So most of my life I hide from day light and any fluorescent lighting. Yesterday , with hat and glasses on I get something to give to my friend's friend. A real nice guy. We talk at most 15 minutes in the drive way. No sun on my face or head, only forearms. He is going to people at U.C.S.D. with my "People's Boycott" to get it copied and out since I'm not real computer suave and don't know the groups to contact. He said there's great excitement about it , calling me the new Thomas Jefferson. If you see it,give it a read. It is truly a start to re-empower the common person in a collective force.Took me an hour and a half to write. Any way the U.V. exposure of 1/4 hour made me drop limp in about an hour and I was down for 4 hours. Woke weak, groggy, eyes blurred and light sensitive,dry (what's new). My forehead rashed,and already blistered and red pops,not just a few. I could feel scalp sores coming up, and some red pops on cheeks and tender sides of eyes. Kidneys aching ,joint pain is vertually always, so hard to tell about that. Is anyone else this reactive? Once blistered is there any good treatment of it? Once exposed my face often changes daily or faster . I use U.V.b spf 55 sun block. A doctors visit puts me in bed at least a full day often more, I have to stay inside with all the drapes closed 3 to 5 days after and I where sunglasses and hat at the appointment, only taking off the glasses once the Dr. is in the room. I'll get dressed and lotioned, do something breif outside to see if I'm stable, and have looked in the mirror in dissmay , my face too scarry for public. And cancel shopping. Carefully prepared, with a freinds help I try to organize and help do my outside "must do's", Istay in the shade mostly and 3 to 4 hours is about my max. I pay dearly for it 4 to 10 days with all the above. Add tongue sores, oral thrush, lip and muoth sores, swallow reflex and walking co-ordination bad, intestinal cramps and stabs, Two months ago I Had to go to E.R. because of my back. A three hour wait ,with lotion hat and glasses destroyed me . I had to leave before I couldn't walk. I was never seen and I had told them of severe U.V. sensitivity. My face and scalp changed for a month , along with the other nasties. I was so bad I couldn't make it to the doctor's office. He had to call in an order for lumbar X-rays when I could make it. Which leads to the next critical question. Has anyone heard of the spinal vertabra being attacked in a Sjogren's patient? It is severe and I am now living over 80% of my waking life laying flat or reclined. After 15days in a hospital last May, I was released out-patient. No diagnosis "don't lift over 20 lbs. you can break your back .Not even light karate or gymnastic stretches." They heard of my former life. There are multi-focal punctal lesion thru-out the spine., just like Multiple Myeloma but no Bence Jones protien for diagnosis. So the first Onocologist calls me an anomily, saying "sit in a chair and do nothing while we figure this out". He repeated himself after the third bone biopsy. (they are only a 2 on MY pain scale). "Can I do chair exersizes ?", "No." So here I am ,no diagnosis ,another hospital stay , no treatment and my back is actually collapsing . I'm chained to pain meds they keep upgrading and I live with as much pain as I can So I don't live as a zoobie. I have a new Onocologist who saya it needs to be treated weather it's named or not before..well I know the prognosis,irreversable damage is done. Insurance denied his request for a PET scan; the only way to know the active areas,if it has gone past just the bones, and damage done in the last year. Special. My poor, poor wife, I can't hide all the pain , or what is happening to me. She married a Man who did everything , my body is now a failing shell and a burden. Reality. How I got Sjogren's;35 years custom tile work, my own buisiness led to C.O.P.D.. Medication Azmacort led to shingles . Improper E.R. presciptions almost lost my eye and caused pernanent nerve damage and viral trauma led to autoimmune attacking eyes. Domino effect.
I can relate to being ultra-photosensitive. I can't stand in the sun for more than five minutes. So I use an umbrella which helps. When I go to an indoor place I won't sit under florescent lights. At the doctor's office I turn them off in the examining room while I wait or look for a dark corner. At work I brought in all lamps with incandescent bulbs and everyone loves coming to my office because it is so calming. I wear a long sleeved swim shirt for swimming and usually just swim at night. I took up astronomy as my hobby. Sorry you are having so many problems. Hope there are some answers for you that you find. I have been blessed with very good doctors.
KL
Sure sounds like UV sensitivity to me, and with systemic symptoms, like weakness and "grogginess" it's bordering on severe. In it's most severe presentation it can cause nausea, vomiting and loss of consciousness.
Without knowing what treatments you've used, it's hard to say if your spinal problems are caused by SjS or something else, but it sounds remarkably like osteoporosis (at least your doctor's reaction and suggestions do) and that can be a result of steroids, autoimmune attack on the adrenals, or other treatments of the adrenal complex.
May I ask a favour of you? Would you mind breaking your posts into shorter paragraphs? Many people here who have vision problems, find it very difficult to read large blocks of text.
Good Heavens Rostradamus, you are in a mess... most frightening I'm sure!
I react to sunshine, never sit in it unless in the shade.. When it does get too hot here (UK) I do feel as tho' I will boil over at times with it...
I was wondering if taking Antihistimines would be of any use,
I pray that someone will come up with some answers for you pretty soon and help with the misery you are having to live with..
So sorry I cannot offer any real advice , but keep in touch and let us know what happens next..
Best Wishes, Dolly
Linda 196, I've tried using my tab key to break paragraphs like
Linda196 just lost an hour of one eyed one fingered typing .I tried tab, and lost another post. Plus what I had to say ... I'm too computer stupid to use a web site , navigate and . It was only about 8 sentences. more than fustrating.Can't redo. Eye and back sreaming. This has happened about every other time i try . Is there directions somewhere. The quantum therory is easier for me.
Unfortunately the tab key will take you out of the typing window, but a double tap on the "enter" key will drop your cursor down 2 lines to start a new paragraph. A single tap will take the cursor to the beginning of the next line.
If your computer's settings for whatever reason don't allow this, please continue posting as you do, there are a few tricks to make it a bit easier to make out from the readers point of view. For anyone having trouble with blocks of text, one trick is to highlight (hold left click and drag, as one would for 'copy and paste') small parts of the text, that makes them appear white on blue and makes small sections stand out.