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Thread: PHOTOSENSITIVITY in LUPUS

  1. #11
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    Default Me too!

    I recently moved to NY from FL and the relief from the sun was immediate! However, as the seasons change and we enter the spring, it's all going to come back! Just today I have been feeling lousy (the last three days really), and its because i got some sun. I have big sunglasses, the kind that fit over my eye glasses and cover all sides, and they are my savior. I used to have to wear them indoors from time to time, the sensitivity is that bad. Especially around fluorescent lights. Has this been tested somewhere, i was never sure if it was just me being crazy.

    Good to be back to the forum!

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    It is a known fact the fluorescent lights are as harmful to Lupus patients as is sun exposure. So, you are not going crazy. You are absolutely right in feeling that fluorescent lights bothered you! We are told to avoid them just as much as we are told to avoid sun exposure! :lol:

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    And that is why I am getting a fish and naming him Rupert!


    Quote Originally Posted by lucky7
    Wow, im happy i read this one too!

    I went to Florida to visit my inlaws and i was inthe sun with my daughter and when we got back to the house i flared so bad that i was done for the rest of the day! I almost threw up on the way back to the house and i got so tired i thought i was going to fall over.

    Light hurts my eyes so much these days too. I have trouble watching tv sometimes, it will kick in a migraine sometimes.

    My kids are having a hard time when i flare up,they're not used to mom being "out-of-it" so much. I'm the caretaker of so many of my friends and family that now their having a hard time understanding me not doing everything i've always done.

    I feel sad at times because of this. I'm also finding out that i really dont have TRUE FRIENDS. That hurts but i do try to be upbeat,I LOVE my animals thats for sure! They're there no matter what! LOL

    Actually my husband even kicked it up a notch in the taking care of the kids,house etc.!

    Out of something bad comes something good! Right? WOO HOO for that! LOL
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    I am happy this Sticky has been informative..

    Others things to consider when photosensitive to protect yourself...

    1. Minimize outdoor activities between the peak hours of 10:00 am and 4:00 pm or adjust to your area.
    2. Avoid reflective surfaces such as sand, snow, and concrete
    3. Wear clothing to block UV rays.
    Try...Rit Sun Guard Laundry Treatment UV Protectant
    4. Use “waterproof” sun-protective agents such as sun blocks or sunscreens
    5. Install low wattage overhead lights.
    6. Use task lighting
    7. Replace fluorescent lighting with full spectrum or natural lighting
    8. Eliminate blinking and flickering lights
    9. Install adjustable window blinds and light filters
    10. Limit time on computer. Monitors can bring about photosensitive symptoms.

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    Oh no! Say it aint so! Not my monitor!

    I have had lupoid sun sensitivity for over 20 years. If I go out in the sun I will get nasty pustules on my face within a few hours to a day along with a flare of some sort. What helps me the most is the special UV protection clothing. Only problem is it is so expensive. I have two hoody ilght sun jackets, one from Solumbra and one from Coolibar. I wear the hoodie or a scarf under my very wide brimmed hat. Then I slather sun screen on my hands and face. I make sure I take vitamin D too.

    Lucky7, I'd surely die of neglect without my animals. I lost my horses and chickens due to lupus, but I have 4 great dogs and a parrot that thinks I am awesome lol

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    I two have heard about monitors causing problems apparently you can get acsreen to go over thme not that i have yet got one myself!! adn don't know how i would live with out my laptop!!
    and as far as sunny florida i lived there for years returning to engalnd the last time in 1989 and never remembered having a problem then but i since been back on holidays i have noticed a huge difference i can only go certain parts of year! i went last year in begining of september and found it the hardest thing ever swelling up like a ballon extreme fatigue if i was actually out in the sun it was like i could feel my blood boiling with in minutes i went out with my now ex for my birthday and he just couldn't understand my limitations and soon after we split, but then i went out december for my first xmas there in 20 years! to be with my step mum in our second xmas with out me dad and i soo noticed the difference thou i still swelled it wasn't half as bad! my fatigue was trying to do to much rather than just being there and the blood tingling didn't happen at all and i agree always get at least 30 i normally go for 40-45 sun factor and with that extra uv protection!! and kaftan style tops and hats where possible!
    i have noticed thou with our snow flurry we had recently that snow starkness hurts my eyes and some shops with thier blairing lightage!! and you look like rodney going round the shops with them on but if it stop headaches and eyes aches its worth it!! ok gone stop rambling now!!

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    I have not been feeling very good for whole last year and I noticed that my face get much more red in any light and hot temp. It is only started when I started to feel bad last year. I photosensitivty gets worse when your lupus in not in check???????

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    Quote Originally Posted by ssingh View Post
    I have not been feeling very good for whole last year and I noticed that my face get much more red in any light and hot temp. It is only started when I started to feel bad last year. I photosensitivty gets worse when your lupus in not in check???????
    For some it may be like; which came first, the chicken or the egg. When I get overheated which for me is 74 degrees +, my face will get worse and can effect my entire body, but it usually doesn't. My fatigue might get worse for a few days but nothing serious. If I get a virus or am run down, the lupus flares, the face gets worse whether I have been exposed to heat/sun or not.

    For me the severity of the rash progressed over the years and instead of being in control or out of control, I became more sensitive to sun and heat. In other words, if I get overheated and my face shows it, that does not mean my lupus is any worse. It just means that I should not have exposed myself to the heat/sun. If I were to continue being exposed to heat/sun, It probably would trigger a flare.

    IMHO, I would say, if you have been diagnosed with lupus or other related auto-immune issues, this may be your body telling you to avoid heat/sun. It doesn't have to mean your lupus is worse, it may just mean your body is growing more sensitive. I thought of it as being allergic to the sun/heat. My sun allergy gets worse the older I get. My lupus hasn't really changed for quite some time, but it is important to communicate every change with our Rhuemies.
    Ayah
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    Thanks so very much, then it is more like sensetivities are getting worse rather than lupus not as much

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    i AM GLAD I READ THIS I ALSO HAVE BEEN HAVING TROBLE WITH THE SUN AND MY EYES. ALSO HEADACHES FOR ABOUT TWO MONTHS NOW. THANK YOU bONITA

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