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Sunlight Sensitivity

Adlyfrost

Senior Member
Messages
251
Location
NJ
SUN gave me:
-fevers
-racing heart
-PEM
-pain
-clogged ears & more.
-Summer SAD
I thought I got radiation sickness every time I went in it!

This is when I lived in FL. I had to be a hermit then- for over 10 years. The fevers were awful. Would sleep for days. Like being poisoned exactly! Had to block windows, tint car.

Thought when I left FL would be cured - I had no idea the winters up here can be worse! Sun not as bad in NJ. Angle/latitude and atmospheric condions have big impact. Still get summer SAD but not as long. Up here get winter SAD worse.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I'm so lucky I live in Fog City. Around here it's fogged in all summer. Confuses the tourists, makes for gorgeous photos of the Golden Gate Bridge.

I never go out in the sun if I can help it, anyway. Sunglasses are de rigueur. When my daughter goes to France (the BF is French) she stocks up on sunscreens that you can't get in the States.
 

Adlyfrost

Senior Member
Messages
251
Location
NJ
@Tired of being sick : Yes Kryptonite! That is how I explain it to my friends!


One controversial thing: VITAMIN D! Can't figure that one out. Is it bad or good? Unfortunately the best vitamin D is during peak sun levels. However I am not sure the VIT D had anything to do with me getting sick from the sun. Never noticed feeling ill after taking D supplements. Any thoughts ya'll?
 
Last edited:

Hip

Senior Member
Messages
17,824
Folks, note, there is a difference between sunlight (which has UV etc) having gross effects on the body, vs bright light causing pain etc due to problems with the nervous system though the eyes, so be specific when talking about such symptoms, please?

I second what SilverbladeTE has said: people on this thread need to make clear whether they are talking about:

(1) light or sunlight affecting their eyes, due to ocular sensitivity; or
(2) sunbathing (sunlight falling on their skin) affecting them.
 
Messages
97
I have a problem with bright light that seems to build over time, but heat is the real killer for me. And I live in Tucson, AZ. Currently, without air conditioning.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I was going to chime in here as well. I don't like bright lights... but bright lights only bring mild discomfort. Direct Sunlight however? That causes much more severe reactions to me.

About one year ago, I broke out in hives after a day in the sun, relaxing - switching between floating on a raft on the cool pool and soaking in the hot tub and drinking some alcohol. I didn't know why I'd broken out in hives, but have experienced enough 'new' allergies lately to assume that it might be tied to my sunscreen or chemicals in the pool. I knew I was overdoing it that day - ended up bedridden for about four days afterwards... but it was a nice treat.

BUT, all fall last year - if I spent more than ten minutes in direct sunlight, the hives would return. Sure enough, I spent a couple of hours trying to help with a school event today. I've got hives, headache, dizziness and nauseau. Part of it might be over doing it... but I was basically sitting in a chair and standing up periodically to direct the bike riders (they were transitioning off of a bike path through a parking lot and then someone else was guiding them back onto the path (going around construction site). But, I was in the sun and couldn't find a place to sit in the shade. And I'm miserable.

This has happened often enough for me to track that it's primarily sun exposure causing my symptoms because I can do the same type of thing and have far less impact on my health.

I was joking around, with someone at one time that ... go figure, it might be related to my VDR Taq genes... my body trying to tell me that there's no sense sitting out in the sun if I can't convert it to Vit D anyway... and lo and behold, it does seem like my reaction worsens when I'm low on Vit D (and haven't been taking my drops) and a little better when I'm at a better level. Totally non-scientific experience, obviously... but I have noticed that I seem to tolerate it a little better or for a few more minutes when my D vitamin levels aren't so terrible.

I was thinking about problems converting Vitamin D too. I get similar symptoms to you after sun exposure, especially nausea and mild headache, and general PEM-like aching and weakness. I have sometimes had a similar reaction after using my UVB lamp (for Vitamin D) in the winter. I don't always get it though, and I don't think the sun gives me hives/urticaria.

I have SNPs (mutations) of what I think are the three main Vitamin D receptors (VDRs): Bsm1, Taq1 and Fok1.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I was thinking about problems converting Vitamin D too. I get similar symptoms to you after sun exposure, especially nausea and mild headache, and general PEM-like aching and weakness. I have sometimes had a similar reaction after using my UVB lamp (for Vitamin D) in the winter. I don't always get it though, and I don't think the sun gives me hives/urticaria.

I have SNPs (mutations) of what I think are the three main Vitamin D receptors (VDRs): Bsm1, Taq1 and Fok1.
You would know if you got hives. You break out in big red and white spots, and you itch like crazy.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
You would know if you got hives. You break out in big red and white spots, and you itch like crazy.

I don't get that. Just occasionally a few weals and temporary itchy rashes but this seems to be due to contact with certain plants, not sunlight.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
I don't get that. Just occasionally a few weals and temporary itchy rashes but this seems to be due to contact with certain plants, not sunlight.
It could be the combination of certain substances--some plants are full of irritants--plus sunlight. You may have photodermatitis, not hives:
http://umm.edu/health/medical/altmed/condition/photodermatitis
http://en.m.wikipedia.org/wiki/Photodermatitis

This site has a good picture of hives:
http://www.aad.org/dermatology-a-to-z/diseases-and-treatments/e---h/hives

I haven't had them very often, and they've gone away quickly. They were the itchiest thing I've experienced. I don't know where the "may itch" comes from.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
It could be the combination of certain substances--some plants are full of irritants--plus sunlight. You may have photodermatitis, not hives:
http://umm.edu/health/medical/altmed/condition/photodermatitis
http://en.m.wikipedia.org/wiki/Photodermatitis

This site has a good picture of hives:
http://www.aad.org/dermatology-a-to-z/diseases-and-treatments/e---h/hives

I haven't had them very often, and they've gone away quickly. They were the itchiest thing I've experienced. I don't know where the "may itch" comes from.

Thanks. I don't think I've had that, except perhaps occasionally, very briefly and very mildly. Not really bothersome at all.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
SUN gave me:
-fevers
-racing heart
-PEM
-pain
-clogged ears & more.
-Summer SAD
I thought I got radiation sickness every time I went in it!

This is when I lived in FL. I had to be a hermit then- for over 10 years. The fevers were awful. Would sleep for days. Like being poisoned exactly! Had to block windows, tint car.

Thought when I left FL would be cured - I had no idea the winters up here can be worse! Sun not as bad in NJ. Angle/latitude and atmospheric condions have big impact. Still get summer SAD but not as long. Up here get winter SAD worse.

I'm interested in the 'clogged ears' thing. This is something that has plagued me on and off for years, and this morning I woke up almost totally deaf. Managed to clear one ear with sodium bicarbonate drops so at least I am only half-deaf now!

I hadn't thought about a possible connection with sunlight. Did/do you only get it in summer? Did/do you get intense itching in an ear before it becomes blocked?

I've been blaming myself for picking and poking at my ears when they itch, but I don't think I had touched the left one, yet that became blocked.
 

Adlyfrost

Senior Member
Messages
251
Location
NJ
I'm interested in the 'clogged ears' thing. This is something that has plagued me on and off for years, and this morning I woke up almost totally deaf. Managed to clear one ear with sodium bicarbonate drops so at least I am only half-deaf now!

I hadn't thought about a possible connection with sunlight. Did/do you only get it in summer? Did/do you get intense itching in an ear before it becomes blocked?

I've been blaming myself for picking and poking at my ears when they itch, but I don't think I had touched the left one, yet that became blocked.

Yes I only got this in hot or summer weather.... until I moved up north- then I got it when my viral symptoms flared in extreme cold too. I also got this my first Fall up north when I had seasonal allergies.

Now that I have been up North for a couple of years I only get it mainly in the summer because I am better at treating viral stuff and immune system in other seasons. Drier weather seems to help this condition.

I never got much itching though. But when I lived in FL it was very strange- within minutes of intense or summer sunlight my ears would clog. I think it is the result of an immune response being activated. My viruses keep my immune system hopping to the point of exhaustion 24/7 so I am aways getting inflammatory responses all over body like a lot of PWME.

I don't think picking at your ears will do this. My worst flare was one summer when I didn't have A/C. I got a terrible wax build up- had to use syringe with warm water and after 10 days of drops, like a quarter cup of wax came out in the shower after syringe treatment. Since then it has only been fluid that comes and goes and mild aches.
 

Adlyfrost

Senior Member
Messages
251
Location
NJ
Perhaps we should all move to the NW coast, where it's cool all year. But then we'd have mushrooms growing out of our carpets.

For years I thought if only I could get out of FL I would be cured, but after moving to NJ I found CFS/ME stays with me where ever I go (in fact got worse in the freezing temps). I do find that lots of clouds, moderate temps and moderate amounts of humidity are best. I am thinking perhaps NC mountains.

I agree the cool humidity of the NW might not be best- it nearly drove the Lewis and Clark expedition to insanity their one rainy winter in Oregon.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
For years I thought if only I could get out of FL I would be cured, but after moving to NJ I found CFS/ME stays with me where ever I go (in fact got worse in the freezing temps). I do find that lots of clouds, moderate temps and moderate amounts of humidity are best. I am thinking perhaps NC mountains.

I agree the cool humidity of the NW might not be best- it nearly drove the Lewis and Clark expedition to insanity their one rainy winter in Oregon.

and some of us may want to stay in our own countries! :D
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Many of the plants that do well here (San Francisco) are from tropical highlands--not too hot, not too cold, lots of clouds and fog. Perhaps there's a mountaintop in New Guinea . . . .
 

meadowlark

Senior Member
Messages
241
Location
Toronto, Canada
When I was just sixteen, I reacted so badly to bright light (dizziness, visual confusion) that I couldn't learn to drive (the glare through the windshield was too much) and I took to wearing sunglasses whenever possible. I was an actress for years, but the bright lights began to disorient me--especially if I was standing on a raked stage!--and this was one of the reasons I quit the profession. Now, in my sixties, I have to wear sunglasses indoors if I'm near a window on a sunny day, and always wear them outdoors if the sun is out. If I don't wear them, I become too dizzy to walk, or have a grand mal. The grand mal is not a very good outcome.

I find extremely hot weather very debilitating, but only in the way that most people do.