Sun exposure advice

Posted by januaryjane @januaryjane, May 24 12:37am

Hi, I have a lot of difficulty being in th sun. Im not diagnosed yet but my symptoms align with Erythromelalgia. Whatever it is, I have a lot of trouble in a car. My skin gets red and hot and Ill feel awful. Anyone have advice for protection?? Im looking at window shields, but also need ideas while driving. Sometimes jackets are too hot. Protecting my face/neck has been the most difficult. Thanks!

Hello @januaryjane, I'm more sensitive to the sun when I'm driving in my car also. Here is a Mayo Clinic Newsfeed article on Sunscreen Season that you find helpful: https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/sunscreen-season/ — In the comments, @merpreb mentioned a new sunscreen from Europe that can now be purchased in the US. It's called, Tinosorb. She may be able to offer some suggestions.

You may also be interested in another discussion on Connect – Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/

Here are some links that may be helpful:

Sun Exposure While Driving: https://skincancer.net/clinical/sun-exposure-driving/
Your car’s side windows aren’t protecting you from UV rays, study warns: https://globalnews.ca/news/2706445/your-cars-side-windows-arent-protecting-you-from-uv-rays-study-warns/
Can You Get Sunburned Through a Car Window ?: https://uvaction.com/blogs/sun-protective-clothing/can-you-get-sunburned-through-a-car-window

REPLY

@januaryjane– It's nice to meet you. Were you born in January? 🙂 Erythromelalgia is a very rare disease. I've never heard the name but I have heard some people complain about some of the symptoms. I found this on the Nationa Organization for Rare Disease's website so you can learn about it.
Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature.
https://rarediseases.org/rare-diseases/erythromelalgia/
What symptoms do you have that might lead you to think that you might have Erythromelalgia? I'm not sure that you are talking about feeling ill or burning. If you feel ill in the sun, and it's not about burning then I would recommend looking through all of your medications to see if they make you sun sensitive. I was on the beach a while ago with a friend. She had been warned against lying in the sun because she was on an antibiotic that made her sun-sensitive, not only to burning but also to feeling ill. She wound up having to leave the beach and go to her doctor. I would also recommend turning the AC up high to cool the car. I would also make sure that you are well hydrated.

If burning is your problem than I use EltaMD and Tinosorb. I get the tinted ones (I'm an older gal who loves to have even-toned skin. Both work beautifully. But you must re-apply it throughout the day. Sunblocks do not last all day no matter if they are waterproof! There are also lightweight sun-protecting clothing that works. Surfers use them. Just google sun protecting clothing and google will show you a whole bunch of stores that carry them. And it's Memorial Day weekend so there are fabulous sales!

Have you spoken with your doctor?

REPLY
@johnbishop

Hello @januaryjane, I'm more sensitive to the sun when I'm driving in my car also. Here is a Mayo Clinic Newsfeed article on Sunscreen Season that you find helpful: https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/sunscreen-season/ — In the comments, @merpreb mentioned a new sunscreen from Europe that can now be purchased in the US. It's called, Tinosorb. She may be able to offer some suggestions.

You may also be interested in another discussion on Connect – Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/

Here are some links that may be helpful:

Sun Exposure While Driving: https://skincancer.net/clinical/sun-exposure-driving/
Your car’s side windows aren’t protecting you from UV rays, study warns: https://globalnews.ca/news/2706445/your-cars-side-windows-arent-protecting-you-from-uv-rays-study-warns/
Can You Get Sunburned Through a Car Window ?: https://uvaction.com/blogs/sun-protective-clothing/can-you-get-sunburned-through-a-car-window

Jump to this post

Thanks, I will look at all this. Unfortunately sunscreen does not help. I need actual blockage from my skin. Thank u for your reply!

REPLY
@merpreb

@januaryjane– It's nice to meet you. Were you born in January? 🙂 Erythromelalgia is a very rare disease. I've never heard the name but I have heard some people complain about some of the symptoms. I found this on the Nationa Organization for Rare Disease's website so you can learn about it.
Erythromelalgia is a rare condition that primarily affects the feet and, less commonly, the hands (extremities). It is characterized by intense, burning pain of affected extremities, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature.
https://rarediseases.org/rare-diseases/erythromelalgia/
What symptoms do you have that might lead you to think that you might have Erythromelalgia? I'm not sure that you are talking about feeling ill or burning. If you feel ill in the sun, and it's not about burning then I would recommend looking through all of your medications to see if they make you sun sensitive. I was on the beach a while ago with a friend. She had been warned against lying in the sun because she was on an antibiotic that made her sun-sensitive, not only to burning but also to feeling ill. She wound up having to leave the beach and go to her doctor. I would also recommend turning the AC up high to cool the car. I would also make sure that you are well hydrated.

If burning is your problem than I use EltaMD and Tinosorb. I get the tinted ones (I'm an older gal who loves to have even-toned skin. Both work beautifully. But you must re-apply it throughout the day. Sunblocks do not last all day no matter if they are waterproof! There are also lightweight sun-protecting clothing that works. Surfers use them. Just google sun protecting clothing and google will show you a whole bunch of stores that carry them. And it's Memorial Day weekend so there are fabulous sales!

Have you spoken with your doctor?

Jump to this post

Yes, its been fun looking at all the sales! For awhile I had unexplained hand burning and redness, also my ears, just minor. About 2 years ago my face started to have these flares. I was worked up for lupus and other autoimmune disorders, nothing panned out. It just got worse, affecting my ears, face, hands and feet. I was doing research and found Erythromelalgia. Everything was spot on. I havent been diagnosed, I havent even talked with a Dr. about it yet. I was just finding out and none of these specialists brought it up. So anyway, it may or may not be it. But it is definately something. These parts of my body swell, burn, turn red, are hot, if they have too much sun or environment gets too warm. Also, caffeine, tiredness, or stress can activate them. Meds are not different. Sunscreen is not helpful for this. It eventually calms down with rest, elevation and cooling. Believe me, i used to use tanning beds, or just outside, this is abnormal. I am seeing a new Rheumatologist next month, so hoping to talk to him about this. Not sure if he specializes in this, but I know of another Dr. that supposedly does, hes a dermatologist. So I hope to get to someone whois helpful!

REPLY
@januaryjane

Yes, its been fun looking at all the sales! For awhile I had unexplained hand burning and redness, also my ears, just minor. About 2 years ago my face started to have these flares. I was worked up for lupus and other autoimmune disorders, nothing panned out. It just got worse, affecting my ears, face, hands and feet. I was doing research and found Erythromelalgia. Everything was spot on. I havent been diagnosed, I havent even talked with a Dr. about it yet. I was just finding out and none of these specialists brought it up. So anyway, it may or may not be it. But it is definately something. These parts of my body swell, burn, turn red, are hot, if they have too much sun or environment gets too warm. Also, caffeine, tiredness, or stress can activate them. Meds are not different. Sunscreen is not helpful for this. It eventually calms down with rest, elevation and cooling. Believe me, i used to use tanning beds, or just outside, this is abnormal. I am seeing a new Rheumatologist next month, so hoping to talk to him about this. Not sure if he specializes in this, but I know of another Dr. that supposedly does, hes a dermatologist. So I hope to get to someone whois helpful!

Jump to this post

@januaryjane– It does sound like Erythromelalgia, the more you describe your symptoms. This must be so uncomfortable and frustrating for you. I'm glad that you will be seeing a Rheumatologist soon. At first I thought it might be lupus too. I have been in remission for years with discoid lupus (mostly a skin disorder). Can you have someone do your errands so that you can stay out of the sun? This might be the only recourse you have right now!

REPLY
@januaryjane

Thanks, I will look at all this. Unfortunately sunscreen does not help. I need actual blockage from my skin. Thank u for your reply!

Jump to this post

@januaryjane– There are a lot of good sunblocks out there, not sunscreens. But if those don't work then I suggest clothing with sunscreen if you must go outside.

REPLY

You can apply for tinting for your windshield, but note that it will make a difference when driving at night. I have sleeves for the sun as well as fingerless gloves to use while driving, It stops the burning feeling. I wear large sunglasses. For days outside, I sunscreen and cover up. I like long sleeved t-shirts and pants. I wear a broad-brimmed hat with sunglasses. Also, have to be sure your electrolytes are good; if you start feeling weak, that is the culprit. Also hydrate as you go. I carry electroytes in pill form as well as half and half water/propel or gatorade.

REPLY

We had window film with barely any tint ( 3M and several other brands ) installed in our car windows that block 99% of UV rays

REPLY
Please login or register to post a reply.