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BonusMom
03-30-2009, 05:11 PM
At the risk of sounding like a total blonde (I come by it honestly), I need to ask a question.

I haven't had what I'd call photosensitivity ie rashes or ulcers after being in the sun. I've noticed that after having a couple of days off of work when I return on Monday my brain fog has increased and my head feels like it's swimming.

Could this be due to the fluorescent light from my office? I have no natural sunlight nearby, so I don't feel like that makes a difference.

Angel Oliver
03-30-2009, 05:18 PM
Hi,

I would say yes. If im in the presence of florescent lights i become very off balance, drunk like, dizzy, feel sick and get hot. Then i get a good old panic attack for good measure. Then i have problems with my vision and carnt focus on peoples faces. I must look a right freak when i shop, holding onto things, like ive got vertigo or just look plain old drunk.I now wear tinted glasses ...oh with diamontes of course, trendy sparkly ones, and they seem to help me a touch.

love
Angel.xxx

BonusMom
03-30-2009, 05:27 PM
Dearest Angel, I knew I could count on you to bring a smile to my face with your response :). Yes, I can picture you with your diamond studded glasses, groping your way through a store (excuse me sir, I didn't mean to acost you, but since I did, let me introduce myself) ;)

I couldn't put my finger on what might be causing the Monday morning fog until today. Wish no one had to deal with any of this, but so glad I'm not the only one who is a space cadet. Perhaps this (fluorescent lighting) is why I don't enjoy shopping as much as I used to. Every time I do more than just weekly grocery shopping, I'm absolutely drained.

Oh, the wonders of lupus!

Angel Oliver
03-30-2009, 05:34 PM
Where i live there are no hunky shoppers so its usually old ladies :) How sad is that!! I used to love shopping too.Now im lucky to leave the house once a week.Hate it! 39 year old has been...thats what it feels like. My friend from work used to meet up and we'd shop like it was heaven. Now she doesnt bother asking cause i spent all the time bent over like the room was uphill.Or id be stood outside holding a wall.
I must say though, the tint does work, so try it, wear sunglasses in a shop, it doesnt stop it all, but does help. Hope you've been keeping well other than this.
Sending you gentle hugs. Oh ...you should see me sparkle in the sun...amazing!:yes:.
Love
Angel.xxx

mountaindreamer
03-30-2009, 07:29 PM
hi ladies,

angel, you must put a picture of the sparkley glasses on the forum. i love the vision of this.

bonus mom, sorry, but i agree with angel...it sounds like the office lighting....can you use a desk lamp instead of overhead?

i did not think about shopping, but that is why i now find walmart a nightmare....by the time i make it around the store, i am probably going into a flare, i do know that i am always wore out by the time i get out of the store. I will have to pay closer attention. thanks bonus and angel.

Rastagirl
03-30-2009, 08:11 PM
I am extremely sensitive to flourescent lighting....it causes me to flare and is very irritating to my eyes, so I thought I'd add something to this thread that I've been thinking about lately....

...This push for all of us to save energy by replacing all of our lightbulbs in the home with the new flourescent twirly ones. The thought of that has bothered me since they first arrived on the scene. I've refused to even buy one of them, but I'll bet plenty of people with Lupus have done so.

I know they're more efficient, save energy, keep the planet green, etc., but I have to wonder how many people with Lupus may have just increased their chances of aggravating their Lupus right in their own homes without realizing it.

Just a thought....I could be wrong....but personally, I'm not taking any chances.

Lori :cool2:

BadFlareDay
03-30-2009, 10:02 PM
We may not have a choice because they are trying to get the high energy bulbs phased out within the next few years.

brandichi
03-31-2009, 03:26 AM
I've been slowly stocking up on the regular light bulbs, because I too am sensitive to flourescent lighting, and I know that I'll be in trouble once they're phased out. So every time I go shopping, I pick up a box or two and store them in the basement.

I just realized yesterday that I am much more sensitive to the flourescent lighting than I thought. I had a great weekend, felt better than I have in ages, then once I was at work for a couple hours yesterday, I felt so, so tired and the brain fog hit me. It had to be the lights. I'm on vacation next week, and I've decided to invest in some floor lamps instead of using the overhead lights. Maybe the overhead lighting at work is why I never seem to get out of a flare for long?!

mountaindreamer
03-31-2009, 05:40 AM
stocking up on light bulbs is a great idea.

i originally bought the new swirley things, but have given them away. i am careful to use only original bulbs.

i wonder if there is any way to keep the original bulbs from being phased out....seems like we should be able to get some protection within the disabilities act or somewhere. hhhmmm wonder if we could do something as a group.

brandichi
03-31-2009, 09:04 AM
Great idea!! Where do we start? Contacting our legislators?

Mommyof1
03-31-2009, 11:02 AM
Hello all. I have not been diagnosed with lupus as of yet but am expected of it by my primary dr. I go see a rheumy this thursday. I get a red sunburn like rash when exposed to fluorescent lights. It covers my nose and cheeks and sometimes arms and chest. It burns and feels hot and is flat no bumps etc. Among alot of other symptoms that started at 15 with seizures and my latest 2 positive ana results(1/160 speckled and 243 as a high ana)I am suspected of lupus as I said. I never used to be reactive to these lights either. First it was the sun all my life but more apparent 5 months ago when it started giving me the rash and then like 2 months ago when the lights started to affect me. The rash never stays more than hours though. Could it still be the butterfly rash since it has the distinct pattern or just photosensitivity? Id love anyones input no who experiences it! :) I also get the brain fog thing as well. Have trouble thinking and remembering. I went blank on the day of my bday the other day for a second and freaked! Well I hope you figure this out because it bothers me to no end! Take care. -Brittanee

cptnblah
03-31-2009, 02:26 PM
I never thought of those bulb causing that. Maybe that is why I am always dragging at work and why it seems like I cannot get a break with flares. It seems like I am always feeling like...well you know.

Angel Oliver
03-31-2009, 04:06 PM
Mountaidreamer, ive put a photo of me wearing my specs with the diamontes on each side.Its a really crap photo and i look like i should be wearing a straight jacket. But imagine when the sun hits the side of them WOW....im a glitter ball.xxxx

love
Angel.xxx

P.s Its on my profile in the blurry photos of my hair n stuff...in there.xxx

mountaindreamer
03-31-2009, 09:13 PM
going right now to check out the glasses.

i love sparkles, and i love being eccentric with frustrating necessities. for example, since i have to carry around so many meds, i keep them in a Crown Royal bag....it is purple and fun....makes me smile.

mountaindreamer
03-31-2009, 09:15 PM
angel,

love the glasses.....let the sun shine.

hatlady
04-05-2009, 07:58 AM
I'm not quite as sensitive, but do find them draining if I'm cooped up for a long period of time ... at home, we have a lot of the new swirly bulbs, but my reading lamp is NOT. I tried it once. Lasted 5 monutes. Went back to the "regular" bulb.

There are filters to cut the UV, I typed in "florescent filters" in google and got a whole list. Here's one link that talks about them.

http://www.ergomart.com/FLUORESCENT_LIGHT_FILTERS/filters.htm

I have talked about these for work, we may eventually go to these in many of our lights. At home....I'm going to look for filters for "regular" lamps to see if I can eventually switch to a florescent next to my reading chair.