I’ve been avoiding sun and heat. Some days I think I’d rather deal with the pain and just go outside. My condition seems somewhat mild compared to what I’ve seen. (I do have many other medical conditions though) I am worried that the sun/heat will make my condition permanently worse though. Has anyone found this to be the case?
I am not an expert. I don't think the heat and sun do any kind of permanent damage. But I think it is more than you may be more uncomfortable for a while when you are out and after you return home. Let's see what others say. I still am working full time so I have to travel to and from work. It is not the actual heat as much as it is the exertion which causes my EM to flare.
Hope you get some more replies.
It depends on what time and the conditons that day. I wouldn't go for a walk in the sun from 10 am to 4 pm in the height of an Australian summer. But early mornings and late afternoons are often fine with me as long as I'm wearing a hat etc. It depends on the day. I have accidently gotten burnt twice in winter in the past few years -- on my arms and shoulders. One time it happened because I was sitting by the water with a hat on etc but was wearing a light, white cotton Indian top with a tank top underneath and dark trousers. The sun burned through the clothing where the tank top didn't cover my skin under the light indian cotton top. Although I got sunburned -- not badly - but enough to feel too hot on my arms and have a 'pink glow' (ugh!)etc I did not seem to suffer a permanent problem from it.
My avoidance of the sun in the middle of the day (it's just an instinctive avoidance, it's all too bright and strong and hot) has meant I have low vit d levels.
The vitamin D is key I had staggeringly low vitamin D because of sun avoidance
Vitamin D is essential for iron and zinc absorbtion in the intestine - I have found that my condition is even more irradic when my vitamins aren’t perfect
As for the sun I do a rotation method and avoid the mid hours of the day
I wear sandals and such to decrease warmth on my feet and I plan my walks to include some down time as to not overheat myself
But I have gotten burned also and it was unpleasant but not permanently damaging
I just came back from my first trip to the beach since developing EM last December. I was worried about the heat triggering flares, but I can honestly say that, aside from warm pink fingers during the car ride home this afternoon, I had zero symptoms. I had been having strong flares most nights after work last week. I’m wracking my brain trying to figure out what the difference could be and how I can recreate it other than quitting my job and moving to the beach …
Did you have a swim? I find if I have a good 20 swim, staying in the water 20minutes or more, can stop me from heating up again for up to 3 hours or more. I lived with in short walking distance of the beach until 4 years ago and I used to swim regularly which made me both fit and temporarily cool. My aim is to move back close to the beach - this won't be at least for another year.
I just came back from my first trip to the beach since developing EM last December. I was worried about the heat triggering flares, but I can honestly say that, aside from warm pink fingers during the car ride home this afternoon, I had zero symptoms. I had been having strong flares most nights after work last week. I'm wracking my brain trying to figure out what the difference could be and how I can recreate it other than quitting my job and moving to the beach ...
Oh, yes, blue. I was able to spend some time in the water, which was pleasantly cool (refreshing for me and hopefully a food sign for a slow Gulf hurricane season). I just wish we could have stayed a little longer than 24 hours…
I’m not sure about perm damage, but I tend to avoid the sun at any hour if the day.
I am probably more sensitive than some, since I’ve noticed that I can be in the car, with the sunlight only on a portion of my chest or feet. Not five minutes later I will have welts and red flaring skin precisely where the sun was. Then an EM flare will follow, pain lasting for hours.
But I never put it together that some get an intense flare hours later. Thanks for that tip since I would be baffled as to why a flare would suddenly pop up hours after the short car ride. Now I know why!
I often joke that I am on the fast track to becoming a vampire, since I avoid the sun and am always in cold dark rooms, Hee Hee!
Keep cool guys!
I can't say for sure but just based on talking with others here over a period of time I don't think it actually causes EM to progress. There are many people that have EM say... in their feet only and have it there for years and they still work and go outside. They still have it only in their feet. That being said. It definitely makes it worse now! AS dkel9307 said the longer you are exposed to the heat the more severe the symptoms and the longer they will last. That is not saying all of your symptoms from here on out will be worse and last longer just that this one will. It is something you learn from experience what your EM does. You will learn for the most part just how much you can do that will cause just how much pain you can brush off. you will learn what causes you so much pain you can not brush off and learn to stop shy of that.
Now sometimes even our own EM can surprise us! We may suddenly one day be able to do just a little bit more Then there is the dreaded day where you KNOW you can spend 10 minutes in the store but you can't and end up having to leave your groceries in the cart and come home crying.
Most days you can predict what you can and can't do. you may not like it but you will know.
Thank You everyone. I appreciate the advice. I also have Lyme, a Mycoplasma infection and Optic Neuritis unfortunately. I’m hoping if we can get the Infections under control the other symptoms will lessen. I guess for now I’ll keep avoiding the sun. Summer is going to hurt, I live in south Florida.
Last year, I went to Disney World got a very mild sunburn (just a bit pink, no red/peeling) on my face/shoulders. I only had EM in my toes and fingers. A week later, my shoulders were normal and my face was still pink. Uh-oh. Well, in about a month, the sunburn did fade from my face, but within the few months following that, my face started getting pink again and having EM flares exactly where it had been burned. The EM area of my face (which is pinkish all the time now) matches exactly where I had that sunburn - it even stops abruptly exactly where my sunglasses sit.
I have also noticed that injuries to my feet have worsened the EM (where the injury happened). I dropped something at the base of a big toe several months back and the EM has been worse there ever since. It's also worsened across the front of my feet where some flip-flops rubbed my skin too much last year.
Sometimes I just go out and try to have fun in spite of EM too. Have fun, but be cautious! I always carry alternate footwear in case my sandals rub too much in any one spot. And I carry an umbrella on the sunniest days.
Wow! Good to know. I have never heard this of happening before. Then again I have never seen anyone ask before either!
I myself can't tolerate any temps above 63-65 and sun is a huge no no so I guess I don't have to worry about doing that to myself. Who knows though if I have done it to myself in the past and that is how I ended up this bad????? It has been about 4 years and I can't remember . I know I never had a severe burn but possibly before it was real bad I did get some prolonged sun on my face and arms where I have EM today????? Something to think about.
I have come late to this discussion after days of hospital visits. If I am caught outside by the sun I feel the burn immediately but it goes when I get out of the sun which I do as fast as I can. What doesn’t go though is a fine pimply and very itchy rash which comes up within hours and will last up to three days.
Getting sunburnt aside In my experience I don’t think there is any long term worsening of flares as a result of having to spend time in the sun.