BUTTERFLIES AMONG US

LUPUS/Fibromyalgia and more: Support for all

Ok so this is my first offical summer being diagnoised with Lupus so I need some advice on what I need to do in the sun. I don't go back to the rhumy till june 18th and I already have a camping trip planed for the begining of june. I am absolutly clueless on what I need to do and not do. Please Help!

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Wow ! This is the hard part for me...If you are sensitive to sun { most of us are} You need to get Neutrogena Ultra Sheer Dry-Touch Sunblock SPF 55..It works well...You will need to avoid exporsure as much as possible, I wear long sleeve shirts, pants and hat most of the time, as the sun zeros right in on me! I try to keep the sunscreen freshly applied at all times. I just messed up last month and got way to much sun ..sent me into a flare which I am still fussing with ! And the break out really makes me sad and mad at the same time ! Good luck and have a great time !! Hugs

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I have never really noticed a rash from the sum other then my face gets fire engine red! And I get horrible migraine when I'm in the sun to much. What else should I be looking for?

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Since I get really nasty reactions if any "SPF" comes near my skin - covered in pin prick size blisters-painful & itchy, I've really had to dig around to find a sensible way of surviving. I loove the very light weight cottons - long skirts, long sleeved blouses, big sun hats (don't really like hats, but.....), then there are very fine light wt synthetic fabrics that are good too. I find olive oil, sesame oil & castor oil can all be gently applied to the skin & are somewhat protective & moisturizing.

I used to get nasty headaches in the sun but found that chriopractic & cranial-sacral/Upledger has helped immensely to lay them to rest, so has Reiki been useful too ~ combinations ?? - likely

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My rheumy recommended that I wear long sleeve shirts, pants, and a hat at all times.........but I like to swim for exercise. Most of the time I do wear the long shirts and pants. When I swim I use Neurtogena Ultra Sheer Dry touch sunblock SPF 55. My rheumy recommended that I apply it at all times. So I use a lot of sunscreen. I only swim from 8am until 1000am then 430 pm till 730 pm when sun is not quite as bad. If I don't my Lupus flares up really bad. Hope this helps.
Lots of love and hugs,
Kimber

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Hi, I'm new- first post. :)

The sun thing is a biggie for me too, which is fairly new since I've had lupus for a very long time. One of the things I have to be very careful with is my medications and supplements as some make me much more sensitive to the sun. I think this is true with many people, and they don't even know it. For example vitamin B2 is really helpful for some Migraineurs, but it makes the user very sun sensitive. Those taking large doses (as in Migraine treatment/prevention) need to especially protect their eyes as damage can happen much faster.

The issue of sunscreen allergy is also trouble for me, and I'm still trying to find something that works well. I used to use a product called Purpose - expensive, but didn't make me break out. I can't find it anywhere now tho, and just ran out. Spent some time in the sun, so we'll see how I fare. Usually I try to cover up or just not go outside until dusk. I'm an outside girl tho, and I dearly miss my time with my horses etc. This is probably the hardest aspect of Lupus (mentally) for me and makes me feel very isolated. I would about kill for a shady, screened porch to lounge around in...

Good luck. If you find something neat, let me know!

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Thanks everyone!! I have found bannan boat with an spf of 85 I'm gonna give that a try and see if it works. I'm haveing a very hard time with the thought of staying out of the sun all together or wearing long sleves :( I uesed it yesturday for the little bit I as in the sun and seems to have worked ok. But I limited my time in the sun and mostly stayed in the shade. I'm worried about when I go camping and there is no shade. Thanks again everyone!!

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Girl .. wear the highest sunblock you can ..wear a hata nd stay covered as much as you can.. just dont over heat.. Im going to the beach in acouple of days I ahve a big wide brimmed hat.. 45 sunblock and zinc i put on my malar rash.. i can only do morning and evening.. thats the besta dvice i can give.. huigs mel

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Thanks everyone!! That is a great tip Naomi I would not have though about that!

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