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Lupus and the Sun

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Posted 6/20/2008 2:47 PM (GMT 0)
Hey there...
Haven't been on in a while... Two kids graduating this year - one from college, one from HS. Also - trying to tackle this "lupus thing" on my own, I guess. Figured it would take a full year to figure out all the ins and outs by season.

Last year, I was diagnosed in July. I don't have to tell you that I was a mess with joint pain, fatigue, etc. One of the first things the doc told me was to use at least 30 SPF sunscreen.

We have a pool...I LOVE my pool. So - being a "good girl" I've been using SPF 50 all the time. The first time I got in the pool this year was a couple weeks ago. I was in for about two hours between the hours of 11 and 2. It was really HOT here. I ended up with the mother of all migraines...lasted 5 days. However, I didn't know if it was the sun or the heat.

Last Sunday, got in the pool again. This time I waited until about 2:30 to get in. It also wasn't so wretchedly hot here... no migraine. So - I'm figuring my migraine trigger is the heat.

Anyway - the real question. I'm noticing a significant increase in joint pain...and it seems the fatigue is worse than it has been lately. It occurred to me that perhaps I've been mistaken in my assumptions about the sun and lupus. I thought that using the SPF was a "guard" against a lupus flare. But - I'm thinking that isn't the case. Can being in the sun AT ALL cause a flare? Is the SPF just because you can burn easily...in CASE you are in the sun?

Thanks for any insight.

~Kim
Posted 6/20/2008 3:14 PM (GMT 0)
Hi Kim,

 

As far as I know, sunscreen won't prevent a flare up.  It'll just protect you from getting burned.  So the trick is to stay out of the sun as much as possible. Not easy is it!  I am much more sensitive to heat.  I'll flare up from being in high temperatures, even if it's overcast and cloudy out.  So the heat is what does it to me. 

 

the sun stimulates our immune systems which is what we don't want to happen. We want our immune systems to be suppressed and quiet.  The sun is an amazing thing!!!

 

ONe idea for the pool would be to get a HUGE umbrella and create some shade over the pool.  It might help!

Posted 6/20/2008 3:54 PM (GMT 0)
Ya...
That's what I was afraid I was going to hear...

I told an engineer friend of mine that he needed to build me a floating tiki hut. Or - perhaps I just become a night swimmer.

This sucks.

Oh well...
I do appreciate the info - even if I don't like it... lol

~Kim
Posted 6/20/2008 4:07 PM (GMT 0)
Actually - this makes me have another question...

If I've been in the sun and am having more joint pain... does that increase my risk for organ involvement?

~Kim
Posted 6/20/2008 4:23 PM (GMT 0)
I don't think it increases the risk, but that doesn't mean I'd make a habit of it, either. As far as I know, they don't really know the when/how/why of where lupus attacks occur. Cheers,
Posted 6/20/2008 5:21 PM (GMT 0)
Yes, certainly the risk is there but whether or not any organ involvement happens is unknown until it occurs.  IF you're having increased joint pain it means your lupus has become more active, which in turn can put you at risk for organ involvement.  So keep that immune system nice and quiet, and definitely become a night swimmer!!  LOL.  Actually, that might be great for helping you fall asleep..... I like the tiki hut idea.  Just make sure you have a hot mojito maker at your beck and call, and you're set! scool
Posted 6/21/2008 2:55 AM (GMT 0)
What about putting up some kind of shade on one side of the pool that you can hang out under? Otherwise, I would stick to early morning and at sundown.
Posted 6/22/2008 8:25 PM (GMT 0)
Kim, Before I was diagnosed I wasan avid swimmer. I had a poll pas already for next year so I went swimming but I didn'tr stay in the sun too long. If I'm in the sun too long I get red. I try to be in the sun when it's not hot. I' not sure if it will cause organ involvement, but too much sun doesn't help.I take Vit. D because I don't get enough sun with out it. Good luck uni-corn
Posted 6/23/2008 12:44 AM (GMT 0)

Hi Kim,

I live in Arizona so it is really hot here.  We also have a pool but we have a nice palm tree behind it so we get shade.  Also when it is really hot we put up umbrellas on stands so that there is shade for me to get under.  I have a hard time just with the heat, it is enough to make me exhausted when I am out in it and the sun just adds to it.  I usually only go swimming in the early morning or night time to avoid the heat.

Take care,

Mary Ann

Posted 6/23/2008 2:08 AM (GMT 0)

Hey everybody...

Thanks for the info...
I'm just SO tired of this.  This was sort of the straw that broke the camel's back this week...  Stupid, I know, but I'm having a hard time doing the glass half full thing right at the moment.   But - I'll get myself straightened out.

I should probably call my doc tomorrow (as I sit here - my shoulder is just throbbing).  But - I don't want to because I know he will up my prednisone again.  I was trying so hard to get off of it and had a set back in March when I went in for bloodwork and everything is still elevated.  So - have to stay on 5mg until I see him in July.  Had high hopes of being off of it and trying to get some of the 30 pounds off that I put on.   Instead - I just broke down and bought bigger clothes yesterday.  He upped my methotrexate at the same time - so I'm on 20 mg now...and that seems like it is making my skin...like, really thin...it seems to tear easy.  Hard to explain.  And, I really don't want that upped again.

Just a lose - lose at this point.

Of course - it isn't helping that I was supposed to leave on a mission trip yesterday to Vancleave, Mississippi for Huricane Katrina Rebuilding.  I was going to work in the kitchen this year because, obviously, I am not able to do the actual construction.  But, the team made a decision to drive straight through - and I am not up to that.  So - I had to bow out.  And, I know - that is my decision, but I've been so upset about it.  I've been on mission trips for probably the last eight years...it's just what I do...and, the past two have been down south for Hurricane Katrina recovery.  Grrrrrrrrrrrrrrr!  I'm just SO angry! mad

Enough complaining...doesn't help anyway.

Thanks again for everything...

~Kim

Posted 6/23/2008 3:54 AM (GMT 0)
Kim,

I had a hard time accepting all the new limitations of lupus, too. I know just what you are talking about! It is really crummy, isn't it?

Sunscreen does not keep you from getting a flare but it does help you avoid the some of the direct effects of sun exposure. The heat and the sun are not good for me, either, but, I have noticed that there are times I can be in the sun for a short time (30 minutes or so) without any ill effects. This happens when my disease activity is under control, mostly.

My attitude about it all has improved, also. It took me almost four years to finally accept my new reality. I was also a sun worshipper and would go swimming everyday with my two children. They are now grown so I have found ways to adapt and have developed new hobbies. Finding a way to shade your pool is a great idea. I swim in the shade, too, and I also need to swim after 2 PM so as to avoid the strongest sun.

Good luck and my prayers are with you!
Posted 6/24/2008 3:56 PM (GMT 0)
This is the first summer that I have to really guard against the heat/sun. I was carrying around an umbrella last week as it was 112 degrees in the shade. If the sun hit any part of my skin it caused a rash and triggered a mild flare. I guess we all just have to learn what causes flares and try to avoid the causes as much as possible.

Posted 6/24/2008 7:45 PM (GMT 0)
I haven't read all the replies but I would only get in the pool before 10:00am and late afternoon....like after 6:00pm...
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