Author Topic: Sun exposure  (Read 463 times)

Gorn

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Sun exposure
« on: July 27, 2018, 06:16:04 PM »
So apparently a lot of time out in the sun can trigger an autoimmune response.
Am I the only one who didn't know this?
I am under the care of four doctors and not one of them mentioned this to me.

Had a GREAT day yesterday. More energy than I can remember having in a long time.
I was doing all this yard work out in the blazing sun. Half the time with my shirt off. Hedge trimming, weed whacking, raking. 
It felt so wonderful to get all this stuff done.

Then WHAM, full-on fatigue today. 
In between basically napping all day today, drooling on my pillow, and feeling like a zombie that can barely shuffle around the house, I was doing some research on Sjogren's and fatigue, and a bunch of the comments were about avoiding being out in the sun. 

The medical community just seems so poorly informed about all of this. 



irish

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Re: Sun exposure
« Reply #1 on: July 27, 2018, 08:17:55 PM »
Yes, sun exposure is hard on us. There is a reason this occurs that my immumologist explained to me but I have long since forgotten. I have been bothered by sun exposure long before I was diagnosed so always wore long sleeves when outside in garden.

Now when I go to lake I wear a mans long sleeved cotton light colored shirt, lots of sun lotion and will put a bath towel over my legs when I wear shorts. I also have found that facing the lake even with good sun glasses results in what feels like sunburn of my eyes. Sooooo, I turn my chair around so that I don't get the reflection off the water I my face.

Even with all these precautions I usually will have 2-3 days of exhaustion after my day of fun. I find that the humidity and wind will bother my lungs....I do have asthma.....so on the bad days I will use a face mask to protect my lungs.

We have had a lot of discussion about sun exposure and I bet you never happened to read those posts. I also will get a slight blush on my arms with a prickly feeling from the sun. When I drive I place hand towels over my arms to protect them and a towel over my legs that get the sun. This looks funny as heck but figure just the semi drivers get to see this. Such is my life. lol

Hope you can find a way to do your chores. Remember that cloudy skys do not protect you. Doing yard work, etc works better in evening on the cooler days. Good luck. Irish

Joe S.

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Re: Sun exposure
« Reply #2 on: July 27, 2018, 09:18:00 PM »
I try to take a long trip each summer to see my daughter and her family. It is 4 days on the road. The car is air conditioned and I have screens on near side window to help block the sun. I wear blue blocking sunglasses. I wear SPF 50 clothing (long sleeve Shirt and long pants). Clothing is also treated with SPF 50 sun block. I have a towel to put over my lap, Gloves and a big floppy SPF 50 hat. This year I still had trouble with sun and heat. i tend to drift off to sleep for no reason.

My wife does all of the 8 hours of driving. I do not help load or unload the car any longer. I get as much sleep as I can. I hope when we visit family I have a good day and do not have to take the next day off. I have been taking mornings off. The hotel we are staying at has a parking garage which makes things easier.

I am not looking forward to the drive home as I will have much more sun during the drive.
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Gorn

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Re: Sun exposure
« Reply #3 on: July 28, 2018, 12:44:48 PM »
Thanks for the suggestions. Hopefully it will improve my overall fatigue if I take more of these precautions.

Skylar

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Re: Sun exposure
« Reply #4 on: July 28, 2018, 03:23:13 PM »
I'm surprised you weren't aware to be careful; I know you've been a member here for awhile and everyone complains about the damage the sun can do.

I've avoided the sun since I was a kid - it just sucks the energy out of you. You should also be aware that some of the medication we take make you more sensitive to UV - and can burn more quickly which is a good reason for good sun screen and protective clothing.

Unlike most flares which can take weeks or months to improve, I find it only takes a day or two to get over the exhaustion caused by sun exposure.

Hopefully you'll be feeling better in a few days.

Carolina

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Re: Sun exposure
« Reply #5 on: July 28, 2018, 04:07:39 PM »
For most of my life I adored the sun:  the more the merrier!

I know this makes me an exception.  The sun made me feel better, not worse.

I spent hours and hours in the sun every day, and wouldn't miss 'peak' (10-2) for anything.

Fortunately I have strong skin and have not paid a huge price for my sun worship, even at 76 I have very few wrinkles.

Now, however, the sun on my skin sometimes feels almost painful.  I spend very little time outside due to disabilities, and when we go to our association pool, we usually go late in the day.  One reason the sun is uncomfortable now, I think, is that I have severe Small Fiber Neuropathy, and the sun makes the nerves hurt.

Still I love to sit in the sun to dry off after the pool, the memories of sun worship are baked into my genes I guess.

Oh, my sun worship had nothing to do with WORKING in the sun, just basking like a lizard!

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lorigacc

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Re: Sun exposure
« Reply #6 on: July 30, 2018, 06:56:36 AM »
I do love the sun and try to soak it in when I can, cause it's so short lived in my neck of the woods.  I really should not be in it because of the plaquenil I am currently taking, so I try to do it in short spurts.  I never thought about it triggering an immune response....but I have been having a major flare for about 3 months now, which makes my wonder.  Also, under tremendous stress with family issues, so who knows why the flare started.  None of my doctors have ever mentioned the sun being a factor, but I'm not surprised.  Most of what I have learned is from research, learned experiences, and help from people on this board.
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Deb 27

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Re: Sun exposure
« Reply #7 on: July 30, 2018, 11:01:57 AM »
Ugh, so sorry you got bitten by the sun yesterday. It's really tough on most of us. No doctor ever told me about it either. When I mentioned it, he said it was a coincidence, that perhaps when I was outside, I would overdo things and then I would feel bad the next day. I don't do yard work, so that is not the case with me. If you take plaquenil, my doctor also told me it could give a rash upon sun exposure Now, I wear a hat, and SPF clothes. Heat and humidity cause flares for me as well as the sun. I think I've even seen SPF shirts in Wal Mart and Target. A lot less expensive than the Department Stores. Take it easy today!
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SjoGirl

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Re: Sun exposure
« Reply #8 on: August 07, 2018, 10:31:13 AM »
It may not just be sun, but heat. If you have not done so consider looking for something like a frogtog, which is a piece of fabric which will retain water. You can place it on your neck or elsewhere to help keep you cool, it's a life saver.

FYI a number of my docs did know about issues with sun exposure, but not all do. When I first was sick I covered up like a nun with sunglasses in the summer. Now that meds have helped me get things under control I wear 55+ or higher SPF and try to stay out of mid-day sun. Sip, not gulp fluids (gulping can lead to too much going to the bathroom which can lead to dehydration). Like others I were some SPF clothing at times.
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wendyoh

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Re: Sun exposure
« Reply #9 on: August 07, 2018, 11:37:41 AM »
yes I agree with Sjogirl the heat and sun are both problematic for me. I am fair skinned but never minded heat/sun until I was about 39 y/0 became vulnerable to heat stroke easily and then by age 49 pretty much had to avoid being outside during day if its above 55 or so and sunny--sometimes can get by if real cloudy on cooler days, winter ok. But the heat can get me too even at 9pm if its still 80 if i go out for a good walk then the next day I can be more messed up with fatigue and more pain.

not fun I agree..........so many restrictions now with sensitivities gets to be a drag
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Tiff123

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Re: Sun exposure
« Reply #10 on: August 16, 2018, 03:01:38 AM »
No doctor never mentioned it to me either, some even suggested I do more IN the sun, you know live a little!  :-X Party and stuff. :o

I am fair skinned and naturally blonde. If I don't full time flare up after a hot humid day with red blood spots on legs/lower stomach and puffiness/dry skin I will feel lousy in general or puff up in my feet/ankles to the point light bruising can even appear.

I try to limit myself in the heat, terrible summer in New England this year with humidity compared to last summer. Off and on flares and or exhaustion/feeling crappy a lot. Hoping fall is a breathe of fresh air finally. I am in the AC almost constantly.

Ironically in the winter there was a period of two weeks where it was below zero almost every night and I felt pretty good. :D Most were complaining around me but that icey coolness for some odd reason seems good for my skin to breathe in.

I don't get it, but this autoimmune stuff is a trip. I am 38 now, was diagnosed two years ago after a series of strange purpura rashes all over my legs showed nothing but being tested positive several times for sjogren's which I still am trying to figure out at times.

I was always a big swimmer and loved being outside. I still can but I prefer an indoor pool now and if I do exercise INDOORS I have to cool off asap afterwards.

I see people jogging outside in the summer and just..... :o

Humidity and rain just kicks my bum as a combo. A lot of rain this summer. You feel like a sweaty tired out bubble. I am not even over weight either so it is odd how much the heat can get to me in long periods. It was so hot around the 4th of July one night I even climbed into a lake near my house at midnight just for relief. ;D