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View Full Version : PHOTOSENSITIVITY in LUPUS



Oluwa
07-14-2008, 08:58 AM
Abnormal light sensitivity, or "photosensitivity," is a major feature of both systemic lupus erythematosus (SLE), which can affect any organ or system of the body, and cutaneous lupus, which is mainly limited to the skin.

The two most common forms of cutaneous lupus are discoid lupus erythematosus (DLE) and subacute cutaneous lupus erythematosus (SCLE). DLE and SCLE are described in detail below.

How common is photosensitivity in lupus?

The American College of Rheumatology loosely defines photosensitivity as "a skin rash as a result of unusual reaction to sunlight." Using this definition, photosensitivity has been identified in one-half to three-fourths of people with systemic lupus.

In people with cutaneous lupus, photosensitivity affects 50 percent of those with discoid lupus and 70-90 percent of those with subacute cutaneous lupus.

How does photosensitivity show up in lupus?

1. Sunlight can cause new skin lupus lesions (sores).
2. Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.
3. Some medications increase the effects of the sun on a person's body. People with lupus taking these drugs including tetracycline antibiotics and many othersmay also very occasionally develop "phototoxic" reactions. These will lead to easy sunburning, so if you are taking these "photosensitizing" medications, you will need extra protection against sunlight. Ask your doctor or pharmacist if any of your current or new medications might make you extra-sensitive to the sun.

Why are people with lupus so photosensitive?

The science of sunlight in lupus is complex and poorly understood.

1. Several studies over the last 30 years have looked at the role of ultraviolet (UV) light in lupus.
2. UV light is invisible radiation from the sun. It has a shorter wavelength than the visible light and heat we all recognize.
3. UV is divided into UVA, UVB and UVC (which does not reach us because it is absorbed by the atmosphere).
4. In general, UVA mostly ages the skin and UVB mostly burns the skin ("A Ages, B Burns") although UVB also contributes considerably to skin aging and cancer.


1. The first rule is to stay out of the sun, especially during the middle of the day.
2. The second rule is to wear a good protective sunscreen of SPF 30 or higher. Use the sunscreen on all exposed skin areas, including the hands.
3. The third rule is to wear a hat with a broad brim.
4. The fourth rule is to wear long sleeves.

frekkuls
09-29-2008, 10:03 AM
this is what I needed to see. The sunlight has become a physical adversary for me. Part of this must be mental.....but it's gotten to the point now where I literally feel the "weight" of light. Too much exposure (and I mean minutes) makes me feel too tired to stand up....or even raise my head properly. I'm at the point where I dread going out during the day. It makes my head hurt and my eyes hurt! I feel completely weakened! Really? Is this normal or am I losing my mind?

Saysusie
10-06-2008, 12:46 AM
No, it is not in your mind. It is a physical reaction that many of us experience in the sun. Even indoors, the lights in my house will cause such aggravation that I get a horrendous headache.

Sensitivity to light is one of the most common features of Lupus and it makes us go running for darkness. So, you may join the rest of us in that area and know that you are not losing your mind. What you are experiencing is, unfortunately, very real!

Peace and Blessings
Saysusie

jaideni
10-06-2008, 08:48 PM
Does this also cause problems with your eyes? I have to wear sunglasses no matter what when outdoors especially while driving, indoor lighting causes them to throb and a headache. I was told it could be migraine related and allergies but I dont always have the migraine when I have the eye pain. Also headlights at night hurt my eyes.

Saysusie
10-07-2008, 12:08 PM
Many of us, with Lupus, suffer from Migraines and/or Lupus Headaches (much like migraines) and yes, the light affects us to the point where we must wear sunglasses ALL OF THE TIME! I keep at least 4-5 pair in each of my cars (depending upon the severity of my headache, I have to switch between different types of sunglasses). So, here again, what you are experiencing is quite normal for us. :lol:

Peace and Blessings
Saysusie

sweetpea630
10-10-2008, 09:22 AM
I am so glad i read this today. I feel so much better knowing I'm not the only one having issues with my eyes. I've had migraines for years, but since being diagnosed with lupus, I ALWAYS need sunglasses, even on cloudy days.

paula C
01-18-2009, 06:06 AM
Hi,

Although I have been diagnosed with Lupus for about 7 years, this is the first summer the sun has really affected me. Causing Extreme migraines and all over rashes, nausea and vomiting etc.

Yes, sun glasses and a wide brim hat seem to help even on the cloudiest of days.

Cheers

PaulaC

lilmisssunshine
02-01-2009, 07:27 PM
i am so happy to read this....my daughter's latest issue is major light sensitivity. she's wearing her sunglasses in her 2nd grade class at school! thank goodness for wonderful teachers. we've been to the eye doctor's, who thankfully gave us the all clear in terms of more serious eye issues. honestly, just happy to know we're not alone!

lucky7
02-03-2009, 03:46 PM
Wow, im happy i read this one too!

I went to Florida to visit my inlaws and i was inthe sun with my daughter and when we got back to the house i flared so bad that i was done for the rest of the day! I almost threw up on the way back to the house and i got so tired i thought i was going to fall over.

Light hurts my eyes so much these days too. I have trouble watching tv sometimes, it will kick in a migraine sometimes.

My kids are having a hard time when i flare up,they're not used to mom being "out-of-it" so much. I'm the caretaker of so many of my friends and family that now their having a hard time understanding me not doing everything i've always done.

I feel sad at times because of this. I'm also finding out that i really dont have TRUE FRIENDS. That hurts but i do try to be upbeat,I LOVE my animals thats for sure! They're there no matter what! LOL

Actually my husband even kicked it up a notch in the taking care of the kids,house etc.!

Out of something bad comes something good! Right? WOO HOO for that! LOL

Saysusie
02-05-2009, 08:48 AM
Absolutely :lol:

tatiana
02-11-2009, 05:34 PM
I recently moved to NY from FL and the relief from the sun was immediate! However, as the seasons change and we enter the spring, it's all going to come back! Just today I have been feeling lousy (the last three days really), and its because i got some sun. I have big sunglasses, the kind that fit over my eye glasses and cover all sides, and they are my savior. I used to have to wear them indoors from time to time, the sensitivity is that bad. Especially around fluorescent lights. Has this been tested somewhere, i was never sure if it was just me being crazy.

Good to be back to the forum!

Saysusie
02-12-2009, 11:01 AM
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

Danica01
02-12-2009, 12:25 PM
And that is why I am getting a fish and naming him Rupert!



Wow, im happy i read this one too!

I went to Florida to visit my inlaws and i was inthe sun with my daughter and when we got back to the house i flared so bad that i was done for the rest of the day! I almost threw up on the way back to the house and i got so tired i thought i was going to fall over.

Light hurts my eyes so much these days too. I have trouble watching tv sometimes, it will kick in a migraine sometimes.

My kids are having a hard time when i flare up,they're not used to mom being "out-of-it" so much. I'm the caretaker of so many of my friends and family that now their having a hard time understanding me not doing everything i've always done.

I feel sad at times because of this. I'm also finding out that i really dont have TRUE FRIENDS. That hurts but i do try to be upbeat,I LOVE my animals thats for sure! They're there no matter what! LOL

Actually my husband even kicked it up a notch in the taking care of the kids,house etc.!

Out of something bad comes something good! Right? WOO HOO for that! LOL

Oluwa
02-12-2009, 03:06 PM
I am happy this Sticky has been informative..

Others things to consider when photosensitive to protect yourself...

1. Minimize outdoor activities between the peak hours of 10:00 am and 4:00 pm or adjust to your area.
2. Avoid reflective surfaces such as sand, snow, and concrete
3. Wear clothing to block UV rays.
Try...Rit Sun Guard Laundry Treatment UV Protectant
4. Use “waterproof” sun-protective agents such as sun blocks or sunscreens
5. Install low wattage overhead lights.
6. Use task lighting
7. Replace fluorescent lighting with full spectrum or natural lighting
8. Eliminate blinking and flickering lights
9. Install adjustable window blinds and light filters
10. Limit time on computer. Monitors can bring about photosensitive symptoms.

AyahsClan
02-21-2009, 08:26 PM
Oh no! Say it aint so! Not my monitor!

I have had lupoid sun sensitivity for over 20 years. If I go out in the sun I will get nasty pustules on my face within a few hours to a day along with a flare of some sort. What helps me the most is the special UV protection clothing. Only problem is it is so expensive. I have two hoody ilght sun jackets, one from Solumbra and one from Coolibar. I wear the hoodie or a scarf under my very wide brimmed hat. Then I slather sun screen on my hands and face. I make sure I take vitamin D too.

Lucky7, I'd surely die of neglect without my animals. I lost my horses and chickens due to lupus, but I have 4 great dogs and a parrot that thinks I am awesome lol

tiggerlishus - Heidi
02-27-2009, 05:09 AM
I two have heard about monitors causing problems apparently you can get acsreen to go over thme not that i have yet got one myself!! adn don't know how i would live with out my laptop!!
and as far as sunny florida i lived there for years returning to engalnd the last time in 1989 and never remembered having a problem then but i since been back on holidays i have noticed a huge difference i can only go certain parts of year! i went last year in begining of september and found it the hardest thing ever swelling up like a ballon extreme fatigue if i was actually out in the sun it was like i could feel my blood boiling with in minutes i went out with my now ex for my birthday and he just couldn't understand my limitations and soon after we split, but then i went out december for my first xmas there in 20 years! to be with my step mum in our second xmas with out me dad and i soo noticed the difference thou i still swelled it wasn't half as bad! my fatigue was trying to do to much rather than just being there and the blood tingling didn't happen at all and i agree always get at least 30 i normally go for 40-45 sun factor and with that extra uv protection!! and kaftan style tops and hats where possible!
i have noticed thou with our snow flurry we had recently that snow starkness hurts my eyes and some shops with thier blairing lightage!! and you look like rodney going round the shops with them on but if it stop headaches and eyes aches its worth it!! ok gone stop rambling now!!

ssingh
03-15-2009, 10:14 AM
I have not been feeling very good for whole last year and I noticed that my face get much more red in any light and hot temp. It is only started when I started to feel bad last year. I photosensitivty gets worse when your lupus in not in check???????

AyahsClan
03-15-2009, 07:56 PM
I have not been feeling very good for whole last year and I noticed that my face get much more red in any light and hot temp. It is only started when I started to feel bad last year. I photosensitivty gets worse when your lupus in not in check???????

For some it may be like; which came first, the chicken or the egg. When I get overheated which for me is 74 degrees +, my face will get worse and can effect my entire body, but it usually doesn't. My fatigue might get worse for a few days but nothing serious. If I get a virus or am run down, the lupus flares, the face gets worse whether I have been exposed to heat/sun or not.

For me the severity of the rash progressed over the years and instead of being in control or out of control, I became more sensitive to sun and heat. In other words, if I get overheated and my face shows it, that does not mean my lupus is any worse. It just means that I should not have exposed myself to the heat/sun. If I were to continue being exposed to heat/sun, It probably would trigger a flare.

IMHO, I would say, if you have been diagnosed with lupus or other related auto-immune issues, this may be your body telling you to avoid heat/sun. It doesn't have to mean your lupus is worse, it may just mean your body is growing more sensitive. I thought of it as being allergic to the sun/heat. My sun allergy gets worse the older I get. My lupus hasn't really changed for quite some time, but it is important to communicate every change with our Rhuemies.

ssingh
03-15-2009, 09:09 PM
Thanks so very much, then it is more like sensetivities are getting worse rather than lupus not as much

Bonita
03-30-2009, 03:50 PM
i AM GLAD I READ THIS I ALSO HAVE BEEN HAVING TROBLE WITH THE SUN AND MY EYES. ALSO HEADACHES FOR ABOUT TWO MONTHS NOW. THANK YOU bONITA:wacko:

wrightrs
03-31-2009, 10:10 AM
Can any body tell what brands of sunscreen are best for lupus!!! I know I shoud'nt but I swim a lot in the summer!!!!:wacko:

mountaindreamer
03-31-2009, 10:43 AM
hi wrightrs,

there is a "sticky" that goes into detail about sun blocks. the important thing to remember is to get sun block not sun screen.

i try to buy 50 spf, but at the minimum, get spf 35.

i grew up not using sun screen at all, so this has really been an adjustment for me....hope you are better at this prevention than i am.

Oluwa
03-31-2009, 11:40 AM
Wrightrs...

Swimming is a wonderful exercise for Lupus, our joint paint..helps to strengthen our skeletal muscles that hold us up and also to protect our joints. Don't give it up, just protect.

I only swim in the summer...and I feel so alive then.

If able swim before the hottest part, sun highest in your area....usually between 10AM - 4PM, so swim before 10 and after 4PM. I have a pool and follow that rule.

I also swim with a T-shirt and I use and my most recent purchase was Neutrogena Ultra-Sheer Dry-Touch Sunblock SPF 55...

Love,
Oluwa

Oluwa
03-31-2009, 11:41 AM
FYI....regarding screens and blocks and how to protect yourself...


Sunscreen contains materials that act as filter to allow a certain range of UV light to be absorbed into the skin.
Sunblock contains metallic materials that reflect and scatter the UV light and acts a wall between the sun and your skin.


The sun is at its strongest between the hours 10 a.m. and 4 p.m. This is when sun protection should be strongly advised. When buying a sunscreen or block look for:


Sun protection factor (SPF), which is labeled on every bottle. The SPF number indicates the length of time one can stay in the sun without burning. The higher the SPF number the more your skin is protected from the sun. Dermatologists recommend using lotion with an SPF of 15 or higher.
Active ingredients are what prevent UVA and UVB rays from harming your skin. Sunscreens or blocks should contain protection for both UVA and UVB rays. According the Food and Drug Administration, effective sunscreens and blocks should contain one or more of the following ingredients:

For Sunscreens
· Octinoxate
· Octisalate
· Oxybenzone
· Benzophenone
· Menthyl Anthranitate
For Sunblocks
· Titanium Dioxide
· Iron Oxide
· Zinc Oxide

An Expiration date should also be printed somewhere on the bottle. Sunscreens without an expiration date listed usually have a shelf life of three years.

Sunscreen/block should be applied about 15 to 30 minutes before going outside and reapplied every two hours, even on a cloudy day. Even if your lotion is waterproof, sunscreen/block should be reapplied after swimming and physical activity where excessive sweating has occurred. Lotion should be applied to any area of the body that will be exposed to the sun. Don't forget your lips, ears and behind the neck. Have someone help you with the hard-to-reach spots like the middle of your back.

ssingh
03-31-2009, 02:36 PM
WOW! I did not know you have to apply every 2-4 hours. Are u sure? my doctor never said that. I only apply once a day. thanks

Oluwa
03-31-2009, 11:31 PM
Yep, like make-up , lotion, lipstick, cologne...it wears off, sweats off too....you're welcome, SSingh.

tonyk
04-10-2009, 04:15 PM
I'm still trying to figure this out, without putting myself in the hospital. I know I have big problems when I don't wear sunglasses. When I do put sunglasses on after the initial symptoms, it relieves symptoms. So is there a type of Lupus thats just "through the eyes" and not absorbed through the skin? Is anyone aware of any other sunlight induced "diseases"? Also can this elevate blood pressure/anxiety? Can you die if you can't get out of the light? Thanks.

Angel Oliver
04-10-2009, 04:26 PM
Hi Tony,

Have you read page one of this thread? It could help you!

Love
Angel.xxx

ssingh
04-17-2009, 06:58 PM
well, I am having this issue that even little bit in sun and florescent light my cheeks and nose tip gets really red. It just started to happen from last year. I have lupus for now about 10 years never happened that before. Does it means lupus is kind of active? May be I am in some kind of flare. I have not felt good all year.

wrightrs
04-17-2009, 11:30 PM
Thanks for all this sun info just reading it again to get ready for the pool. But I was wondering if your in the sun how long it takes for you to feel the effects? I was wondering if the flare, I'm having now is from me getting in the sun last summer.

lucky7
04-18-2009, 11:53 AM
Hi Ssingh, i wanted to say that ironically enough i was talking to my neighbor the other day and i didnt have my sunglasses on and OMG, my eyes got worse than usual and my symptoms flared BAD. I feel pretty bad right now still too. Its lingering worse than ever. The only thing i did different about being outside in the sun were my lack of glasses. This is the first time my flare from the sun is THIS BAD. Ive flared before but NOT LIKE THIS. I feel like im fading away cuz its SO BAD. I thought i had some pretty bad flares but this TOPS them ALL and its kind of freaking me out.

ashleybaby715
04-18-2009, 12:57 PM
awh jeannette, i hope that evil flare goes away SOOOOOON!!!!

ashleybaby715
04-18-2009, 12:58 PM
heyy. i just want to add to this thread, that not everyone with lupus is affected with the sunlight. although most are. i don't really have issues with the sun. the only thing is that if i am inside for a while, and go out where it is REALLY bright. i might get a slight headache. but other then that, i am perfectly fine in the sun. i actually was out all day today and nothing happened, thank goodness!

ssingh
04-18-2009, 01:41 PM
I use to be just fine in sun for years with lupus. but it started last year after a flare. I get red indoor when it gets hot and sunlight is coming through windows/.
My VIEW is this it depends how is your lupus overall, how I behave in SUN.

lucky7
04-18-2009, 02:00 PM
Thank you ashley! How sweet of you:cute:

Yeah, i didnt have issues with the sun before either till last yr, but this yr is worse by far. Ive been flareing nonstop for a while now so i think you're right about where our Lupus is at at the moment. I get very RED too, evne from it coming in the windows as well. UGH Im red now as a matter of fact. the sun was coming in my porch window and BAM, now im worse. Oh well, im going to go rest soon.

RedHairAngel
04-20-2009, 10:43 AM
yesterday we got to 80 degrees , I put last years sun screen on and went and trimed my roses up I was only in the sun 15-20 and poof I have a rash every where my skin was exposed except my face which I used a mineral make with a natraul sunscreen in it!

So my advice to you if you have old sun screen it may not work this year! Buy fresh new stuff! Who new it would stop working --- Debbi

frekkuls
04-23-2009, 05:42 PM
Two quick things. One, has everybody seen that Nuetragena just came out with a new 100+ sunblock? I just got some to try.
And two, has anyone invested in the special clothes they sell with UV protection built in??
I've looked at some online, but I'm a little hestitant with the price that they really work better than regular fabric clothes. If anyone has any knowledge it's appreciated!! Thanks!

Niki
04-24-2009, 07:17 AM
I have had symptoms from Lupus for over 10yrs. This spring I noticed my eyes hurt, my skin felt like it was burning, and I get physically sick anytime I go out in the sun. I had never had problems in the sun or heat till now. I have been on Methotrexate for over a year now and feel that is what has exacerbating the sensitivity, along with the Lithium I take for my bi-polarism.

If I have learned anything, its that I take everything in stride and roll with the punches, because living with Lupus is never dull. Lupus is a challenge and I have never backed away from a challenge, and I don't plan on starting to anytime soon.

Niki :laugh:

Spanglishqueen
08-15-2009, 01:38 PM
Yup my sun photosensitivity just kicked in last week and I'm miserable. When I take the dogs to go out even for 10 minutes I'm done...full blown fatigue, nausea, headache :sad2: Just curious if the heat or humidity make a differenece or just the sun itself. We've had a non-existent summer until last week and it's been getting into the mid to high 80's and 7-15% humidity.

ElyMiller000
08-31-2009, 02:32 PM
I don't know if anyone here has answered this cause to be honest, I didn't bother looking (sorry!) But...could anyone let me know this...How much exposure is too much? For example, I was feeling fine and I went outside to get my mail and talk to my sister- last less than 5 minutes and when I went back in, I felt kind of fatigued. Was that from that brief moment in the sun? I don't get rashes (not really anyhow) and so I often dismiss the sun as not being harmful...is this something I should really put more focus on?

lucky7
09-01-2009, 04:18 PM
Oh Spanglishqueen, YOU sound just like ME when i am in the sun!!! Those are the EXACT symptoms i GET too!! I can Get SO ILL feeling and there are times that it literally "knocks me out" for an hour or 2. I literally CANT open my eyes from how TIRED i can get from the sun. The NAUSEA is AWFUL!!! I throw up sometimes! EWWWWY!!!:7:LOL

I SOMETIMES can flare IMEDIATELY as soon as i walk out the door. Even in the shade. I noticed for ME, the WORST i get "hit" is in the late morn through the mid afternoon,the peak "sun rays" time. I ALSO get HIT harder IF i am NOT wearing my sunglasses. ANY sun THROUGH my eyes makes it get into my system that MUCH QUICKER. UGH YOU have to pay attention to YOUR reactions, what time it is and if you have glasses on or not to figure out if there is a pattern you SHOULD avoid with the sun. SOmeitmes my symptoms arent AS BAD as others. This disease DOES what IT wants WHEN IT wants. :wacko:

elleinod
09-08-2009, 07:17 PM
If I am in the sun for any period of time I pay for it. I have immediate symptomes and I feel like I was scrapped off of the sidewalk for the whole next day. This is the lupus symptom that I am most indignant about, so I am always researching any way around it.

Here are some solutions I found...

The cost of the sun protection clothing has stopped me from buying it for the most part. I did buy some basics from the Lands End Sun Life line, which offers UPF (Ultraviolet Protection Factor) 30-50 depending on what you pick. Here is a link:

http://www.landsend.com/cd/landing/0,,newCoidInd=y:storeNum=1:navColor=1:tabs1Sel=n:t abs2Sel=n:tabs2StructNum=79159:midNavDisp=n,00.htm l


There is also a Rit Fabric Treatment that lets you make your own clothes sun protectant. They sell it on Amazon:
http://www.amazon.com/Rit-Laundry-Treatment-Powder-Guard/dp/B001E5MWO2/ref=sr_1_1?ie=UTF8&s=hpc&qid=1252461941&sr=8-1

I haven't tried it yet, but I intend to!

Hope it helps

Spanglishqueen
09-09-2009, 07:04 AM
Thanks Lucky and Elle :grouphug: I checked out the website and I may invest in pants but I don't think I'll do long sleeves in the summer not yet :cute:

lucky7
09-10-2009, 02:16 PM
Yeah Spaglishqueen, long sleeves and summer DONT MIX!!! HOT HOT HOT!!!!!!! IM so dang HOT all of the time anymore even in short sleeves!:wacko: Screw the long sleeves!!! iD SAY SCREW THE LONG PANTS AS WELL, but, my bruised legs arent very attractive these days so i just have to sweat in those! UGH

Serenity81
12-11-2009, 10:35 AM
This makes me feel less "crazy" too...

And as I begin to look at things in a broad scope, I start to wonder if it's not all interconnected afterall.

I've always had eye issues (I was born 3 months early and have Retinopathy of Prematurity).. I never had many issues with sunlight unless I'd recently had my eyes dilated - granted, that was quite often as a child, but I could always attribute it to that.. As I've gotten older, I'd say around 2004 - age 23 (in retrospect, this is probably when my Lupus reared it's ugly head for the first time), I began needing my Rx sunglasses ALL the time!! I didn't think much of it and wrote it off as my eye issues just making them more sensitive.

Now, the past couple of years, my husband and I have vacationed in Florida with his family in the summertime. The first day or two, we're usually at the beach non-stop! I love warmer climates because it's a nice change sometimes from Michigan which is typically cooler and I have issues with Reynaud's so my hands and feet always feel cold! However, these past 2 summers, by the 3rd or 4th day down in FL, I would have to spend an entire day or more re-cooping in the condo because I flared up so badly! My mother in law even jokingly asked if I was pregnant last year because I'd gotten sick two mornings in a row (days 3 & 4) and immediately went back to bed until almost 11am both days.. followed by subsequent naps after lunch.

Looking back on all of this now, we see it for what it truly was.. It's amazing how much of our suffering we try to pass off as other things or us just being overreactive or overly sensitive.. and then we get our Dx, and it's still difficult to allow the Dx to account for these things.. I still find myself sometimes thinking it's all in my head. I get frustrated if I can't do simple things because I "used to be able to."

Sorry for the ramble.. I just had a bit of an "Aha" moment after reading what you all had said. :yes:

Saysusie
12-12-2009, 02:04 PM
NP;
Most of us have also had those "aha" moments after we received our diagnosis and realized that many things that happened to us, years earlier, was probably symptoms of Lupus. So, you are not alone!

Peace and Blessings
Namaste
Saysusie

wrightrs
01-24-2010, 02:37 PM
I think the sun coming in my bed room window is causing my rashes. The blinds are not closing good. And since I'm not sleeping at night but during the day, i'm getting to much sun though that window. I brought some new blinds but haven't put them up yet. I also need to try to sleep at night.

Saysusie
01-25-2010, 02:06 PM
Wrights, You could be right! My husband put window tints in all of our cars due to my Lupus. But, one summer, we took a road trip to Arizona and rented a van. By the time we got to Arizona, I was so sick that I was bedridden for three days of our vacation. It finally occurred to us that I was exposed to the sun through those windows for 10 solid hours! We vowed to never, ever make that mistake again!!

Peace and Blessings
Namaste
Saysusie

Melly
02-01-2010, 05:05 PM
Wow, you guys! I joined this site so I could learn more about Lupus and I knew sun sensitivity was an issue, but didn't realize how bad it was. Thank you, everyone, for sharing your experiences. I hope one day they are able to find a cure so you can all enjoy the sun once more. *gentle hugs*

wrightrs
02-02-2010, 02:11 PM
Saysusie so sorry about you trip. It so bad we the flares come away from home. I got some better sun screen It's not greasy like some. I hope it helps. It was "Neutrogena Ultra Sheer" and next to it in target they had the Target brand of the same thing. It cost a good bid less. I bought both to try. My new blinds are room darkening. I think that will help. If not I will put insulated drapes over them.

melly c
02-20-2010, 05:14 PM
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

tgal
02-21-2010, 12:16 PM
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.

mabeljane
02-21-2010, 12:28 PM
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

tgal
02-21-2010, 05:10 PM
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

melly c
04-06-2010, 05:25 AM
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

teresaa40
04-23-2010, 03:12 PM
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?

klmkelly
07-23-2010, 03:31 PM
Saysusie,

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

Saysusie
07-24-2010, 09:55 AM
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!!!

Peace and Blessings
Namaste
Saysusie

Linda From Australia
07-25-2010, 05:43 AM
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.

jmail
07-25-2010, 08:39 AM
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

Peridot_Gem
10-02-2010, 03:37 PM
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

Saysusie
10-04-2010, 08:05 PM
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 :-(

Peace and Blessings
Namaste
Saysusie

Peridot_Gem
10-05-2010, 08:25 AM
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 :-(

Peace and Blessings
Namaste
SaysusieTans 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

Rosi
10-13-2010, 02:21 PM
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

tgal
10-13-2010, 04:56 PM
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!

lovedbyHim
05-29-2011, 03:26 AM
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.

Peridot20_Gem
06-13-2011, 11:15 AM
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.

GeoKasher
07-14-2011, 05:14 PM
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!

tgal
07-14-2011, 07:52 PM
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?

GeoKasher
07-15-2011, 02:40 AM
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.

Manderson
07-16-2011, 04:20 PM
I too had OMIGOD moment earlier this week. I notice that the red rashes on my hands happen mainly at work. I wear a long sleeve lab coat so all that really shows are my hands so it HAS to be the florescent lighting. The makeup I wear has a sunscreen built in but there are times when my face turns red as well.

Also one of the grocery stores we shop at has really strong florescent lights (a warehouse type store) and the last couple of times H and I have been there, I have felt ill. Fine before walking in and then fine leaving.

Who knew?

GeoKasher
07-16-2011, 04:48 PM
I have a feeling I'm going to have a lot of these moments as even more things that I've just learned to live with start to make sense!

Manderson
07-16-2011, 08:34 PM
Me and you both Geo

ButterflyRN
07-19-2011, 05:12 PM
I have always been photosensitive since I was diagnosed. I am especially sensitive now that I am on an immunosuppressant (prograf) that increases my sun sensitivity. I make sure to wear sunscreen or a lotion with sunscreen everyday and always have my had and or spf umbrella with me.

If your state allows it a suggest a handicap placard as well. I have it for not only the sun but also the times I have trouble walking due to joint pain! It works out great.

Also I just got my windows tinted in my car! Huge thing!! My state allows me to block out 70% of the light on my side and back window and block 35% light from my whole windshield! So I am blocking 99.5% of those harmful UV rays that send me into a flare!

I am currently fighting a slight hiccup with my lupus and trying all that I can to keep it from going into a full flare!

Good luck to everyone and staying healthy!

YollyDolly
09-12-2011, 09:20 AM
I was really sensitive and Burnt easily and was effected long after being sun burnt way before I was diagnosed with Lupus but now I am thinking it may be that having had Lupus imam guessing forever but not knowing about it then may also have been part of why I was s sensitive. Then again some people are just sun sensitive but I know and feel bad how much I need to cover up more and if the consequences aren't instant don't always link my pain to the sun which is bad because then I don't think to cover up next time and I am worried about complications later on from being exposed to the suntoo much etc. Thanks guys!

tgal
09-12-2011, 10:27 AM
I was really sensitive and Burnt easily and was effected long after being sun burnt way before I was diagnosed with Lupus but now I am thinking it may be that having had Lupus imam guessing forever but not knowing about it then may also have been part of why I was s sensitive. Then again some people are just sun sensitive but I know and feel bad how much I need to cover up more and if the consequences aren't instant don't always link my pain to the sun which is bad because then I don't think to cover up next time and I am worried about complications later on from being exposed to the suntoo much etc. Thanks guys!

Just an FYI...for many of us we have just as much trouble in florescent lighting. I have to wear 50+ (I even have 100) sunscreen when I am in the store shopping or in a doctors office. In the ER I get even sicker so the sunscreen goes on before I get there. Some people get rashes from it but many just get hit with a flare. Good thing is that sunscreen stops it

debstar
09-12-2011, 02:55 PM
Yolly - Goodmorning :-)
You are also blond and very light skinned = easily sunburned! Try not to 'blame' everything on Lupus now that it has been diagnosed, it will only make it harder on yourself to accept it and deal with it. You have always been sensitive to the sun due to your fairness, and you still would be without Lupus. xoxo

Shine
09-14-2011, 10:12 PM
This will totaly explain why my arms go bright red with white lumps on when I'm working under flouro light! And then why I feel like shit the next day. Roll on rheumo appointment!

Derek
09-25-2011, 06:24 AM
This is such good information, I am really going to learn alot about lupus, thanks heaps for the info

tgal
09-25-2011, 08:52 AM
This is such good information, I am really going to learn alot about lupus, thanks heaps for the info

There are just so many "little things" that make a huge difference in our lives

Desleywr
10-01-2011, 11:56 PM
Yolly - Goodmorning :-)
You are also blond and very light skinned = easily sunburned! Try not to 'blame' everything on Lupus now that it has been diagnosed, it will only make it harder on yourself to accept it and deal with it. You have always been sensitive to the sun due to your fairness, and you still would be without Lupus. xoxo
Yolly you are very very fair and sunburn would be very easy. Also being early diag often we all go through looking back and picking up on little things that may be associated with Lupus great to be aware but be very careful not to spend too much time looking back - my thoughts are if I spend half the energy looking forward then I can try and prepare for each day so that I can get the most of each day as I can eg. Planing out my rest time allows me to get a lot more done and satisfaction increases. Also with the photosensitive issue if I am not wrong it is not just sunburn but also the exhaustion from the sun uv lights. When I sit under a flurolightifeel like superman who has just sat near kriptinite. As Prof Fiona Wood who was the Australian of the year says "only mix with positive people if you want to get a job done!" great advice from Debs!

SuzyB
01-19-2012, 11:18 AM
Last year whilst in Tunisia for a holiday I came out in what I can only describe as little blisters in one patch around my neck and on my shoulder on one side. I also felt extremely tired. I spoke to my GP on my return he said it sounded like shingles (no nerve pain) I'm now wondering if it was my lupus. I haven't been anywhere that sunny since so I guess I'll have to wait till the next holiday to find out

Mica
01-19-2012, 01:53 PM
Wow, im happy i read this one too!

I went to Florida to visit my inlaws and i was inthe sun with my daughter and when we got back to the house i flared so bad that i was done for the rest of the day! I almost threw up on the way back to the house and i got so tired i thought i was going to fall over.

Light hurts my eyes so much these days too. I have trouble watching tv sometimes, it will kick in a migraine sometimes.



My kids are having a hard time when i flare up,they're not used to mom being "out-of-it" so much. I'm the caretaker of so many of my friends and family that now their having a hard time understanding me not doing everything i've always done.

I feel sad at times because of this. I'm also finding out that i really dont have TRUE FRIENDS. That hurts but i do try to be upbeat,I LOVE my animals thats for sure! They're there no matter what! LOL

Actually my husband even kicked it up a notch in the taking care of the kids,house etc.!

Out of something bad comes something good! Right? WOO HOO for that! LOL


I have the same problem with my eyes too I always wear sunglasses outside and have blacked out my bedroom windows, I know with the true friends thing kind of hurts did me too. It's hard for people to understand, it took me a while to accept that but at least I have my family and my cat. I actually got my cat, Hunter, like a month before I first got sick and he really helped me get through the bad times when my friends and some of my family didn't.

Tefy06
03-08-2012, 07:31 PM
That explains the migraines!! I spent 6 years of my life thinking that I had arthritis, I used to have episodes of migraine but I always thought it was just stress, It all makes sense now, unfortunately It's quite hard for me avoid sun because I live In a tropical place, so I have to learn to deal with it. =/

tgal
03-08-2012, 07:53 PM
That explains the migraines!! I spent 6 years of my life thinking that I had arthritis, I used to have episodes of migraine but I always thought it was just stress, It all makes sense now, unfortunately It's quite hard for me avoid sun because I live In a tropical place, so I have to learn to deal with it. =/

I live in Texas so I understand having to learn to deal with it. That doesn't mean that you have to keep getting sick. They make sunscreens now that are 50 and over (I wear 75 on my body and 100 on my face). When I am going to be outside I wear UV protective clothing and hats. I may not be the prettiest girl in Texas but I would rather have it this way than to make my flares worse each time I go outside

Ellie Hansen
03-12-2012, 05:23 AM
My cousin has sle and she goes tanning...I remember she wanted me to go tanning with her before her wedding last summer (this was before I got diagnosed), and I got really badly burned. Why is it that some SLE people are able to go tanning while others, (like me), need to really watch it in the sun?

A. G. Moore
03-14-2012, 10:58 AM
Hi-Great thread. I would like to add that research done at the University of Pennsylvania Medical School by Dr. Virginia Werth has discovered a genetic basis for lupus photosensitivity. She believes that research in this area may give insight into what triggers the development of lupus.

Marine wife
04-01-2012, 03:56 PM
I have a question. I don't know if this is because of the sun or if is just coincidence or who knows maybe its my imagination. After I have been in the sun for even just a 15 minutes or so, I my arms and face start to itch. Has anyone else experienced this?

tgal
04-01-2012, 05:22 PM
I have a question. I don't know if this is because of the sun or if is just coincidence or who knows maybe its my imagination. After I have been in the sun for even just a 15 minutes or so, I my arms and face start to itch. Has anyone else experienced this?

The sun does some horrible things to many of us. I get the itching but I also usually flare. As an example I was taken to the ER last week after mowing the grass. I know better to go outside without at least 75 UV sunblock (I use 100 on my face), long sleeves and a hat.

So the short answer is yes... i do start to itch if I haven't taken precautions.

n.mac
04-01-2012, 06:37 PM
Me too! I get severe reactions to minimal sun exposure(better now that I have been on plaquenol for 11/2 yrs)

I get itchy and rashes all over not just where the sun hits-I rarely go out without long sleeves and sunscreen.

Tracyl50
05-24-2012, 06:59 PM
I get chronic fatigue if i stay out in the sun to long. i do not get a rash, at least not yet.

LindaJ
08-03-2012, 09:28 PM
My eyes never used to be bothered by the sun, but the past two years, the glare of the sun bothers them alot. I wear suglasses always when I'm outside.
The sun also triggers 'eye migrains' for me sometimes. Do you have blue eyes? Blue eyed people are also more likely to develop macular degeneration when they get older.... I read this. It's the Ultra violet rays that hurts the retina. I don't remember reading which of the UV rays. I have had Lupus a long time. I have had the beginnings of macular degeneration for a long time, but fortunately, it is progressing very slowly. Perhaps staying out of the sun so much during my life helped! So, with Lupus and blue eyes.....sun is something to avoid!!

Deemarie1223
08-25-2012, 11:45 AM
Does photosensitivity always give you rashes? Or can it just cause headaches and drain the life out of you? This is yet another symptom dating very far back that I've had problems with. I just always assumed it was fair skin and freckles:/ my eyes hurt too from the sun, and lights in my house, causing headaches. The only place that gets rashy is my face and sometimes neck /chest and it usually only lasts a few hrs, but even out in the sun for 5 mins my face turns bright red! just curious:) thanks!

LindaJ
08-25-2012, 03:58 PM
I have only just begun to get large freckle spots on my arm from the sun. I don't get rashes though. It sounds like you are photo sensitive since you say you have been getting rashes from far back. Do you have discoid Lupus or SLE? I've had SLE for 47 years. At the time I was diagnosed, I was told to stay out of the sun because it caused Lupus flairs. Actually, after 20 years I slowly began going into the sun. For me it didn't bring on Lupus, but by then it was discovered not everyone was so sensitive to the sun. With your rashes coming like that, I'd be careful. What does your doctor say?

Deemarie1223
08-25-2012, 05:49 PM
I'm not dx'd yet. They did a skin biopsy cuz I have livido reticularis on my greats, stomach and thighs but the results were normal. I am dx'd with an array of things but not put into on lump sum. I've seen pics of peoples skin after sun exposure and ihne doesn't get like that. It's mote like I looked burned but I'm not, it lasts for a few hrs then it goes away. However, for as far back as I can remember, the sun has always wiped me out. If I'm in it directly for more then 20 mins, I'm tired, weak and dizzy, as I mentioned, I chalked it up to my complexion. I'm going to a new rheumy and neuro sept 19th nd I'm praying for a dx. It's been far too long. I need to be treated for what's reeking havoc on my body:/

LindaJ
09-07-2012, 08:03 PM
Hello. I can imagine that gong without a diagnosis can be so frustrating. You said youhave livido retcularis.... I have never heard of that. (actually, on this site I am hearing about so many conditions I've never heard of!). You said it lasts for a few hours before it goes away....I'm not a doctor, but at least that doesn't sound systemic to me. Hope you find out the answer when you go to your new docs on the 19th. Keep us informed !

theLword
09-11-2012, 11:05 AM
Hi DeeMarie,

I read your post asking about rashes from the sun. I can only speak from personal experience, so I'm not sure what the medical response to your question would be. But, I have fair skin and red hair, I always thought of myself to be sensitive to the sun, etc. I was diagnosed with Lupus this past April, so this was my first summer diagnosed. I tried my hardest to stay out of the sun and I would say in general that I did a pretty good job. There was one day that I went to the beach with some friends. I lathered on the sun block, but it didn't seem to be enough. I got a horrible headache and felt like I was overheating. I used to get heat rashes frequently, but I've never had the typical butterfly rash. As others have also mentioned, I have an eye sentitivity to the sun and have a very difficult time being outside (especially driving) without sun glasses on. I don't know if this is directly related to Lupus or not, but as the most of us.. I love blaming everything on Lupus! haa :)

Hope this was at least a little helpful.. at the least know that others are experiencing the same!

Oh, and sorry for my spelling, my spell check doesn't work on this computer and no time to edit!

Roger
09-16-2012, 05:50 PM
How much sun is too much? With protection and without? Can I get by without protection early in the day with the UV index below 2? Any idea if trees( both leaf and conifer) block the UV? Just trying to figure out what I can live with, and what I can't! And it is ok if you don't know! I just keep looking for answers and keep asking questions! Thanks! Roger

jmail
09-16-2012, 06:19 PM
Each person is different, each person at different times/conditions is different, and medications can make a difference, in both ways, for sensitivity. In other words, it varies greatly. For me, it's best if I avoid direct sunlight when ever possible. It looks weird, but I wear a long-sleeve shirt and broad-brim hat to the beach (which I seldom do), and slather on the high-spf (50+) sun screen. Some folks are even susceptible to indirect sunlight. What can really be vexing is the flourescent lighting, since some places use "good" bulbs, some places use "filters", and some place just use whatever, which can make it tough to plan for a visit to the store. "Experimentation" is the name of the game.

Roger
09-16-2012, 06:35 PM
Jmail
Any idea what distance is a safe distance for the flourescent lights? I have them in my shop with 4 about 12 feet from the floor and 2 about 8! I am at a stage where things seem to be changing rapidly! I am just trying to decide if it is all due to the UV or if it is some other cause! These fillet knives in the ribs are no fun! Over the last two weeks it has been harder to pin it on UV, although back in May, we were sure the sun was the trigger once we learned about it! I have only been on the Imuran for about a month, and am not sure yet what that may or may not be having to do with it! Thanks for the responses! It all ads to the puzzle solution! Roger

jmail
09-16-2012, 06:47 PM
It'd be nice, wouldn't it, if there was a formula you could just plug data into, and get an answer? But again, it varies. I'm sure the bulb and the fixture influence, as would any plastic diffusion screen you'd put in front of the light. There was a warehouse store we go to, that prior to them changing their lighting in the store, I'd experience all sorts of weirdness after visiting there. We went there one rainy evening to get new tires on the car, and shopped. We were there for over two hours. A bit after we got home, I broke out with a rash, and did the malar thing on the face that "blistered" the worst I'd had up until that point. I missed several days of work from the flare. We couldn't figure out what happened to me, until a couple years later, they re-did their store, including the lighting, and they put up signs stating that their lighting was now "UV-Safe". I'd get a milder reaction from work when they had the old row flourescant lighting in there. Most of this
http://en.wikipedia.org/wiki/Fluorescent_lamps_and_health
article I don't know about, but the "Other Conditions" section, I can attest to, both with the lupus and the migraines...

serand4
09-17-2012, 07:25 AM
Thanks to the Super Moderator, I went out and bought 100SPF face lotion after my first brush with the Maylar rash. Now I get out of the shower and spray my body down with 90 SPF, too (TMI, sorry). I had forgotten how bad the fatigue could get after going out until I read through this thread. It now explains why I practically crawl from my car to my bed if I go out during the day. I also have Raynauds (I know I can't be spelling these right) so I'm sure I would burn regardless. My eyes have been the most difficult aspect of all. During my last emergency visit, my glasses, shoes and Medicare card disappeared due to the intensity of the situation. I was devastated! First, I suffer also from Sjorns so my dry eyes hurt to begin with, then I'm nearly blind and add in the sun and I was in sad shape! I don't think my family understood why I was so unsure about using the phone or watching TV. Fortunately, I bought some cheap "reader" glasses until my other glasses were replaced.

I can't put on a smiley face right now because I really don't feel like everything is going to turn out okay in the end (except in heaven, of course). So today I choose to do all I can to make things the best possible. And sunscreen is very reasonable way to begin!

fhallock
01-01-2013, 08:33 PM
I live in the dark and I lack blood so I need transfusions. Soon Anne Rice will be writing about people with Lupus.

GinaCanada
08-08-2013, 02:23 PM
so much good information here - recently diagnosed with the skin kind of lupus - but I used to get horrendous migraines and couldn't stand light then - I wonder if there is a connection?

Leaniebean
08-10-2013, 06:20 PM
I really believe so because my migraines where beyond horrible. Once they started treating me last year my migraines went away. I haven't had my medicine in a month and I have had horrible migraines two weekends in a row

MissDIY
09-03-2013, 08:28 PM
I'm curious if anyone has had the itching reaction to the sun?

It never used to be an issue for me until this year and on 2 occasions I have had relentless itching that lead to 3am oatmeal baths, deep bruising on my arms and legs (areas briefly exposed to the sun), itching in my sleep and near madness!!! One time lead me to a Medrol dose pak for relief.

I have not been in the sun for more than 5 minutes since b/c I am terrified of what will happen. Even with a dermatologist brand of special sunblock.

lucky7
09-07-2013, 01:02 PM
HELLO missDIY! I too cant go into the sun (or ANY UV lighting!) or I ITCH ITCH ITCH....Along with BAD joint pain, nausea (I even have thrown up! EWWWY!),headache,brain fog.....I LITTERALLY will take a nap from how EXHAUSTED I can get from being in UV light for just 5 minutes... My rashes pop up all over my face and neck in one form or another..... Sometimes I even get ITCHY ALL OVER my body! Sometimes the rashes are not raised and subside once im in my "safe home" BUT soemtimes they ARE raised and can even bleed if Im "hit" by the light for too long....(Like a Drs appt or at a store).....YUCKY LUPUS!!!! No WOO HOO to THAT!

Alis
12-04-2013, 01:37 PM
Hi! I also have rashes. This also wasn't a problem until this year. I have a terrible summer I have to stay home because my rashes become blister and leave mark all around my face and neck.

lmgillis
05-15-2014, 07:57 PM
lots of times i just try to carry on with life, but usually lupus gets in the way and i falter, i feel the same way u do, and most people can not empathize with us,

KFJim
09-23-2014, 07:39 AM
I also am very sensitive in the eyes to light. Have to wear shades when I go out. I like the evenings, I get to take my long sleeve shirt off, sun glasses and pretend I am normal for a bit :~}