Comments on: Fluorescent Light Bulbs and Lupus

By: Jocelyn

Jocelyn — Tue, 04 Oct 2011 00:21:04 +0000

I have Lupus and I am extremely senstive to artificial/indoor light, especially flourescent light. It burns my skin and at times I break out in the malar rash. UV light hurts my joints, causes confusion and memory loss, and makes me very tired and nautious. I read that UVB rays are toxic to some patients with Lupus and I believe it because it feels that way.
Working on the computer for an extended length of time makes me very ill, causing headaches, swelling around my eyes, and a rash over my neck and chest ( even though I have a screen that apparently absorbs the UVB rays)and face. . .
I rarely go to shopping malls and I try to stay away from large department stores because the extreme lighting can make me break out in a sweat..
I am currently seeking help from the Department of Rehabilitation to find a job since I cannot work under light bulbs. I can work in a room lit by sun light with the overhead lights turned off.

The disabiltiy department at my university allowed me to have filters installed on the lights in the classrooms. It made a significant difference ( I still felt some effects from the light but it was an improvement and I felt better). I was able to finish school and graduate, which was huge! .

The degree of my photosenstivity varies, but currently it is not too bad. At least I can turn the lights on in my house at night and they don’t bother me. (I only turn on the minimal amount necessary to avoid flares). I must find fitlers for my home light bulbs (any suggestions wear I can buy them?) I have spent many evenings sitting in the darkness studying for exams wearing a tiny flashlight strapped to my forehead. But hey, it works!

I seem to be more more senstivtive to flouresecent light than sunlight ( sun can make me very ill but it is rare) , although I am very careful in the the sun and I wear sunscreen daily along with a hat and glasses. I aslo wear them indoors. UV blockers on my car windows really help as well. .
It was a horrible shock when I developed this degree of photosenstivity three years ago. (I’ve had Lupus since 2001) and I never imagined I would end up living in a world without UV light . But I have overcome my depression and I am looking forward to finding a job. I am happy today and hopeful.
In January, I will be taking Belysta which may reduce the extreme fatigue and photosenstivity.
…Keeping my fingers crossed and will let you know!.
I am really comforted by this site and all of your posts. .
Jocelyn
Los Angeles

By: Kelley

Kelley — Sat, 24 Sep 2011 01:00:34 +0000

Tonight I went to an Old Navy store and got so sick standing on line for the register. This particular branch has circular florescent bulbs hanging over EACH register about three feet above the cashier’s head. Like many others, the lights give me rashes and panic attacks. It also actually spikes my temperature and gives me drunken-like blurry vision. The skin goes red and it begins. In that moment, I want to jump out of my skin. I mentioned it to the manager. Asked her if she knew that florescent bulbs could actually make people sick. I tried to explain it to her and noted that i wasn’t blaming her for the store’s condition. She rolled her eyes and attempted to hold back her laughter. I just wanted to inform someone. I’ve been screaming inside over this issue(and over the fact that most people couldn’t care less)

By: kate

kate — Thu, 08 Sep 2011 05:58:20 +0000

How about the government quit telling us what light bulbs we use?
Hello? America?
Are you there?
How sad to hear of so many who are getting sick trying to follow the ridiculous rules of those who don’t even read the bills.
I am worried about the mercury and the illness caused by such foolishness.
Stop whining and call your representatives and get it together.
God help this country.
Get strong, get active.

By: Kay Sumner

Kay Sumner — Thu, 21 Jul 2011 04:40:59 +0000

I had an interesting experience with flurorescent lighting in a lamp this past week. I went to a friend’s house to play Mahjongg and sat most of the afternoon by a lamp with a fluorescent bulb in it. My face started to feel hot but no one else complained of the heat so I didn’t say anything. Then the lady across the table from me made the comment that my face was extremely red. I decided to turn off the lamp and gradually the redness started to subside. The same thing happened the following week to another lady who sat in the same chair with the same light near her. Neither one of us has been diagnosed with lupus and don’t seem to have any specific health problems although we’re both close to 70 years old. A couple of years ago my husband put fluorescent bulbs in the fan above my computer. I started having problems with my eyes so had him take them out and my problem went away. I guess one doesn’t have to have lupus to have a reaction to those bulbs. I dred the day we can’t get incandescent bulbs so I am also stocking up on them.

By: Beth

Beth — Tue, 14 Jun 2011 17:46:48 +0000

This is very interesting! I have another of the inflammatory diseases–sarcoidosis–and possibly MS or Lyme. I am also extremely sensitive to fluorescents. I now wear NoIR glasses–special sunglasses that block both the UV and IR rays. I use them in stores and also while using the computer and watching TV. They help immensely! I still have a lot of trouble going to a store, perhaps because the light is so intense, but at least I can feel pretty normal at home (until we are forced to switch to fluorescents at least!).

What I find very interesting is the common reaction that people with various illnesses are experiencing. It really makes me think that a lot of these diseases may be related, just expressed differently in the body. I suspect that if connections can be made, the illnesses won’t be considered so rare, and perhaps more resources will go toward finding cures. My personal belief is that particularly resistant bacteria are the cause, and that somehow the bacteria are upsetting the immune system. I also believe that the “treatments” currently offered (steroids), which turn down the immune system, may be enabling the bacteria to continue to spread, and in fact, speed up their efforts to take over the host (us!). Steroids and other anti-inflammatories make us feel a lot better temporarily, but what is the price!?!

Perhaps each disease group needs to encourage its members to start documenting their reactions to light and to pass on the information to our Senators and Congressmen as well as our doctors. Maybe if enough people with all of these conditions begin speaking up, some of them will start listening.

And maybe we also need to start reading about some of the other inflammatory diseases and treatments as well as our own. Perhaps WE need to help the researchers broaden their views from just one disease to the common elements of many.

By: dayze

dayze — Mon, 16 May 2011 21:36:23 +0000

You guys are right that there is something bad with florescent lights.
The on/off/on/off flickering is one of the most dangerous things.
My neurologist teaches me that the on/off/on/off effect works like sand paper on the brain stem.
With people that have brain or nerve damage, it effects them even more severely and quicker.
Within 10 to 15 minutes of being under florescent lights my eyes have to start squinting and I have to use the peepers or little readers
that I have to carry in my purse to distort the light waves so I can see.
I cannot see things without them while under the florescent lights.
One of my employees used a florescent light lamp to work under at home, and it has destroyed her eyesight.
she also has all of these black moles growing on her face and neck that have come up after she started using the lamp.
I keep warning her, but she doesn’t believe me that light can effect her.
Some people believe only what crooked doctors tell them.
I learned early in my life that Doctors can lie to you, and it cost me
my health.

By: Janelle Hooper

Janelle Hooper — Sun, 03 Apr 2011 18:31:56 +0000

In the nineties, I butterflied after a doctor’s appointment where the room had a very low ceiling. I’ve also had a butterfly rash after using a homemade light box that had flourescent lights for art projects.

By: Sandra Davis

Sandra Davis — Wed, 09 Mar 2011 01:04:35 +0000

I was DX’d with fibro and Lupus antibodies back in Nov 2010. I am in the process of being tested for MS and not through being tested for Lupus. Flourescent lights make me have pain across the tops of my eyes (on my lower forehead) and I stay sore in that area. My eyes feel scratchy and like I am so sleepy I can’t keep them open. Recently at work I have started turning the lights off directly over my desk and that has seemed to help a lot. Told my eye Dr about this when I went for my last eye exam and he said I just have dry eyes and to wash my eyes every night with baby shampoo and use artificial tears. That didn’t help at all and the artificial tears seemed to dry in my eyes and make it worse. I also am hypothyroid and I have been dealing with this for 8 years. About to loose my mind and have been hurting so bad since a cold front blew in 3 days ago. Tried to contact my Rheumatologist today but she is very difficult to talk to on the phone or to even get an appt to see her.

By: Kathy LP

Kathy LP — Tue, 04 Jan 2011 20:10:54 +0000

Well, I didn’t think to associate my dull headaches with the light. Good to know. I have Lupus and FM and did learn my face turned red when under fluorescent lighting but pretty much ignored it until people at work started asking what is wrong. I finally figured it out with the help of the director where I work and the lights above my desk are turned off. I still am under the light in different areas of the office and, of course, stores. I’m grateful I found this sight, as I know now that it can be more then just the red face. Thank you.

By: mary dilaura

mary dilaura — Wed, 29 Dec 2010 06:39:57 +0000

i have this problem , i sit in the dark and call myself a vampire , i just burn up from being in the light , i have had blood test for lupus , but they always come out negative , but i have a butterfly rash too !! and have been diagnosed with fibromyalgia , i also have hypothyroidism and hyperparathyroidism that resulted in a huge kidney stone , but has been removed , and after my surgeries i come out with the butterfly rash from being under the lights , what can i do i am lost here !!!