"Here Comes the Sun"...Oh No!

[Cort]

[fright]

[/fright]Just had an interesting experience. As some people know I'm camping out full time. I just got this big van. Usually I work outside but there I was in the middle of the day and I went inside of the van to do some work....After about 20 minutes I was much calmer and my energy was much better.

I've noticed this before - getting out of the sunlight - even if its not full sunlight can really help. There's something about sunlight.

I grew up in beach town - Redondo Beach - in Southern California. Loved going down to the beach and soaking in the sun.

Ever since I got ME/CFS/FM - I can't even imagine doing that. The combination of heat and light just seems like agony.

There's something about sunlight. I have no idea what's causing it.

Anyone else notice problems with the sun? Anyone know what's causing it?

 

[madie]

I'm heat sensitive and bright-intolerant, but I'm very very happy outside looking away from the sun on a warm day. I get unhappy super-fast if I do anything energetic. But I can last for hours if the temperature is right, gardening while sitting in the dirt. I hear those microbes are also good for our guts!

 

[Seven]

Anyone else notice problems with the sun? Anyone know what's causing it?

When I told my Doctor about it she says the sun exacerbates Herpes's viruses(not sure if this is true I didn't research) but that was her answer to me. My virus is hh6V (the one I can't suppress). I have POTs also so not sure if my intolerance comes from POTs or CFS or gene, because I also have the gene half mutated (VDR I think, cant remember the vit D gene from 23 and ME).

 

[bobby]

For as long as I can remember I've been sensitive to the sun, and heat. And bright lights tbh. It only got worse with ME, a lot worse. But there's a difference to the heat intolerance now. As if my body's temperature regulator doesn't react quickly enough. I'm blaming my ANS.

 

[Tony L]

Although oversensitive to intense sunlight earlier in life, less so now (except first thing in morning!). But heat has been a problem for years now. Over 25 degrees and I'm in trouble. Which is not a problem that often living in Wales, but does impact on our family holidays.

 

[Remy]

Sun is the original (and maybe the most important) medicine.

https://selfhacked.com/2015/10/25/d...he-sun-circadian-rhythms-and-light-therapies/

 

[Lissa]

Yeah - I think of getting some sun and heat intolerance as two different things. For instance, I can really enjoy sitting in the sun for a certain amount of time before wilting. But that is only if it is NOT hot outside. Sun feels REALLY good, until suddenly it doesn't! Fine line there...

It's like a Goldilocks situation really! Over a certain temperature -- which tends to be about 74 (F) for me-- I start to feel awful. (Sun, or no sun --- even indoors, if it gets too warm.) Like the ANS can't regulate at all so I am screwed. I need to get into AC ASAP before I crash. Then once I've cooled down I feel better again. Humidity makes things even worse... gack!

 

[Rosie26]

I love getting out in the sun. We don't get extreme high temperatures where I am. I feel a level or two better in the summer. Although I am heat intolerant, I still am better off in summer than the winter.

Taking a dip in the sea has to be a good thing too @Cort. I had plans to do that this summer but didn't manage to get there. I may still try and go, even just to let the water lap over my feet.

 

[Tony L]

Sun is the original (and maybe the most important) medicine.

Very useful article Remy. Thanks.
This time last year I was much more active and never spent a whole day indoors. That has changed but I must try to get regular sun, as the weather allows.
I had thought of trying a morning float in the sea this year, once it has warmed up, so maybe i can get my sun then. Our weather seems to have become so much more changeable in recent years, with summers often cool/wet so it will be a challenge to keep a routine.

 

[San Diego]

Yeah - I think of getting some sun and heat intolerance as two different things. For instance, I can really enjoy sitting in the sun for a certain amount of time before wilting. But that is only if it is NOT hot outside. Sun feels REALLY good, until suddenly it doesn't! Fine line there...

It's like a Goldilocks situation really! Over a certain temperature -- which tends to be about 74 (F) for me-- I start to feel awful. (Sun, or no sun --- even indoors, if it gets too warm.) Like the ANS can't regulate at all so I am screwed. I need to get into AC ASAP before I crash. Then once I've cooled down I feel better again. Humidity makes things even worse... gack!

Exactly. I do NOT tolerate heat - at all. Nor do I tolerate bright lights. My house is like a cave - dark and cold lol.

Sad, as I grew up outdoors year round and loved the sun.

Another thing I’ve noticed is that I don’t feel cold until I am chilled to the core. My legs and arms can feel like ice to the touch, but I’m unaware that they are cold. Weird.

 

[tatt]

being in the sun means you are producing vitamin D, I need that. Being in the sea means you absorb magnesium through your skin, most people with ME are deficient in that.

I ticked just fine as I feel better in the sun but I am heat intolerant so have to be careful where I go to get my sun, if it's too hot I have to spend a lot of time in the sea. I'm also very light sensitive when trying to sleep - have blackout curtains and binds at the windows in my bedroom and a sleep mask for travel.

 

[AliceE]

[fright]View attachment 1455 [/fright]Just had an interesting experience. As some people know I'm camping out full time. I just got this big van. Usually I work outside but there I was in the middle of the day and I went inside of the van to do some work....After about 20 minutes I was much calmer and my energy was much better.

I've noticed this before - getting out of the sunlight - even if its not full sunlight can really help. There's something about sunlight.

I grew up in beach town - Redondo Beach - in Southern California. Loved going down to the beach and soaking in the sun.

Ever since I got ME/CFS/FM - I can't even imagine doing that. The combination of heat and light just seems like agony.

There's something about sunlight. I have no idea what's causing it.

Anyone else notice problems with the sun? Anyone know what's causing it?

This is EXACTLY what happens to me and was in fact one of my very first symptoms. I noticed that if I was directly in the sun even for very short periods - waiting for somebody to get out of a car, or even for a red light to change so I could cross a road I would start to feel horrible. Drained, angry, completely wasted. For a few years before becoming properly ill I got used to making sure I was always standing in the shade. I put this down to moving to Los Angeles from the UK and not being used to the sun. But it's much more than that. When I first moved here I used to go for hikes on Runyon Canyon! Now I go outside, wait until the veins on my hands start to pop up (around 5-8 minutes, less on a bad day) and then I have to come in. And yes - exactly the same with heat inside. The evenings are a constant battle with my other half - I go ballistic at 72 degrees while he freezes at 70, which is just about right for me.

 

[Not dead yet!]

I have migraines with aura, the only time I really can't handle the sun is when I have one coming on. I think it's the encephalitis that gets worse from an oncoming migraine. The sun has positive associations for me, so maybe I just don't notice the power drain. Even as a child though, if I played in the sun, like a volleyball game or something, I'd be glad when I took shelter in a nearby pizza place. Squinting can make me tired so I am careful to wear sunglasses.

Possibly the most painful sun-effect for me is the strobe light effect when I'm driving and there are trees making shadows on the road. I've had to pull over and take a break even after a few minutes of that. Those pharmacy sunglasses that are almost like goggles are the best.

I will pay more attention this summer because I just can't stay away from the beach. When I worked for the USDA I learned that the sun can drain you a lot if you're out in it too long. A sunhat and sunglasses were required (the combination of both of those is about 10 times more effective). I think people with MS wear special vests to do gardening, with icepacks in them.

I also learned from the USDA folks (who were running experiments so they'd go around gathering samples in various fields daily) that V8 juice is much better than Gatorade. I had bad sunstroke when I was still learning how to deal with the heat and sun... and in an hour the V8 juice fixed me up. That was before the ME/CFS though.

I assume the sun sensitivity is related to the encephalitis, but again I wish there was more research into it.