50 is good) sit in the shade, and only go outdoor swimming later in the day - after 4pm is good.

    This was the hardest thing to get used to when I was diagnosed with lupus. But I was glad I could finally understand why the sun would make me feel unwell, and take steps to avoid this.

    Take care x

  • I love to be outside in the summer yes, I do have more lupus lesions during the summer, but as my Doctor and I talked last week, it is give and take. If you feel like it go outside in the sun go, if it starts to bother you get out of direct sunlight. We have to enjoy life regardless of our condition! I get lesions on my feet sometime and can't wear shoes but, that does not bother me, I don't like wearing shoes anyway. I go barefoot all Sumer anyway, and a lot in winter also. You learn to live with what you have! Enjoy life!

  • Yes you do learn to cope with what you have. Yes my doctors and I have also discussed the give and take issue also. I love to be on the lake in my boat fishing so...........but life goes on enjoy it.  Fortunately  for me I live in the southern part of the U.S. In Alabama and it really doesn't get  extremely cold here. So barefoot in the winter here is not a big issue. This past Christmas Day it was almost 80  degrees Fahrenheit  here. 

    Thanks for your comment. 

  • Thank you guys ^^ 🙌

  • Hi coa111,

    Whether I'm new in an area or not, I usually do not know anyone willing to discuss issues re: lupus. I have been diagnosed with SLE for more years than I care to count. I have gone to the beach with sunscreen on. I have it on now although it is cloudy and I may not go outside. I find it's just easier that way. I usually leave for the beach after 2:30pm and keep a light cotton cover-up on when I'm not in the water. I also keep my head covered, head scarf or something. I have sat on the beach under a tree while camping, moved with the shade while camping. I turn my sister down re: sitting on the porch in the sun and accept the deck in the shade, etc.

    It's a learning process. I used to have a heavy terrycloth coverall. I roasted in that.

    I mentioned my practices on the MB and had people jumping all over me. This works for me but apparently it would send some people into the hospital. I'm glad that it works as I live 4 blocks from a lake with a nice shoreline. I wish you the best.

  • It is a good idea to use sunblock any time you will be out in the sun for more than a few minutes. Some people with lupus are very sensitive to the sun. Some people with lupus aren't bothered by the sun. Try going out, with sunblock on, for short periods of time in the morning before 10 and in the afternoon after 3. See if you feel OK. If you feel tired and sick, if your joints hurt, or if you get rashes. Then the sun is a problem for you. It is good if you are under a parasol, but remember, the sun is reflected off the water and the pool deck, so it can still affect you.

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