The Lupus Forum banner

1 - 15 of 15 Posts

·
Registered
Joined
·
4,968 Posts
Discussion Starter #1
Hi Everyone,

Just wanted to share my experience with all of you. I have said that in the last 4+ years the only bad thing that happens to me if I go in the sun is a rash that presents like small, fluid filled blisters that itch so bad it is maddening. I get these typically on my back, arms, chest and a few on my legs. If you itch them they multiply quickly and it only makes the itch worse.

Yesterday I spent the day with a friend and we were outside for some time. Last night I started with the chills as if I had a fever but I did not after taking my temperature it was normal.:rolleyes:

This morning when I woke up I could not function at all. Every single joint, muscle and hair on my body hurt so bad that once my son got off to school I had to climb back into the bed. (something I never, ever do) I have had severe fatigue all day and can't wait to get back in the bed tonight. I take Provigil for fatigue and it works great for me but it has done nothing at all to help me today. I feel like I have been hit by a freight train!!!:eek::eek::eek:

This is new to me, has never happened to me before and I just wanted to share that sometimes things can change and it happens very quickly only to leave us with another a ha moment.

I guess the moral to the story is I feel horrible and now moving forward I guess I can not even go outside while the sun is up or I will pay the price. Not fair to have anything dictate our life to us.............I am annoyed!!!

OK, I am done venting.

I hope your all doing well today.:wink2::wink2
::wink2:
 

·
The one and only
Joined
·
1,978 Posts
Awwww Karol... sorry you are feeling bad... yep the sun is the DEVIL...:lol: As much as I love, it definitely has negative affects with me too. I have started getting the blisters, so I just stay out of it... and I live in South Florida... so its kind of hard. Take care of your self sweetie... I hope you feel better soon... Aaaaaahhhh the price we pay to try to be "normal":(
 

·
Registered
Joined
·
7,800 Posts
Yep, I'm annoyed at the sun for the moment too. I mean, it's nice to see it, makes everything look nice and happy outside and after 7PM is lovely but from 10AM to 7PM it's a no no... poor dog thinks life has come to an end with no walks between the two :lol:

That said, I choose to stay in, knowing how ill it makes me feel if I go out. Thankfully I'm OK with ambient light and do enjoy the general "happy" brightness the nice days bring to everyone.

Katharine
 

·
Registered
Joined
·
1,640 Posts
Hi Friends,

I too, have been extra put out lately. I absolutely loved gardening. I only have a about one hour before sun down..that I can get out and get something done.

I have managed to do so..but, still become ill. I shake, and feel weak from exerting myself at all. I still have managed to plant some veggies and flowers.

Lately, I have been focused on indoor plants, as well. I have had loads of fun potting up new plants and taking cuttings to root, new plants. :)
If only I had more window space...:wink2:

I hope you feel better soon Karol.

Love,
Sandy
 

·
Registered
Joined
·
4,968 Posts
Discussion Starter #5
Thanks for your replies here and Sandy I love to garden also.

Today finds me with the little tiny maddening blisters starting.:mad::mad::mad:

Think I will just live in a cave.:lol::lol::lol:
 

·
Registered
Joined
·
467 Posts
hi karol

i get the same way as you're are describing. usually takes me about 2 to 3 days to balance back out. when i look back over the years when i was a sun bunny i noticed (around the time i started thinking something was wrong) after a day in the sun i always felt like crap when i came back in. it all makes sense now.

hope you feel better soon, take it easy till then

hugs and kisses
 

·
Registered
Joined
·
4 Posts
I have the same symptoms you described today! You described it so well!

I feel painful and have low grade fever.

I also feel so much pain in the chest area.

All this started on Monday...here is the short story :rolleyes:

I had to go out to shop, but the time I went out was after 3 P.M., but I was mostly in the car until I went out of the car to enter the shop.
Last Monday, I had to go to the lung specialist and it was the same thing, because the parking place was full so we had to walk all the distance to the building in the sun! When I got there I was so sick! :(:(

I live in a sunny country, Netherlands Antilles and going out during the day has become really awful to me, with chills and painful joints and muscles as soon I get back home.

I only can go out in the evening without any difficulty.

I'm done venting :)

I hope you're having a great day. :)
 

·
Registered
Joined
·
1,101 Posts
Howdy Karol,
Your suggestion about living in a cave is a good one. Seven years ago we bought our first house in the basement of which was a "room" that the first owners had used as storage. I saw the room and I fell in love with it: it has *no wondows*! It has become my "home within a home", my study, home theatre, retreat, computer room and a museum of my life and interests. It is not big but it is endlessly interesting.
We call it "Trogville".*
Oddly my much older brother pointed out that even as a child I avoided sunshine and generally looked white while others had tans. Oft times the body knows what the mind does not.
Douglas+

* as in "troglodyte", a caveman
 

·
Registered
Joined
·
4,968 Posts
Discussion Starter #10
Howdy to you Douglas,

Have I told you lately that you make me smile?
Have I told you lately how funny you really are?
Did I ever tell you that your posts, regardless to what they are are pure entertainment to read.:lol::lol::lol:

I hope your well and enjoying your little corner of the world you call endlessly interesting. For some reason I am sure it is.:rotfl::wink2:
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
Hi Karol,
LOL, Welcome to my world, it bites don't it? I have had to do this for the past 17 years. You are right it is not fair to make us vampires. I am a morning person so that makes it even harder to be a night person lol. I have had to go shopping at night and I wish doctors understood this and would see me at night too. Ok, now I am done with my venting. It is very painful if you spend too much time in the sun and not much helps but sleep and that is a maybe one. I am sorry that you now have this too.

I hope you feel better soon and don't have this happen again.
 

·
Registered
Joined
·
4,968 Posts
Discussion Starter #12
Thanks Tammy.

I dont think it would effect me to go out shopping during the day but only if I actually spend a few hours letting the sun hit my body with no break of shade.
Then again, who knows. I never thought the sun could make me feel the way it did so I guess things are changing for me. I am also a morning person so I will continue to shop and do my day time things but it may be under a umbrella moving forward.:lol::lol::lol:
 

·
Registered
Joined
·
1,563 Posts
Wow Karol

I am sending some ((((((hugs))))))your way to help you to feel better:).I do know what you are talking about.When i am out in the sun i get redder then a apple and end up with a huge migraine :mad:.I just love working outside doing whatever i can but have had to hide away since last summer:(.I unfortuantely have not been out in the sun this summer.So i do understand karol and wow that stinks to feel so much fatigue.I sure hope you are starting to feel much better to.I do understand how maddening it is young lady(((hugs))).Take care of yourself my friend;)
Tammy
 

·
Registered
Joined
·
4,968 Posts
Discussion Starter #14
Thanks Tammy.

I am feeling much better now. Seems the ill effects lasted only about 2 days and then I got back to feeling like myself again.:rolleyes::rolleyes::rolleyes:

Ahhhhhhhhh, life is good huh!:lol:
 
1 - 15 of 15 Posts
Top