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Sandra
06-10-2008, 12:49 PM
I'm new here, first post. :) My post is about the sun. I have had autoimmune problems since I was 18 starting with hypothyroid, then later addison's, AI early menopause, primary biliary cirrhosis and sjogren's. And Lupus is a suspect. I've not gotten the official diagnosis but I sure think it's apossibility.
Perhaps the biggest and most painful clue my problem with the sun. Although i have been told that sjogren's and sun issues are not typical it's still a possibility as well.
This past weekend was lovely. finally a weekend without snow, cold or rain. So I indulged like everyone else. It's kind of hard not to especially as I have never been told by my specialist to do otherwise. I like to be active it helps with pain and fatigue. So I went for a bikeride or two, went for a swim or two, did some yard work and went walking and had friends over to sit around the pool to watch the kids swim. Well by Monday morning I couldn't move. The pain and stiffness so terrible. Skin hot, cheeks and chest red. it's now Tuesday and i'm still moving like a sloth.
I used sunscreen and I have a UV hat and jacket and i do my best to stay pretty much covered up. is there anything else i can do? How much sun can one expect to handle and still be ok? Thanks Sandra

sits_inthe_corner
06-10-2008, 02:01 PM
Hi Sandra,

Symptoms are a funny thing, they very from person to person. You're going to have to find where your bounderies are.

For me I can handle about 20 minutes on a good day; if I'm covered up properly and stay out of the direct sunlight.

On a bad day...not even for 10 minutes. Lucky for me the bad days don't happen very often.

There's no reason why you cant bike ride. You may have to look at things like length of time and your route...how many hills and so on. Also how often ... your joints will tell you quick enough when you've done too much. Also choose carefully what time of day you are going biking. Strong sunlight and biking...probably not a very good idea. Morning or early evening is probably better.

I'm sure the others will be along soon to add some advice for you. There are several members who have great info on UV clothing.

Saysusie
06-10-2008, 03:33 PM
Hi Sandra;
Just as Lupus (and other auto-immune disorders) affects each one of us differently, so is our tolerance to the sun different for each of us. Some of us can manage and hour or two, while others can only handle a few minutes (As Sits-In-The-Corner indicated).
With reference to sunscreens; SPF numbers on sunscreens only cover UVB, the type of rays most responsible for burns. UVA is far less responsible for burning, but still can raise skin cancer risks and can still cause problems for those of us with Lupus. Only one sunscreen in five has effective UVA protection. There are ingredients that protect well against UVA, but sunlight can break down and make them ineffective if they are not formulated well. Try to find a sunscreen that contains avobenzone, titanium dioxide, zinc oxide (or Mexoryl SX), or Helioplex).
Since sunscreens are always an issue this time of year, I've placed a post in "Lauri's Lounge" with sunscreen information for everyone to read.

Peace and Blessings
Saysusie

swearimavirgin
06-30-2008, 10:43 AM
Sandra:
So like with the other responses...mine is the same. Like someone stated, everyone has their own boundaries. I absolutely miss a lot of things and like how most people can't wait for spring/summer...I can't wait until the winter. That's when I can spend more time outside and not have such severe symptoms the next day like fatigue and achy joints. I become ill just by going on long car rides and the most time I can tolerate by doing just stuff...errands and such is usually two hours and then I need a break. I became frustrated a couple of weeks ago because just when you think you have Lupus bases covered (Diagnosed 9 years ago), you find something else that you must do differently. Sometimes it's not even sunlight, it can be just heat (like when I was painting my kitchen). When I have good days I find that I do so much because I don't know when I will have another good day. So, I'm still working on my limits too.