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Thread: The vampire queen

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    Question The vampire queen

    My question, is sort of a two part question. I'm gonna backstory before I ask so maybe some people can relate to either lol

    First, I have had photosensitivity since my early teens (I'm 27) over the years it has slowly progressed in its seriousness. So much so that friends & family lovingly (ha) refer to me as the vampire queen. I love the sun, but the sun most certainly doesn't love me. My fairness (I'm a Casper white "day walker" lol) doesn't help any. I do a lot of fishing on the lake, gardening, sports with my son, etc so the sun & I have had to come to terms. However well this arrangement has worked in the past, within the last two months, our agreement has been nullified. Normally I'm ok so long as I wear my hats, nuclear proof suntan lotion & long clothing. But...and it's a biggin...that isn't the case now. When it first started my doctor had thought I'd gotten bit by some funky spider. It started as an ulcer like sore & then my face blew up two days later. And when I say "blew up" I mean like a blimp. The swelling was so profuse & painful my face began to sag as if I'd suffered a stroke. I couldn't open my mouth to eat (it was on my lower cheek) & after a clear mersa test, my dr put me on two weeks iv vanco. I thought I was good, until a couple weeks later I got another sore. The rest haven't swelled like the first (I was in er, i really think it got infected there) but they have been painful & horrid looking. About my 5 or 6 one I started noticing they all lied below the shade of my ball cap (where the sun hits). Then at my son's baseball game, I took extra precaution. But as the game progressed I kept complaining to my husband that it felt like the sun was legitimately cooking me. An hour after the game (out of the sun) I was beyond lobster, and much to my alarm after using the restroom, I was even "burnt" through my jeans & long-sleeved shirt. I then took my mom out for early Mother's Day shopping, as time progressed my pain grew. My mom kept commenting about how red I was getting (I'd swapped to a tank top because it hurt too bad). By the time we'd finished shopping my mom grabbed me & startlingly pointed out those same blisters now covering my arms/shoulders/hands. By the time I got home I was in misery. Not from the familiar burn, but bone breaking joint pain. It was horrible. I went to bed after taking my pain medicine for my back (from my spine surgery, that I've hardly had to touch). But soon after going to bed I woke up to excruciating pain. Much to my alarm-my fingers, wrists, elbows were enormously swollen. To be completely honest, my hands looked like they belonged to the stay puff marshmallow man. I couldn't even bend my fingers, the pain was so intense I felt like I was going to croak. My husband wanted to take me to the hospital but I felt ridiculous going in for sun burn. I took another dose of my prescription pain pills (I normally have ever had to take one the few times I've had to, but can take two) and popped some naproxen even though I'm not suppose to because of being on blood thinners. I sat painfully in the tub for about two hours-the hot water burned the burn, but it eased the joint pain-what I couldn't bear. Eventually it eased up enough to sleep, but didn't really subside until the next day. The day following I began to get more lesions on my face & even my ears. Everything that was covered in red was covered in sores. Since then, I've sworn off the sun until evening but despite my hope, that isn't good enough either : ( long durations are still causing the joint pain & the sores. My first thought would be a sensitivity due to medication, but my drs have taken me off of everything except the blood thinners & my seizure medication-neither causing light sensitivity (I even called the pharmacy to double check).

    So my first question is-has anyone experienced sudden light sensitivity?

    And is there anything else that I can be doing?

    I can't stand living like a nocturnal hermit, any advice is more than welcomed!

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    I really can't say much about the rash, I never get them but I do get very bad joint pain, nausea, headaches, muscle pain, tendon pain and mouth&nose sore, after being in the sun.
    It looks like you might have to stay out of the sun.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    I think that you will find that the majority of us here are "Vampires" due to our reactions to the sun. While my reactions have not been as severe as yours, they have been pretty bad. I've had what we call "ulcers" inside my mouth and nose, open lesions on my scalp and skin (which causes extreme inflammation) on my hands and the bottom of my feet (to the point that I could not walk). And I've had horrible red rashes that itch and burn at the same time.
    When my Lupus is active (as I suspect yours is), just 2-3 minutes of exposure to the sun will cause severe reactions and, like you, protective clothing and sunscreen do little to nothing to help. During those times, I avoid the sun at all costs. If I have to go out, I do the sunscreen, protective clothing, the hat, sometimes gloves, and an umbrella (carry my shade everywhere I go).
    You are not alone and I wish that I could give you advice that would end your reactions to the sun, but I can't. I do hope that you and your doctor can find a way to help you to avoid these reactions. I wish you the best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Thank you for the responses. I know so many are affected by photosensitivity-as you mentioned scalp involvement was one of the first symptoms I had years ago & I pretty much live in my hats lol what I wasn't aware of (pretty much the reasoning for my post) is how bad it can get, but more so how fast it can do so. In honesty, I'm kinda in shock-this has reached a very fearful level for me. I did wonder if it had any association with an "active" phase-for the last two years my activity level has seemed "controlled" (it's not really the appropriate word, but what was once 24/7 flare time has ebbed down to a month or two in between). However, despite my objections, due to surgery & the overall complications of infections/healing etc, my physicians abruptly stopped everything (as I said above) "incase" --namely the plaquenil--would knock my immune system even further. I also knew that the added stress potentially upped my risks of going into a hardcore flare. I know from my seizures (which have also become more active as of late) that stress in any form, can really knock our bodies for a loop. I was more so wondering if this could possibly be temporary, or another permanent step back.

    On a side note (incase this may help anyone else, idk if its circumstantial or not) but last few nights I've begun having the familiar unpleasant chest pains that come with paracarditis :-/ the last twenty four has been almost intolerable (my doctor is seeing me Friday morning, soonest he had). This afternoon, I'd simply walked to my garage & back, and my exposed arms immediately began to redden & itch/burn, and the joint pain is rearing its ugly head again--never experienced anything so swiftly. I'm really dreading my son's game tomorrow, but it's funny you mentioned an umbrella lol my husband went out the next day (last Sunday) and bought me the biggest rain umbrella he could find! I have to admit I'm going to feel awfully awkward, normally I'm out on the field (coach pitch, it's my son & my sport) with my crazy getup, but for now I think it's best I stay on the sidelines.

    Sorry if that's a lot of rambling, I'm a wee tired from the annoying flopping going about in my chest, & figured what better place to visit when I'm feeling uber frustrated! Thank you again for response, and I do believe you are right. Fingers crossed this backs off to a functional level in the future! I'm certainly already tired of watching all of the gallant sunbathers basking in the glory of the wonderfully, somewhat evil sun whilst i sit in my hobbit hole Lol

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    Just thought I'd update: after seeing the doctor & having some tests run looks like i have paracarditis & pneumonia : ( so hopefully this is all flare related issues, time will tell!

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