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Posted By : cilly - 3/22/2017 1:59 AM
Hi All,

Just wondering if sunlight bothers us all or heat.

As when flare comes I cant stand in front of oven or stove on.

My face feels burning hot as on fire.

Its getting worse every year ,having too many flares this year and its not even summer yet.

I am scared to get in extreme heat or cold wind as instantly my skin flares and its extremely painful.

Almost like shingles.

Anyone else sounds familiar~
eyes confused confused eyes eyes

Posted By : Lynnwood - 3/22/2017 8:20 AM
We have many threads talking about sun sensitivity, light sensitivity, heat sensitivity, etc. Here are just a few of them. Check them out!

www.healingwell.com/community/default.aspx?f=29&m=3796955&g=3804896

www.healingwell.com/community/default.aspx?f=29&m=3806722&g=3815120

www.healingwell.com/community/default.aspx?f=29&m=3792740&g=3795398

www.healingwell.com/community/default.aspx?f=29&m=3790523&g=3792176
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 3/22/2017 10:50:00 AM (GMT-6)


Posted By : NanaBee - 4/19/2017 12:41 PM
I live in Phoenix, Arizona which is great during the fall and spring, but the summer's are awful. The heat is unbearable for me. Luckily we have a pool so we can cool down in the heat of the day. When we didn't have our pool I would take lukewarm showers during the day and right before bedtime. This helps a lot. I hope you can find a way to cope with the heat. I know it isn't fun trying to deal with it.

Posted By : ArtsyFartsy - 5/14/2017 4:22 AM
I am not diagnosed with lupus (yet anyway) but for the last 3-4 months my butterfly rash has been getting set off from the heat of my magnifying lamp. I am an artist and deal with incredibly small details and have no choice but to use it....omgosh, it's driving me nuts.

The rash has gotten so angry that even when it fades there is a 'ghost image' left that looks like broken blood vessels.

I had a period of this exact same thing 5 years ago and it went away after 2 months. This time it seems to be persisting and yes, I think sunlight has had a combined effect. In Michigan, so our sun is JUST starting to peek out.....really wondering what the summer will be bringing...

EDIT: I was diagnosed with discoid lupus in the early 90's via biopsy and blood tests and it must have gone into remission because I tested negative for ana 10 years ago. Maybe it's now coming back out? I also have chronic colitis (dx first in 2008, now again in 2016) and wonder if this is all connected.

Post Edited (ArtsyFartsy) : 5/14/2017 4:26:53 AM (GMT-6)


Posted By : Lynnwood - 5/14/2017 6:46 AM
ArtsyFartsy,

I wonder if you could get a small fan and blow it across you face while working? I know with some kinds of art materials that would not help. Or keep a glass of ice water near you and wipe your face with it fairy often. And/or try using sunscreen while you work - it may be the light as much as the heat.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : AmeliaD - 5/31/2017 7:31 PM
Hi everyone,
I don't get rashes but if I'm in direct sun and get too hot my face gets really red. To the point friends and family around have commented asking if I was okay. I usually am sick for the rest of the day. Not sure if these are similar reactions. I wish there was a text book with all symptoms and what they mean. I'm okay in the heat and sun if I can take breaks out of direct light or if I'm in a pool or ocean.

I hope we all find relief from our ailments. Take care all.
Amelia

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