I read this site alot because although I have Sjogrens and systemic vasculitis I have many lupus symptoms too and have divided my specialists whether lupus is a definite diagnosis too, but I have a question on sunlight which I know is a big issue for many people with lupus.
I have to avoid the sun and if I can't avoid it wear factor 50 and head for the shade, however I notice that even just being in it to walk to the car for example I get dizzy almost immediately and get the same effect from fluorescent lighting that is in shops and many hospitals. I understand the whole physical effect that the sun has on skin and why that can cause symptoms or a flare but I seem to be getting the same as soon as the sun appears from just getting from a and b in it. I am having a bad time at the moment and a re-emergence of my symptoms, hair loss which is always a bad sign for me of worse to come have felt really dizzy for the last few days and am sure the sun is to blame. Does anyone know if it can be an effect the sun has on eyes? I only have to walk under a fluorescent light in a shop and I feel like I could fall over I am so dizzy and weak legged (I have neuro symptoms too).
I had a bad flare last year after the brief early summer we had and am not sure what the answer is.
Many thanks for reading
Jenny
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Galaxy2
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Hi, I found your post interesting as I too have been wondering this.....last week I went to a concert but the sun hadn't gone down and I was in an open space (and forgot my hat). Walking back to the car later it was like I was drunk and I was very dizzy. So interested too in the responses.
Hi, yes to both! I can't go into supermarkets (thank goodness for home delivery), hospital appointments are a nightmare if there's a long wait and I only use wall lights not overhead in the house. Dizzy and drunk sums it up.
I've had years living in the middle east but the sun in UK is so much worse -I think it's something to do with the position of the sun. I'm a keen gardener so I work under a parasol but still end up looking last like a blotchy beetroot! Sunblock doesn't work whatever the quacks say!
Thank you both, interesting to hear its not just me. Yes I find supermarkets a nightmare too and am so grateful for shopping trolleys to lean on to see me round, I have to look up to avoid the lights and walk on the edge of the aisles. Yep dizzy and drunk is a good description.
For all those who are sun/UV sensitive: there is a wonderful website called sun1--Support Group for Sun Sensitive People (health.groups.yahoo.com/gro... --. This organization offers valuable information about sources of UV and the ways different people might be affected. Besides lupus, there are many conditions that are exacerbated by UV exposure; Sun1 is a forum for discussions about this issue. In order to join the group, all you need is to have a light sensitive condition or care about someone who has a light sensitive condition. As far as I can see, there is no commercial affiliation with any product--just some volunteers who want to help.
I discovered this site when I was looking for information that would help me deal with my own UV sensitivity.
Hi I am photosensitive and feel like a walking sauna at the moment as if I go out I wear fabrics thick enough to block all U.V. rays and have no hair so that means my head is covered, I wear a scarf, gloves, long sleeves, trousers, and covered in shoes. All fabrics have to be thick like denim or heavy cotton so that I don't get worse, I don't know if you are aware of the U.V. emitted by low energy light bulbs but they are really bad and my dermatologist told me to get rid of them and go back to the old style, I have found a supplier and stock piled them in case I can't get hold of them any time. The first time I went to my dermatologist and my skin was really bad down one side of my head,neck and shoulder, my ear was almost consumed by lesions she said to me take the low energy bulb out of the reading light that you use, how spooky was she a peeping tom? No just damned good at her job, phew! I am happy to say that all those places have completely recovered now.
There are also products you can add to your laundry to increase sun and uv protection. In the US, I use RIT. I have found that even clothing is not a protection against the uv rays (we are aliens, you see) and this product has been very helpful. Clothing alone is not a protection, sadly. I suffer immediate reactions when indoors and this product has helped and become a part of my armory.
FYI - What I have discovered, along with my doctor's confirmation, occasional exposure, though painful and consequential, can be recovered from. However, constant and repeated exposure with no recovery periods or limited recovery periods begins a cummulative effect. Though the long term effects have not yet been investigated, I can personally attest to my own situation.
When I was first diagnosed, I did not have light sensitivity. Several years into my diagnosis, I was in the schoolyard with my students, signing yearbooks at the Senior bbq. Unbeknowst to me, I got a sunburn on a small patch of skin on my back. This sunburn triggered the light sensitivity and it has not abated. If anything, it has become worse. Due to a current work situation, I am constantly and daily exposed to these harsh lights and have anything from intense headaches to dizziness to throwing up to almost passing out. Once, I actually fell to the ground. I have had a steady and downward decline as a result of this. In the past year, several other Lupus consequences have come about - the worst being Chrone's and Raynauds's. I am fatigued and air-headed and generally, my quality of life is a matter of daily struggle and battle. In short, it sucks. But, I need to the job, and am trapped.
Good luck to all and please take the precautions necessary - even if you don't currently have any issues. The gift of lupus is that every day there is a new surprise! Gosh, we are strong people, aren't we?
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I am happy to say that all those places have completely recovered now.
Anyone in Cornwall?
Does anyone know if, or how, it maybe possible to lesson the Lupus photosensitive reaction to fluorescent lighting please?
When to go to the GP with suspected Lupus?
Malar rash????
