Getting sick after sun exposure

Sun sensitivity is a well known symptom of lupus. It can cause a malar or photosensitivity rash plus burning and itching of skin as well as a flare in systemic symptoms like fever, flu-like aching, joint pain, increased fatigue etc hours after the sun exposure. Some of us are extremely sensitive and others not as much. It’s important to know what amount you can tolerate and take all the precautions you need to avoid these reactions. If you accidentally get too much sun, aspirin or NSAIDS can help and some reactions may even require prednisone, antihistamines if hives or itching occurs. The suggestions thus far are good! I also always carry a large umbrella with me for when shade is not available. Living in sun drenched AZ desert certainly is a challenge for me!

@gingerw thanks! I had a prescription and letter from my old rheumatologist, who has retired. It was difficult with the Dept. of Motor Vehicles- a lot of bureaucracy. Maybe I will try again.

I have bruises all over my lower arms. Ecchymoses? They say it is senile purpura. Not sure. Interesting that you have them. My red blood cells are large and other blood tests are off for anemia. Kidney function took a dive but apparently not autoimmune. So yes mine is mild too, in the shade!

Hoping you find solutions, especially with regards to a sunscreen that works well for you. I share your sun sensitivity and lupus. This umbrella and the detachable long sleeves have helped me in the past in certain situations.

Hoping to find a way to get tint on my vehicle's windows. That would help too.

@windyshores Every car I have had, has gotten the window tint job done. I even had my husband's truck done. Of course, the tint place always tells me I shouldn't have the windows in the front [driver and passenger side] done, and their receipt even tells this, but I have it done anyways. One time when I went to court to argue a tinted window ticket, I had taken my medical books, showing my arguments. I also postured that by not allowing the tint, both the courts and law enforcement were not allowing me to live as normal a life as I could, and would reduce me to becoming a vampire, coming out only at night! I told them the window tint was not vanity, but a medical necessity. Won that case.

I have additional health issues that cause bruising due to medications. It's part of the price I pay. Long sleeves go a long way to not being so ugly looking on my arms!
Ginger

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?

I have extreme temperature change intolerance and the heat destroys me.
I’ve had complex health my whole life and they’ve never determined how to help.
I’m about to embark on cleanses for mold/mycotoxin/fungus/parasites with a naturopath who treats Lyme - I think it’ll take a couple years to finish and then make a maintenance plan.
I’m becoming convinced that it’s not the heat itself but things/changes in my body that cannot tolerate the heat that then makes me sick.
I get a certain headache that feels like cold air being blown on one side of my brain. It can last for months and is so distracting. I’m curious if it’s fungal sinusitis and am going to ask my gp about this.

It’s possible the heat it triggering something like activating old infections or something.

If I learn anything I’ll come back.

Definitely learn lymph drainage so if the Post exertional malaise symptoms you’re getting from the heat keep happening then at least the path the body takes to flush out flu symptom causing stuff - is open and toxins have an easy way to leave ur body as then come in contact with it.

It’ll help symptoms either way.

Best of luck!

There is a difference between reacting to heat and reacting to sun. I am sorry you are having these issues and naturopaths can be so helpful.

Can you elaborate on what you’re saying there? I’d love to learn more and make sure that I’m following your intentions wi the that statement well.

It’s my understanding that huge part of our reactions to the sun have to do with the heat, the change in temperature, that triggers an auto-immune response. I assume this is why we can see similar PEM post-heat exposure as we can PEM from over-exercise.

When you’re referencing a difference there are you referring to the role of the sun to our internal zarcdian rhythym cycles, (as an example of processes)?
Like how we take in vitamins from the sun that affect our bodies overall health and response. So for example how we take in vit d from the sun which affects our melatonin production that affects our dopaminergic systems?

Would love to hear more
Thx!

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.

@thisoldewe I do believe that sunscreen you mention is “Elma”. I happened to come across it while browsing a pharmacy last week in Ontario. I was not looking for it, but it caught my eye because of it’s spelling - so close to the spelling of a topical anaesthetic called “Emla” which was applied on my daughter’s arm before injections given in clinics (she was terrified of needles as a child). I remember thinking about the similarity of the two names: “Elma” and Emla (topical anaesthetic).

I googled “Elma”, however, but thst showed no results, instead taking me to “Emla” - so now I am confused! 🤷🏼‍♀️