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Thread: PHOTOSENSITIVITY in LUPUS

  1. #61
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    Well i'm the same as many other's just glad i read this thread. For one if i sit outside for 10mins the most when the suns out i feel like a chicken dropped out the oven. I get skin rashes and blisters on my face and i had the butterfly rash a good while ago and i do feel sorry for other member's suffering that because it just drags on before it wants to leave and the soreness is unreal.
    The specialist as had my eyes tested and they're in a bad way for reading and outside i wear tinted glasses but having the epilepsey ontop of thing's does'nt help where light's are concerned and now my canopy sunbeds had to go and i'm not pleased on that score i love having a tan but it's the soreness afterwards which gets you down.

    Terri x

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    I am sorry to hear that your reactions to the sun are so extreme. Most of us find that we must avoid the sun (as well as fluorescent lighting) at all costs. We have to cover our bodies, from head to toe, before going out into the sun and wear sunscreen ALL of the time. Even with all of the precautions, we still make sure that we avoid the sun as much as possible. Tans are a thing of the past......sorry :-(

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    Quote Originally Posted by Saysusie View Post
    I am sorry to hear that your reactions to the sun are so extreme. Most of us find that we must avoid the sun (as well as fluorescent lighting) at all costs. We have to cover our bodies, from head to toe, before going out into the sun and wear sunscreen ALL of the time. Even with all of the precautions, we still make sure that we avoid the sun as much as possible. Tans are a thing of the past......sorry :-(

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    Tans might be a thing of the past but we hardly have summers here anymore but like yourselves i have to cover up well and where 50 block to protect myself, such an annoying condition for us all.

    Terri x

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    Hi, i want to thank you for these posts and for the whole forum, this looks like there will be a lot to learn here, there is a lot i need to know.Thank you to everyone here !

    Rosi

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    Quote Originally Posted by Rosi View Post
    Hi, i want to thank you for these posts and for the whole forum, this looks like there will be a lot to learn here, there is a lot i need to know.Thank you to everyone here !

    Rosi
    Hi Rosi! Welcome to WHL! Glad you are finding some useful information. There are great people here and it helps not to feel alone!
    Mari

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    It is so good to hear these words. I get so sick from the sun. I have to drive in it all day for my job. If I don't use all the precautions, I will fall asleep at the wheel. It's hard to function. I sometimes miss the vitality I user to have. Yet I am blessed to have a lot of people who love me.

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    Tammy the sun is lethal mate with how we suffer and i could'nt drive in it all day like yourself, i'd most likely end up being sick.

    Yes you've got loads of love and support off us all here.

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    Quote Originally Posted by lovedbyHim View Post
    It is so good to hear these words. I get so sick from the sun. I have to drive in it all day for my job. If I don't use all the precautions, I will fall asleep at the wheel. It's hard to function. I sometimes miss the vitality I user to have. Yet I am blessed to have a lot of people who love me.
    OMG!!!!!!!!!!!!!!!!! Thank you so much for mentioning this! I quit my job as the assistant county librarian because a big part of my job was delivering books all over 2 counties. I was struggling to stay awake while driving but did not know why. I was just diagnosed a couple of days ago with Lupus, so of course I did not know about this. I have always been extremely sensitive to sunlight, but did not tie it to the sleepiness while driving. If I am not driving I just can not stay awake and sleep if we're going very far. This makes SO much sense now!

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    Quote Originally Posted by GeoKasher View Post
    OMG!!!!!!!!!!!!!!!!! Thank you so much for mentioning this! I quit my job as the assistant county librarian because a big part of my job was delivering books all over 2 counties. I was struggling to stay awake while driving but did not know why. I was just diagnosed a couple of days ago with Lupus, so of course I did not know about this. I have always been extremely sensitive to sunlight, but did not tie it to the sleepiness while driving. If I am not driving I just can not stay awake and sleep if we're going very far. This makes SO much sense now!
    I had an OMG moment as well when I figured out that the sun was making me ill. I have to wear sunscreen outside and in fluorescent lighting. I feel bad, I turn red (not like a sunburn because if it is brief exposure it goes away). I just purchased tint for my car windows because i get so ill when riding in the car. Isn't it nice to know that you are not alone?

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    Yes, it is! I'm just putting together all these odd symptoms I've had for so many years and realizing that they are all related to the Lupus. I'm reading a book on Lupus and every day I stumble upon something else that ties in with it that I haven't even thought of as being a Lupus symptom.

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