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Thread: PHOTOSENSITIVITY in LUPUS

  1. #51
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    Hi
    Ive often ahd this thing that il work around house no lgihts on or only small ones visitors come and say ohh its so dark put main lgiht on it hurts my eyes so bright.
    i thought it was due to heyfever that id always avoid sun and sunlight wearing sunglasses all time in sun.
    partly true as sunglasses will stop flaoting pollen getting into eyes.
    feel just normal really as my partner also doesnt like birght lights wears sunglasses or it blinds him.

    so in my mind reading this im just trying be real and not say oh it must be lupus casue im not yet diagnsoed.
    all i can do is write down what occurs tell rheumy and he does the deciding whats wrong or not wrong with me.

    hope i making sense.
    i do however have problem with flourenscent lights my face feels likes it burning hot an i get hives start up on upper cheeks,never used to get this could it be methotrexate or what docs say may be lupus?
    melly c

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    This may have been answered already and I just missed it but does anyone else have problems indoors? The lights at work and at the store send me into a flare. I now have to wear long sleeves at work and sun protection as well as keep one of the two lights in my office turned off. This doesn't fix it but it makes me able to make it through the day. I have always been an outdoor person but now I can't seem to handle any light at all.

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    Just read this thread through. Its just so obvious after reading it!!! In summer, especially when we are on holiday (only in UK) I get so uncomfortable, and exhausted when we walk in the sun. I wear varifocals , which are reactolite, but not really dark enough, as I told my optician. They advised to get sunglasses with prescription in for this year. I always avoid the sun when I can anyway, have alwlays found it unbearable, friends think I am crazy, as if its only around 75f I complain it is too hot. I then get rashes mainly on face and neck, arms if not covered. Headaches, and the fatigue (the ever lasting fatigue!!) My eyes hurt permanantly when its bright. I now use eye drops as they get so dry. i am usually ok at home, we have the lights fairly low, and ofcourse no strip lights. At the hospital I find they hurt my eyes though, and cause headache by the time I leave. Thanks for this, it makes so much sense, especially when trying to get a diagnosis
    mabeljane

  4. #54
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    Quote Originally Posted by Saysusie View Post
    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:

    Peace and Blessings
    Saysusie
    Thank you! This answered my last questions perfectly! I thought I was losing my mind

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    Hi i just got rheumy letter actauuly now says photo sensitive on ti and sle in writing,yes like you barbs i always felt sick in sun eyes hurt cartn ber brightness,inside lights or excessive het sa in a cafe/resturant concert starts rashes off feel ill almost threw up at last rheumy apointment due to flourenscnet lgihts no covers ones with covers i burn slightly.
    always in dark hubby puts light on.

    so al makes lot sense.

    i tried factor 30 helped a bit but not enough so gonna ask gp for 50.

    thanks this post very helpful.

    melly c

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    So here's a question.

    My skin in different areas of my body is always itchy. Always the exact same places, but, large areas. There is nothing there, no rash that can be seen, except when the area heats up. Either from a hot shower or being in the sun, or hot weather. Then it shows up bad. large red area, with blotchy spots all over, it kind of hard to describe, but, there are pale circles in a red area, and the whole thing itches.

    I get the same thing on my legs and arms except it doesn't really itch, it just looks awful, and always after I have been in the sun, like at the pool, or the beach, something like that. I don't usually go in swimming, just not my thing, so, it's not from the water. It takes hours to go away.

    Any thoughts?

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    Saysusie,

    you say that you have several pairs of sunglasses; any suggestions on effective brands?

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    The reason that I have so many is that I keep falling for the advertisements about how well they block out the UV rays and how well they help prevent glare.........
    So far, the best sunglasses that I have found were not the super expensive ones that claim to do everything short of washing your underwear!!

    Go to a golf shop and try on their glasses. I spend approx $40.00 - $50.00 max and have found some really good ones at the golf shops!! I cannot remember the brands because I do not pay attention to that. I purchase based upon comfort, reduction of glare, and UV protection!!

    Good Luck!!!

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    I always wondered why I tend to wear sunglasses alot, even throughout the winter months. It just seems more comfortable to wear sunglasses, and less strain on my eyes. I am going to an opthomologist for the first time in a couple of weeks. I usually only go to an optomotrist who is not an eye doctor. I will ask him if my current sunglasses are OK for the UV rays and Lupus. I am very happy that most of the price of my glasses are covered through my health insurance, and if I choose particular brands I do not pay anything.
    Diagnosed with Lupus - 22 June, 2010

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    I'm not sure if they're still there, nor do I remember the name on them, but I found the $4 pairs (maybe $5 or $6 by now) in the discount stores' sports department work rather well also. I can't remember that term they use... but it "kills" the glare from the water... They aren't exactly "pretty" glasses though, even for a guy... lolol
    Last edited by jmail; 07-25-2010 at 08:39 AM. Reason: removed blatant commercialism... lol

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