PDA

View Full Version : Symptoms of "Photosensitvity?"



mnjodette
04-12-2007, 07:46 PM
I talked to my rheumatologist about several instances of being in the sun and then feeling nauseated and tired...just generally 'sick' afterwards. She said, no that's not photosensitivity...she didn't know what that would be. She said photosentivity is just a skin thing - rash and sores after being in the sun. I don't know what to think about that. I really do get 'sick' sometimes after being in the sun. I don't have any significant skin involvement - no ulcers, no bumps. Just a malar rash sometimes (face, neck.) So, is my sun problem 'real' and part of lupus or is it just coincidental - maybe not really related to the sun or the disease at all? Makes me wonder if I'm imagining things..... Anyone have similar symptoms from the sun?

Jody

rheuminator
04-12-2007, 10:20 PM
Are you familiar with Daniel J Wallace? He wrote "The Lupus Book". He has a website and you can google it to see his CV. Anyway, in The Lupus Book he talks about having some patients who are so photosensitive they have a Lupus flare just from sitting under a flourescent lamp. Their flares are not just rashes but include other symptoms like fatigue, aching, etc.

So I don't think the impact of photosensitivity is confined entirely to the skin. The rash might appear there, but maybe thats only because its a surface we can see. I have a friend with severe organ involvement who won't "do sun" at all. No picnics, no long periods outdoors at all. In her case when the flares come, its her skin, yeah, but also her kidneys and eyes and brain, etc.

Hope something in there helps

Saysusie
04-13-2007, 08:43 AM
I never get rashes immediately from being in the sun. My symptoms are always exactly like yours - nausea, fatigue, and just an overall sick feeling. Our sun sensitivity can sometimes cause a Lupus Flare. I think that our nausea etc. are precursors to a lupus flare. So, if we do not get out of the sun, get some rest and take care of our bodies, we may have a flare-up which then could include manifestions on our skin, among other things.
Not everyone reacts to the sun in the same way. Yes, many people see the results as rashes etc., however, like you and me, it takes a while before we see those symptoms. But, we immediately feel sick! So, it is not your imagination. There are many of us who react this way to the sun :lol:

Peace and Blessings
Saysusie

kimb
04-13-2007, 09:43 AM
Hi Jody!
I get the same thing after being in the sun(when my lupus is active)I also would get a low grade fever. Before my diag. I wondered why I felt so yucky after a day outside!
:cry:
Kim

mnjodette
04-14-2007, 04:40 AM
I'm happy to know I'm not just a hypochondriac! And Saysusie, now that you describe it, it explains my last couple of big flares a bit more. I had to travel in a car both times, 3 or 4 hours each way, and it was sunny. I tried to cover up, but we don't have tinted windows so that was hard. And, of course I also got very tired. Anyway, after both of those trips, I got very sick again. I didn't make the connection to sun exposure, but it makes sense that it could have had an impact. We're going to get both cars tinted now and I'll be much more aware of that. It's so good to have a place to check out these things with people who know what I'm talking about! Thanks, everyone. You're the best!

Jody

MARYCAIN
04-14-2007, 08:04 AM
Jody, I don't have any significant skin involvement other than a malar rash, but I am extremely sun sensitive. My doctor has always told me that exposure to UV can trigger a flare whether you have "skin" symptoms or not. Even in some indoor situations with certain types of lights, I will start feeling woozy and sick to my stomach after just a few minutes. There are some stores I just can't go into. And there have been a couple of flares in the last year where my organ involvement got significantly worse, and both of them were after being outside for a fairly long period (a family reunion and the twins' play off basketball game), even though I was wearing sunblock and long sleeves. Both times my labs showed a big increase in sed rate and decrease in complement levels. So it's not just a psychological reaction on our parts - our bodies are physically reacting to the UV exposure. Remember that glass will only filter the UV - it doesn't block it - so being in a car or even next to a sunny window window can bring on the symptoms. I had to have the windows of my office treated with a special clear UV film - since our offices are located right on the Ohio River, all of the offices and conference rooms have floor to ceiling windows along one wall. Perfect for someone with lupus, right. I could just keep the curtains closed, but I hated to give up the river view.

IloveHistory
04-14-2007, 10:53 AM
Hi!

I get a malar rash when I go into the sun, but a lot of the time, parts of my sun-exposed skin (especially my arms) break out in Dermatitis! :? It often happens when I am wearing short-sleeves and I lean my arm against the "window-ledge" of the car, while my mother is driving. Does anyone else have this? :?

My skin is EXTREMELY sensitive and I am a highly allergic person, so I don't know if this plays a part at all?

Thanks and keep well! :)

mnjodette
04-16-2007, 12:32 AM
I know what you mean, Marycain. All of our offices overlook Lake Superior (we're just a block from the harbor) and it's just lovely. Unfortunately, I don't have UV film on the windows, so as the sun comes around, I have to shut my blinds. Grrrrrrrr. Million dollar view - no tolerance for the sun...just not fair! :x

Bama
04-18-2007, 01:24 PM
I can be in a room with uncovered florescent light bulbs for 30 minutes and feel the effects of the UV. One office I work in has nothing but uncovered florescent lights so I have to wear sunscreen all over my body (even under my clothes) and a hat made out of UV blocking material that I bought at Coolibar.com or else I'll start feeling sick, tired, and achy within 30 min.

camyskitties
04-30-2007, 09:48 AM
I *always* get the malar rash when I go out in the sun even if I use sunscreen, hat, glasses, and makeup with sunscreen. Since I have a two year old, I have to go out sometimes. I can't keep the child indoors forever, ya know. I just try to limit the amount of time outdoors and go out very early in the day or late in the evening. I bet my neighbors sometimes wonder what in the world I am doing on the trampoline with my daughter at 7:30 in the morning! LOL! Oh well....

mnjodette
05-02-2007, 03:24 AM
I just found some not-too-expensive UV protective clothing at a local sporting goods store (Gander Mountain?) It was a bit cheaper than the stuff from LL Bean (and a lot cheaper than the Columbia brand stuff.) Kind of cute shirts, both short and long-sleeved (not sure why you'd wear a short sleeved shirt if you're trying to cover up, though!) I bought one, but am thinking of going back to get a couple more so I can rotate them this summer. I'm hoping that'll make it easier than greasing up every time I have to go out.

camyskitties
05-02-2007, 08:45 AM
In my case I get the rash on my face. Does that mean I need to cover my whole body? Cause ya know my wonderful derm (I'm being sarcastic) never pointed that out to me. Like I said in a different post - he seems more concerned with treating his plastic surgery patients ($$$) than me, someone with real skin issues and no insurance. Anyway, I have always known to keep my face protected but not everything else. Could exposure on my arms and legs trigger the rash on my face?

mnjodette
05-02-2007, 07:27 PM
I'm not an expert, but I'm guessing any sun exposure is going to be a problem if you are photosensitive. It probably doesn't matter if it's your face, your arms or your legs. The good thing is there are a lot more options in sun blocks now. Some last longer, some aren't so greasy. I think there have been a number of them mentioned on this forum. I use the new Aveeno stuff that is 45 SPF and is supposed to last a lot longer than ordinary sun block. It's not greasy and little goes a long way. (Which is good, 'cause it wasn't cheap! :lol: )

Jody

TammyR
05-06-2007, 10:37 AM
I have tanned every year since I was a teen. Yes, I know it is bad for you! Last summer in August out of the blue after tanning outside since March my eye lids started itching and swelled almost shut. I then itched on my lids, under my eyes and beside my nose. It lasted about 4-5 days and then peeled. I thought I developed some kind of sensitivity to my sunblock because my face has always been more sensitive to the sun. So, I tried different sun blocks, less time with the sun exposure to my face and sun glasses and nothing worked. Has anyone had this instead of the butterfly rash? I also have an itchy face even when not in the sun, especially at night.

Oluwa
05-30-2007, 08:09 AM
Hi Tammy,

How are you? Soothing skin yet?

Hey, see what common ingredient all the sunscreen products have because you maybe allergic to a particular ingredient.

Your reaction around the eyes sounds just like mine. I am allergic to dimethicone and forms of it which is found in most hair, face and body care products.

Tiresome, but I read all ingredients now and avoiding dimethicone has cleared up those symptoms on the face.

In the thread called "Itchy" under SLE Smptoms I listed the products I use.

Keep well,
Oluwa

sary
05-31-2007, 12:43 AM
A couple of weeks ago, I had just finished work and I was really exhausted. It was such a sunny beautiful day out, and I so badly just wanted to lay by the beach in the sun for a bit.

I ended up falling asleep for a hour or so (no sunscreen, although I was wearing a lot of clothes) and I remember feeling so sick afterwards. The next day, I was soo ill.

My body had just become so drained, I felt achy like I had the flu or something.

TammyR
06-03-2007, 07:42 AM
Oluwa, I just avoid the sun. I have been in the sun with and without sunblock and still have the same symtoms. At night itching has gotten better, but I don't use anything on my face when it happens. I do have a reaction to certain sunblocks, so I stay away from most of them. Neutrogena Moisturizer is one I use under makeup. It does not make me itch or have the burning/tingling other sun blocks give me.

Oluwa
06-04-2007, 09:48 AM
Tammy,

Great the night itching isn't as bad. Itching in the dark, one can scratch their skin raw. "Itch bruises", I've had many in morning.

Do you slather on body lotion prior to bedtime? Maybe that might help.

I have a itch without rash reaction on my face and body to Ultracet, Percocet and etc. so I take it with Claritin or a similar product to tame it.

I do have the malar rash. I look sunburned and pimply like a baby's bottom but the bumps are subsiding with the malarial. The pinkish red tone is still there.

To cover the sunburn looked, I dust my cheeks with a mint ice cream color powder and use also a concealer in that color also then I put a skim of foundation on. Viola. It tones the red down alot. The color wheel... green cancels red to equal brown.

For me, the sun makes me nausea, gives me headache. Also, I feel like I am disconnected. Well, I feel like that alot of the time. Like my body is here and my mind is over there and I just can't get the two to connection. I call it my out of body experience.

Stay covered and keep well,
Oluwa

the_librarian
06-04-2007, 11:31 AM
I have the nausea and headache too. This isn't just when I'm in the sun, but also when I'm on my porch where I can see the sun, but am in the shade. I just assumed this was part of the photosensitivity. It is definitely worse if my symptoms are active, but I also seem to get "over-heated" a lot faster than I did when I was young.

Oluwa- I never thought about using an allergy pill with my pain medication. That is a REALLY good idea. I get itchy all over every time I take one. I don't even notice anymore. If I take a pill without mentioning it to my husband, he can always tell. I'll start scratching my arms or my legs or my back, etc. and he'll say, "Pain pill?" and I say, "Pain pill." I have to say this is one of the things that I do find amusing. A little crazy I know, but we usually giggle about it :D

Oluwa
06-04-2007, 11:41 AM
Yea, AB...

I found Benadryl is too sedating, Claritin is bit mild but Chlor-Trimeton is just right. Stronger than Claritin but not as Benadryl. If you can find it, go with Chlor-Trimeton.

The light of day makes my head and eyes ache. Many days I wear shades in the house as we have lots of windows and also when I am on the PC..the screen does the same. I am wearing them now...

Keep well,
Oluwa