[Jesse88]

Hi everybody,

Though I have a dx of lupus and Sjogren's I don't have any problems with the sun at this point. I always wear sun block and a hat if I'll be out for any length of time, but on our last vacation we were outside a lot and there was no way to avoid the sun completely. I know I got a lot of sun because my face was red briefly and I got a tan on my legs for the first time since I was a child. However, I had no ill effects from all that sun. Does that mean I don't have to worry about it? I'm going to visit family in Florida for a couple of weeks and wonder if I need to go to any extra lengths to avoid the sun. Can the disease be progressing or can I be affected by the sun in some other way even if I don't feel it? Are the only people who have to avoid the sun the ones that get ill or get rashes?

Thanks for your help!

 

[onetay]

Jesse,
I would have to say that you should avoid the sun when you can. For years it did not seem to affect me and over time I found that it did. That is how we found out I had sle. Just remember it is always safer to be safe than sorry later lol, I hope that you enjoy your visit and have a lot of fun.
Tammy

 

[lazylegs]

Hi Jesse,

Not all Lupus patients have problems with the sun. You may be one of those lucky ones. I would still advise using sunscreen as a skin cancer precaution.

The sun does not always make me break out in a rash if I am wearing sunscreen. It does however make me feel weak, nauseous, and feverish. If you start to have any of these type of symptoms you may be sun sensitive.

Take care,
Lazylegs

 

[Jesse88]

Yes, Tammy, that's what I was wondering about....can it be doing something bad even if I don't feel it right away? Your experience seems to indicate that it could.

Lazylegs, you're right about the sunblock. I use it every day but don't worry about getting a little sun on my hands or arms since I need it to produce Vit. D. I think the recommended amount is 15 mins. three times a week. But with lupus, that could be a problem for some people. That's why I'm wondering if I can risk any sun exposure at all.

Thank you both, for the information.

 

[Lily]

Hi Jesse,

Usually there would be other signs you are sun sensitive apart from the rash, like fatigue extra aches and pains etc. But we should all be careful regardless I think, I have known some here who were not sun sensitive but then developed it. There's always the possibility it is doing kidney damage and unless that's checked there would be no way of knowing.

My own symptoms include feeling like I have been hit by a bus, usually a photosensitive rash/rashes, increased joint and muscle pain and to my surprise when I started monitoring my urine intermittently I always have blood and protein after sun exposure. That one was a shock, but at least I know now and can take measures to combat it. Some sun exposure is inevitable of course but I take as many precautions as I can.

love
Lily

 

[LolaLola]

Jesse, I am one who is badly affected by the sun, so my views are probably over cautious. I just wanted to point out that sun sensitivity can vary so one good experience may not mean you are safe at all times. Also the effect of the sun is cumulative, you may get away with it for a time and then your body suddently revolt. As I said, I am probably overly cautious, but do bear it in mind.

One big plus, I am 51 and look about 15 years younger facially due to no sun. Shame the body looks so old though.
x Lola

 

[Jesse88]

Lola and Lilly, thank you for your posts. I know now what I have to do. I'm going to assume there is some negative effect to the sun exposure, even if I'm not feeling any, and take the precautions necessary.

Thank you all for answering my question. It's great to be able to talk to the veterans who've been through the things I haven't experienced yet. There's nothing like the voice of experience.

 

[Douglas]

Howdy Jesse,
I applaud your conclusion. Coincidentally today I began using sunblcok again. Living as far north as I do (c 51 degrees) in Calgary I had a good stretch in Winter when the sun was low enough that I could do without but today - back to the grease.
I dislike the feel, I dislike the smell, I dislike when the stuff gets in my eyes but it sure beats what happens when the sun gets to me.
So sunblock and good sunglasses, even if you do not need the three layers of them that I sometimes need.
I think the only sunshine I can take now is in a van Gogh painting.
Enjoy like living like a vampire. :lol:
Douglas+

 

[confused1]

I use Neutrogena sunblock, SPF 55, every day even if I don't plan to go outside. It's a good formula, totally non greasy and soft and once it's on my face I don't feel it at all. Not like most sunscreen. I think it's called Dry Touch or something like that (the tube's upstairs and I am not in the mood to climb up and look :lol.

Sun has always made me sick, I believe. Nausea, stomach pains, fever, aches and generally feeling like I have the flu. Lily, I wouldn't have thought about increased blood and protein in urine after sun exposure, but it makes total sense and I bet you're right. I'm just thinking of the horrible lower back ache I sometimes get and the general lethargy and sickness.

Good thread.

Sunny

 

[verythankful]

I know it's a little late to answer this post, but just in case someone who's also very photosensitive should search here, I've found the most/best sun protection from sun-protective clothes and lengths of sun-protective cloth. Even going to the dentist where there's just *so* many strong lights I wear everything sun-protective and then cover up with a length of the cloth and then put sunscreen on my face and neck (exposed portions.) I, like onetay, found out I had sle by first noticing that ordinary house light bulbs (or office fluorescent bulbs) were burning me as painfully as a newborn on the beach. The same for t.v. sets and computer monitors. For me the photosensitivity has worsened, but I may not be typical. Do take care to shield your eyes as they can get burnt pretty badly and in time could damage your sight (your ophthalmologist will have the best advice for you, incl. how dark to make sunglass lenses, their color and whether or not you'll want protection that surrounds both eyes entirely.)

I know it's a drag, but I hope this helps a bit.

p.s. If you do have to live the vampire lifestyle, like Douglas says (I always think of it as being the third child in the movie "The Others," lol) make sure to have your vitamin D checked regularly as this can dip severely and just add to the struggle you already don't want.

Take the best of care