I noticed something interesting in today’s enewsletter from the Lupus Foundation of America.
Fluorescent Light Bulbs and People with Lupus
Some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus. Are you one of the people affected by fluorescent light bulbs? Please share your story with us at advocacy@lupus.org.
This has been one of those things that just dumbfound people when they see it. Jenny is super sensitive to fluorescent light. She will usually turn red and rashy within about ten minutes of stepping in a Target.
Oddly enough, the most dramatic example of this reaction happens in the doctor’s office. Those small brightly lit rooms make my wife butterfly almost immediately. I remember that some of the doctors were amazed at how quickly it happens. One doctor actually turned the lights out and then went to get a colleague in order to show him how quickly it happens.
I’ve seen articles about how we will eventually move almost entirely to fluorescent because of the impact on the environment. I wonder how that will affect my wife. Not only does she butterfly but she also tends to get headaches from the fluorescent lights. Maybe the technology will get better and the spectrum of light will be a bit more friendly for light-sensitive lupus patients.
If you have had any experience with this, I do encourage you to share your comments here and email
the folks at the LFA at advocacy@lupus.org.
A while back I wrote a post about the light bulbs and having issues with them.
Here’s the link- http://chronicchicktalk.com/?s=light+bulbs
I will never use those bulbs again… Hope you and your wife are doing good. Have a happy holiday if I don’t get back.
Hi,
I don’t have lupus, I have fibromyalgia but I have a horrific reaction to fluorescent lights… I get weak, disorientated, nauseus, shaky, vision impared and worst of all I have massive heart palpitations and chest pain and feel like I’m going to faint… all this happens within two or three minutes… nobody seems to be able to help me…. if anyone else has similar symptoms I would love to hear from you at aeracura@optusnet.com.au
~ jo
My name is Reta. I have discoid Lupus and also Fybromyalgia. I also have a reaction to florecent lighting. When shopping at certain stores with uncovered florecents I experince panic attacks, very much the same as your reaction. I.E. weakness, heart palp,shortness of breath disoriented, scared, I feel like I’m going to pass out. I will leave the store, find a place to sit, drink water or pop, and a chocolate bar seems to help. I will also take 1/2 immovane which is a pres. that I am on normally taken at night, but it helps me during the day at times.
I realized the problem with the flouresecent light bulbs about 9/10 years ago. Thank God I was aware of the problem when my office was relocatd and my employer took this into consideration and my work area was protected from the light, and the bulbs were taken out from the light directly above me. Recently it was necessary for my work area to change. While the move was taking place, I was under the lights and obviously being affected by them (even though I covered myself up with hats, coats,). I was relieved when the bulbs were taken out, because the light was not directly over me any more. I was still feeling affected by the light behind me and next to me and tried to position myself to avoid it, I know this is going to be more of a problem because there is going to be one more placed on the third side of me (where my old work area was, the divider was taken down.) I really did not think that just being out in the area with the light would hurt me, are there any suggestions on how to protect myself?
I never knew why when I would brush my teeth (under florescent bulbs) I would get a butterfly rash… or when I’m in bed (under florescent bulbs) I would get a headache. It finally made sense. Thank you so much for posting this. It’s the first time I’ve seen it (and I try to keep up with Lupus). When I brought it up with my rheumatologist, they were very apathetic and joked about how I could ever avoid them.
Hello … I am a Lupus patient who has not had a major flare-up in at least 6 years. I’ve been a stay at home mom for the last 12 years and just recently took a job at a photography studio. I noticed a butterfly rash developing as well as the large, raised circular rashes that I had when first diagnosed. At my last Rheumatologist appointment, he mentioned the danger of fluorescent bulbs… bare bulbs. Not thinking about it, I said I hadn’t been exposed to them. The next day at work, I looked at the ceiling and noticed that the entire perimeter of the store is fluorescent light fixtures… with bare bulbs. I started wearing sunscreen to work and it has not stopped the flare-up. I’m worried I may have to quit my job because of this. It’s very discouraging.
Hello,I was diagnosed with Lupus in July 2008, 2 years after having various clinical symptoms, every time getting worse and adding new symptoms and or conditions.I Cried alot because I did not know what was going on and I was feeling so bad.I now know that i was having a flare every month or month and a half! I was a School Teacher and I got to the point that I could not stand up and/or lift my arm to write on the board!Well,recently I developed a very bad rash all over my body with many bruises. It was getting worst by day.I scratched so much that I developed scaly sores all around. Well, came out to be that I had changed all the lights in my house to fluorescent lights and that was causing the condition, The Dermatologist did a Biobsy of the skin and came out positive for LE . I was put on Prednisone(had to discontinue it) and now on Plaquenil.I too get sick when Iam around fluorescent lights! I feel an inmediate internal heat in my body, i start to sweat, have Taquicardia, shortness of breath, and like panic attacks because i feel desperate, like if something is going to happen to me, then I feel the pressure in my head, starts the headache-eyes almost shut because it converts to migrane headache! So interesting, because as soon I am out of the light I start feeling better,but I am feeling very frustrated because now the regular lights(not fluorescent)are affecting me if they are 60 watts or higher!! Could this be possible?! I would appreciate if anyone could clarify me on this one or if anyone has passed through the same.Take Care.
Hello, I just found out September, 2008 that I had lupus. I am still learning a lot about it and have been doing a lot of research trying to learn as much about it as I possibly can. My dad was in the hospital a few days ago, had to have surgery so I was up there at the hospital for 7 hours or better. By the time I got home I just felt so drained. I had absolutely no energy and just laid on the couch and finally made myself get up and go to bed. I believe it was from being in the lighting at the hospital. Although my rash didn’t flare up it just made me feel so weak. It has been hard for me adjusting to all these changes and trying to figure out what causes flares and having to take precautions even if just going out to the store. But I guess I will have to get used to it.
Ashley. Your right you have to take percautions. You have to plan and learn as much about as you can. Do all the stuff your suppose to and get used to it. But don’t stop doing things. If I am feeling week from the day before. I make sure I get my rest but the next day if I’m still feeling week I still do my exercises and stay busy. I feel better when I am doing something and when I stop I usually feel worse again, but I know I will feel better
In my last employment all the offices had florescent lighting. I wasn’t diagnosed and I couldn’t understand how very ill I felt shortly after going in. I did my best to stay out of there as much as I possibly could. Now I know why! I would get terrible migraines too.
My wife has systemic lupus.
In the last 8 mths my wife has been passing out, it lasts only 5mins and then she passes out for another 5. We have put small fluoro lights in the diding room and she will sit out there to have her coffee and read the paper. I was wondering if there could be a connection. It is very frustrating
I’ve posted a new poll dealing with this issue. Check it out and vote accordingly. This is obviously a much more common problem than I thought. I’ll check around for some additional information and post a follow-up in a couple of weeks.
@Trevor Is it like a small siezure or is a full black out? Is she aware of it? We’ve had similar problems and they were related to medication. Feel free to email me at jeff@lupusfamily.com
I just found your site (I was looking for info about fluorescents to pass to my sis) & I’m really happy to see it. I was involved with a lupus support group, and I’ve heard firsthand how hard it can be for loved ones to deal with the disease(s) also.
Jo, anonymous, PJ…I’ve had the same reaction. The way I get around it is by applying sunscreen under my clothes, wearing very thick garments, and UV protection clothing. It does help, but take breaks if you need to stay in that lighting. I will check in at the rheumatologists, then wait outside…yes, it’s better outside in the shade than in the office, lol.
Thanks again for your site, and everybody have a great day.
My wife was diagnosed with Lupus in the late 1980’s. She has always noticed that when she was exposed to fluorescent lights for any length of time, she would start to feel bad.
I now that the fluorescent lights are suppose to use less electricity (when they are left on all the time), but we have made a choice to not have any fluorescent bulbs in our house. If the law doesn’t change, in a couple years regular (non-fluorescent) light bulbs will be a thing of the past. So to plan for the future, I just purchased about 400 regular (non-fluorescent) light bulbs in various watts. While I don’t seem to be effected by fluorescent lights, I don’t want my wife to have to live in our house with fluorescent bulbs.
If you have fluorescent sensitivity, you might consider stocking up while you can still purchase them.
Jeff
My wife was diagnosed with Lupus in the late 1980’s. She has always noticed that when she was exposed to fluorescent lights for any length of time, she would start to feel bad.
I now that the fluorescent lights are suppose to use less electricity (when they are left on all the time), but we have made a choice to not have any fluorescent bulbs in our house. If the law doesn’t change, in a couple years regular (non-fluorescent) light bulbs will be a thing of the past. So to plan for the future, I just purchased about 400 regular (non-fluorescent) light bulbs in various watts. While I don’t seem to be effected by fluorescent lights, I don’t want my wife to have to live in our house with fluorescent bulbs.
If you have fluorescent sensitivity, you might consider stocking up while you can still purchase them.
Jeff
P.S. Sorry for the repost, but I forgot to include my email address on the previous post.
I just started working two weeks ago at a new office and am suffering increasing visual attacks where my eyes go strange for 20 min, followed by headeaches which last for hours and the feeling that my body is vibrating uncomfortably. I suspect it’s the fluorescent lighting. I don’t have lupus, and am in good health otherwise. However, I won’t be for much longer if I can’t do something about the lighting.
Thanks for sharing your experiences, so I don’t feel like the only one reacting to these lights. We need to make sure incandescent lighting isn’t outlawed!
Blessings, Zing
my name is John Gilmore and I work for a company that specilizes in LED lighting. We have many options from your typical tube light (same as the fluorescent tubes) to regular household bulbs. There are no UV rays, no flickering of the lights and NO Mercury.
If you would like more information, please feel free to contact me at john.gilmore@seesmartled.com
All the best.
John
I was diagnosed with skin lupus and my face turns red when exposed to indoor fluorescent lighting. I recently had surgery and my entire front torso rashed out from the surgical lighting and those are halogen. I also get migraines from fluorescent lights and my boss removed the tubes from the lights in my office at work. I now work by lamp light at my desk. I use GE Reveal 40 watt bulbs in my desk lamps.
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I have been told I have a mild case of Lupus…still going for a second opinion….but all the fluorescent lighting …The store where I work has has been made much bigger…its a liquor store….and I noticed when they finished…the lighting over the counter brothered my eyes…this has been going on for a year and half…my face gets red and I feel flushed and have to wear a light shirt even in the winter…I have had panic attacks …so I take zantax ..especially at work…there are covers over the bulbs…can this still affect my condition….I have been so upset with all this news about having lupus…this past weekend had to go to the hospital for very bad pains in my joints….I also notice that when I am on the computer …which is a lot at home…sell items on ebay…I also get the feeling of panic attacks ..that I have to outside and take deep breaths…could the computer have certain lighting that hurts your eyes and much more….anyone that can help..I would appreciate it …I will probably have to quit my job…thanks for any help….Dorothy
@Dorothy: Have you tried using sunscreen at work? I know that seems odd since you are inside, but some people have had success with that. Also, you can get glasses that you can wear while you work on the computer so that it doesn’t hurt your eyes or give you headaches.
Hope that helps.
Hi Jeff…thanks for your response…I do wear reading glasses…I have to….but the light from the screen still bothers me…..and I will try the sunscreen…thanks again…Dorothy
I have systemic lupus and never thought about possibly being affected by flourescent light bulbs until the other day. I was helping out at our church, which involved me being inside under the flourescent bulbs all day. Throughout the day I noticed that I looked red in appearance. When I got home my husband commented on how I had gotten too much sun. I was very red and rashy on all the exposed areas of my body. I also had little blistery sores in some areas. The only explanation had to be my exposure to the flourescent bulbs. This was very eye-opening for me and made me realize I need to be more careful…..even indoors.
Feeling the heat too.
Just diagnosed in Jan. suffering since about 12yrs old.
I too work for a large retailer in a very dirty manual environment. Their lighting was bad before and now they just amped up the watts on the flouresent bulbs, they also turn off and on their blower boxes on the ceiling if the tempature changes 1 degree cooler, it’s probably about 85 degrees gauging by the thermometers. I have asked for them to turn on the few ceiling fans because I, other co-workers and customers have voiced being hot.
I arrive at 5am to this disgusting light burning tropical sauna and looked trashed before 530am.
I wear sunglasses, suntan lotion, I burn, itch, sweat profusely, ache all over, am exhauted and have migrains.
I am just getting over a 5 week flare with a full blown rash from my chest to eyes. Thankfully I have had the past 7 days almost flare free. I know lupus is going to do what it wants to me while I try to fight back as hard as I can.
I know I need to go part time or find a dark office job……. lmao!
I carry around eyedrops, lipgloss and water, headband, etc. now all I need is a cure!
I CAN DREAM! :/
Thank you for sharing this valuable information about lupus.
My great-grandfather died of lupus when he was 88, and I didn’t know much about it. I never get a chance to meet him, but now I understand a little more about the disease. I’ve set up a site in memory of him, and hope that it will provide valuable information for other people that may also have lupus.
I am a 44 yr old male diagnosed in Dec 2008 with SLE. it’s been a rough road! My work in a factory has the big sodium lights and now yesterday they are going “green” and changing to flourescents, I am a little worried as to how I will react. I will be putting sun screen on, but I don’t know if that will be enough. I will be looking for some light weight UV protective clothing. Columbia makes some. I will check back for further coments. Thank you.
I had to buy a uv blocking shirt and have to wear a hat. I am going through my work to see if they will provide me with the shirts. The first day they were insatlled I got a headache and I turned red.
What kind of glasses should I wear while on the computer? Has any developed a “sunglass” to block flourescent rays?
Hi, Iv had Lupus (SLE)and Kidney disease for over 3 years now, It has been hard but Iv learnt to cope with it. I was in remission for 2 years but recently had a flare up. I only just found out about Fluorescent lights, I thought i had to stay out off the sunlight only. These lights are all around my office, does anyone know what I can do to protect myself apart from additional clothing?
Please educate the politicians about this effect of lupus. I get headaches and lupus flares from fluorescent lighting, and I cannot imagine what it will be like in my home. Please prevent the government from banning incandescent lighting in private homes and office spaces.
I just read that if you go to big box store 2hours unprotected it is like 1hour of sunshine. So slap on your hat – I did and it maded a huge differences no headache, foggy mind and exhausted. The new computer flat screens need a screen to protect you. I just changed hot kitchen spots to Philips Marathon wow my head is not going to split open anymore. Read lupus now summer2009 “Lighting the way” the first I read of incadescent(regular) and UVB leaks.Looking for UV meter or I’m going to change out bath lights tooo.
Whenever I go to “big box” stores, after five minutes, I experience extreme fatigue, dizziness, mental fog, jumpy vision, heart palpitations, nausea, feelings of faintness. Never fails. I knew it had to be the lighting. I’m awaiting diagnosis but dr. thinks I could have lupus or connective tissue disorder. Whenever I told my family/friends about this reaction to fluorescent lights they thought I was nuts. Except my one friend who has discoid lupus … she understood because it happens to her too. Glad I found a place where there are people just like me.
@helpneeded: My wife has a terrible time under that kind of lighting. As far as family and friends go, I wish I could tell you a sure-fire method to get them to understand what you are going through. My advise would be to find a lupus support group in your area and find some support there, THEN invite one of your friends or family members to attend a meeting with you. It can be a real eye opener for some.
My daughter was diagnosed with Lupus this year and was doing well all summer. Shortly after she started back at school she started flushing, turning red, sweating excessively at times, got bad headaches (which no medication helps), etc. I wonder if it is related to the fluorescent lighting… and I wonder if I have any rights in asking the school to change the lighting in her classrooms. What are your thoughts?
Beth Yes you are right. I have to watch out which teachers I can help out. The lights at the copy machine plus the flourscent or halogen over head. They can put filters tubes around. The prniciple and teachers can approve her wearing a hat (not too flashy but shield head and eyes. Have her wear sunscreen and onher face and arms. Sunglasses out on the play ground. They have really cool long sleeve shirts that you could dressup to add jazz. Protection is a way to a better life. Don’t let her sit in the sunshine by the windows either at school or untinted in car.
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 !!!
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.
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.
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.
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.
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.
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.
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.
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)
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