1. < Autoimmune Diseases

Getting sick after sun exposure

Posted by windyshores @windyshores, Jun 16 6:41am

I am wondering if others get sick when exposed to sunlight. I wear long sleeves and gloves while driving, but still feel unwell the following day: diarrhea, headache, sore throat, soreness all over, fluish. Sunlight also give burning sensations with direct exposure, but the main issue is illness hours later.

I have a systemic lupus diagnosis, strongly positive ANA, as well as very high, >8, anti-centromere antibodies (scleroderma). Most other tests are negative.

Just wondering if this very specific autoimmune issue is common- or maybe due to something else. This has been going on for 20+ years.

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rashida | @rashida | Jun 19 10:55am
In reply to @windyshores "A parasol would be great. I have ordered two and returned them because they are too..." + (show)
@windyshores

A parasol would be great. I have ordered two and returned them because they are too heavy (I have a bunch of spinal fractures). Anyone have a good one that is light?

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@windyshores - Just around Canada Day (and possibly Independence Day on July 4 in the US ….?) novelty and souvenir stores sell these “umbrella” hats that look ridiculous, but provide hands free umbrella shade. Would something like that work for you?

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Christine | @thisoldewe | Jun 19 4:22pm

@rashida
I think you are right! The name was close to Emla... my son needed that too! (Still does!)
I would have to check again on the ingredients, but I could use it without difficulty 2 years ago.
Thanks!

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1 reply
rashida | @rashida | Jun 19 9:08pm
In reply to @thisoldewe "@rashida I think you are right! The name was close to Emla... my son needed that..." + (show)
@thisoldewe

@rashida
I think you are right! The name was close to Emla... my son needed that too! (Still does!)
I would have to check again on the ingredients, but I could use it without difficulty 2 years ago.
Thanks!

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@thisoldewe here is the info from Emla Canada:
https://www.emla.ca/wp-content/uploads/2020/03/EMLA-Patient-Info-EN.pdf
And this:
https://www.drugs.com/emla.html

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1 reply
kcalby | @kcalby | Jun 20 1:17pm
In reply to @windyshores "I don't know what PEM stands for. I have (systemic) symptoms (see my first post) from..." + (show)
@windyshores

I don't know what PEM stands for.

I have (systemic) symptoms (see my first post) from the sun in June and July, regardless of whether it is hot or cool out. In September it can be very hot but the sun is not as direct and I don't have the same symptoms as I do when the sun is close.

I believe there are immune cells in the skin that may react to the sun.

I have different, quite subtle, reactions to heat. Mainly just hot flashes and tingly sensations, but don't get systemically ill.

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Oops sorry; PEM stands for post exertional malaise
It’s a term used a lot with myalgic encephalomyelitis (chronic fatigue syndrome)

The symtoms I was referring to was the flu like symptoms u mentioned of headache, sore throat, etc

I definitely experience all you’ve mentioned so far and am so sorry u deal with it to. I also apologize for my first comment and I didn’t use language that was well received - my brain fog is dementia thick and can make communicating challenging.

I just experience the things you mentioned and I anted to share what I’ve learned through all my research. I wish you relief from it all!

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1 reply
windyshores | @windyshores | Jun 20 1:54pm
In reply to @kcalby "Oops sorry; PEM stands for post exertional malaise It’s a term used a lot with myalgic..." + (show)
@kcalby

Oops sorry; PEM stands for post exertional malaise
It’s a term used a lot with myalgic encephalomyelitis (chronic fatigue syndrome)

The symtoms I was referring to was the flu like symptoms u mentioned of headache, sore throat, etc

I definitely experience all you’ve mentioned so far and am so sorry u deal with it to. I also apologize for my first comment and I didn’t use language that was well received - my brain fog is dementia thick and can make communicating challenging.

I just experience the things you mentioned and I anted to share what I’ve learned through all my research. I wish you relief from it all!

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@kcalby not sure why you are apologizing! My daughter and I have spent years differentiating effects of sun vs heat. The sun effects are through the skin, the heat effects are more body-wide. Hope you feel better too!

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terriann | @twinkie23 | Jun 20 2:06pm

There’s a sunscreen by Alba Botanicals, could that be it?

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