Hi szeeba, i'm the one having the most recent complaints about the flouresant lighting. I don't claim to know all the answers,but I know the sun drains us like someone wringing out a wet wash wrag! It has to do with the uv rays. Sucks all our energy. Why exactly I don't know, but I really miss being able to enjoy the sun.
Your right, lady brannon will know the answer. I'm sure she will let us know as soon as she reads this. I get blisters on my lips. It's hard to keep something on them since I don't wear lip stick and I am always thirsty and that makes it hard to keep lip gloss on. Plus it makes my drink and food taste bad.

sharon

Hi szeeba -

i'm in the same boat as you; i've been diagnosed since april 2002. I hadn't had any difficulty with sun sensitivity until probably april of this year, a full year after my diagnosis.

Almost everyone you talk to who has lupus has some kind of sun sensitivity; others have sensitivity to fluorescent lights. I do not know how this has come about, I am sure others like ladybrannon probably know more about the how and why (hi ladybrannon).

When I get too much exposure to the sun I become very dizzy. This usually happens on a very, very sunny hot summer day. If the day is "normal" and I get too much exposure, I develop a very high fever the next day that is hard to break; it usually takes 24 hours.

There is a product made by the rit people which is called sun guard. It provides an spf of 30 and is for your clothes. Most clothing if washed regulary has an spf of 5. This is great for people like us.

Also, the long sleeves and long pants, even in summer, are a great idea. You might also consider wearing some kind of hat to protect your head, esp. If you develop a rash. I have a collection of sunhats and a couple of baseball hats that I alternate.

Hope this helps some.

Clarebear

I've asked the same ??I do not have intense reactions to the sun yet, but have been told to keep out of it as much as possible, so I wear spf 45 year round,hats or visors and sunglasses. At 49, with hot flashes, long sleeves are tough to tolerate, so I keep a white shirt in the car to pull up over the arm that is exposed....Tinting on your car windows can help..You can get special permission from the state if there are restrictions on window tinting...Just ask your dmv for a medical exemptions form .
From my research, I think our sensitivity has something to do with our skin being the largest organ in our body. When exposed to sun, we tend to "burn" even as we tan. A sunburn is an inflammation of the skin. There is some kind of cellular change for everyone....But lupies need to avoid inflammation of any kind so we do not trigger our immune systems to fight it....Thus setting ourselves up for a "friendly fire" situation.That's why even those of us who are not affected dramatically should avoid over-exposure because it can possibly trigger a flare in our bodies confusion about fighting the inflammation and going after healthy parts too. I'm sure there is a great scientific explanation for this, but this is how I have been able to explain it to myself. I am open for further clarification or correction if anybody knows more.
So, do I stay in the house during daylight?? I probably should, but I don't. I love to garden, so I work on the shady side of the house and follow the shade around. I try to walk on the shady side of the street and have been known to use an umbrella on sunny days when out and about.
I teach driver education and spend most of my day in a car....Have tinting (light) on my windows, but also just added a mustang convertable to our fleet. I know I should probably not have the top down , but at my age and the joy it brings my students, it sure makes for a wonderful day....You can't beat a beautiful summer day with good tunes on the radio and driving around town "topless" i'm sure I might pay someday, but I also feel that we need to make the best of every good day we have.......When I was first diagnosed, I was very frightened and felt that fun times were over. It scares me that this dumb thing will probably kill me someday....Then again, I could get hit by a bus tomorrow. So, I decided to take my meds, obey my doc's as best I can, live each day to it's fullest and watch out for buses!!! I have really done quite well ever since............Take care all. :d

Hi, and if I felled to before, wellcome!
I hear you! All my life I spent as much time in the sun as possible. When I was a child and lived with an abusive parent part time ,the sun became my friend. The best thing as a child is to avoid a confrontation with the abusing person.
So I spent most of my days out in the sun. I felt comforted by it,since there was no warmth coming to me from inside the home.
I've spent most of my married life in places where the sun is dominate. Cal, hawaii,guam,florida,texas,and now so.-ga. It's kinda hard to avoid it. I too love to garden, and did not listen to my doctors warnings. The 5 yrs we lived in texas, where I was diagnosed with lupas, we had 5-ac. Of land, and I spent alot of my time out in the hot west texas sun.
I'm paying for it now! I would still have done it,because I loved every minute I spent out there. We have to live our lives to the fullest. I just wish I could have had a few more yrs to enjoy it. I feel like i'm loosing time with an old friend.
Well, that's my nickels worth!

Sharon

Hi guys,

the way my dermatologist explained sun sensitivity to me is....

Essentially lupus patients are allergic to the uv rays that come from the sun or flouresent lighting. When we go out in the uv rays our body (for lack of a better term) has an allergic reaction. It doesn't take long, I only have to be exposed for minutes. It can affect people in different ways like high temp, dizziness, fatigue, rash, burn,etc...

my doc told me not to go out in the sun and I got upset but she simply said"if you were allergic to peanuts would you eat peanut butter". It can trigger flares or with me a hospital stay. I don't think most people with lupus realize how dangerous the sun is. I didn't until I got 2nd degree burns, I was only out for 20 minutes with spf 30 on. There are still places on my shoulders where I have no feeling from nerve damage.

i'm not trying to bring everyone down but I now realize how important it is that we stay out of the uv rays.

I wear spf 60 and long sleeves. I never go out in the garden or stay outdoors exposed for more than 5 minutes. This is not how I want to be but I want to have a good quality of life. Thank goodness it snows from november to april here. I still wear spf 60 in the winter but the cool air feels nice.

keep smiling,
jenn

Jenn...You nailed it. It is essentially an allergic reaction. I will warn you; alot of our reactions (with more than the sun) can mimic allergic reactions, as I am sure you have noticed...Rashes, stomach upset, etc. Thus, as you can conclude, allergies *are* an autoimmue reaction. The lupus reaction *seems* to be more rudimentary than an allergic reaction alone though.

Remember also that some people are also sensitive to the heat that goes along with the uv light. The heat, from the sun, can further excascerbate the issues. So, beware of the heat as well... I have a lupus friend in tx that is in her late 60s and everytime she got overheated, she would react as if she had been in the sun for 20 or so minutes.

Wear your sunglasses, wear your sun *block* and try not to go out if you don't have to...Especially if you are overly sensitive.

Hugs,
ladybrannon

Hi all, I went to jacksonville fl. Today to have lunch with our extended family who are visiting from ill. Jax is about 50ish miles to the south side from where we live now.
After lunch ,my hubby wanted to take them to see our old neighborhood, and we ended up at the beach.He wasn't thinking, and I didnt want to spoil their fun. We parked and walked a short way , it was nice and cool. Total of 15 mim. Or so.
I wore my hat,and sun glasses. But forgot to put on my sunblock. I carry it in my purse, I just wasn't thinking.In about an hour or less ,my neck on the right side felt strange.
It was a raw feeling, and then it started throbing!!
It's been about 5 hrs. And it's getting worse! It now covers all the right side of my neck and the top of my shoulder.
It feels like when you skin your knees and it burns!
I will not be repeating this field trip again!
Something has changed with my lupus. I'm haveing more problems than ever before. I'm not due to see my rh doc. Till nov. 11th. I can guess why the burnings from, but why is it throbing?

Sharon

Sharon...Call your doctor and tell them you *need* to be seen...Please.
We will be thinking about you!

Hugs,
ladybrannon

Lady b, what do you think is causing this? It's now spread around to the front of my shoulder and neck and uper chest area. It feels so weird!
The throbing has gone up into my ear and jaw on the right side. It's not constant, but like shooting pain.
My skin is very sensitive to touch.
I will call my doctor tomorrow if this continues. It would not help to go to the er tonight, because they would do nothing but run up me a large bill I can't afford.
If it gets bad!! I'll go, but only then.

Sharon

I haven't had a lot of problems with the sun myself, but the heat makes me really sick to my stomach. Just driving to work {about 10 blocks) and the sun shining in the windshield makes me feel really sick. After I get to work,(inside), I feel much better.
I've always heard I shouldn't spend much time in the sun, and my first doc told me to wear sunscreen,wear a hat (i'm not really a hat pearson), sunglasses,and absolutely stay in from the hours of 10am and 3pm in the summer. I really didn't think much about it, but now... I think maybe I should.
I would like to hear more if anyone would like to share their experiences.

Luck&love sharon, I hope this gets better. Go see your doc.

Hugs
kris

I have no idea the cause (other than you saying it seemed to be directly related to the sun), but either way (start of a flare or the result of some other illness) your body is *not* reacting very well.

Furthermore, we all know that lupus, at *any*time can decide to get worse...You said yourself that you thought your body was doing some different things. *please* go to the doctor asap!

I'll be thinking about you! Hugs,
ladybrannon

Good morning all

I didn't sleep well again last night, but i'm still here!
my sholder is still hurting , but not as bad as last night. My skin is very tender in the affected areas.
I've canceled all activitys planned today. I'll just rest as much as possible today.
I plan on calling my doctor today and see what they tell me. I'll let you know........Sharon

I have been reading the above inputs, sort of like being five alive did in the movie Short Circuit.

Life can be tough for anyone with a progressive illness. I am again having issues with my MS, this time it is on the left side of my body as it is causing me to feel cold on my left and hot on my right. Talk about strange, this is a new one. I have been blind from MS for 3 months and recoverd completly. Then I lost my ability to speak and shallow solid food. Partial recovery from that one. Boy was that bad as I love to eat:-)
I have a close friend who has Lupus, she teaches 2nd grade. We are both survivors.
All we can is keep the faith, survive one day at a time. Pray for better days.

i was dx with lupus in 1989 and i was very ill for about 3 years and then luckily went into remission with a negative ana.I have never had a problem with the sun, even laid out a lot on my air mattress for hours with no negative results. Now if I stay outside for 10 minutes at time with SPF 30 sunblock on my skin looks like I have been burned in splotches.This is even happening through my clothes. Is my lupus coming out of remission or does anyone have any ideas what's going on?