I have SLE and have been photosensitive since I was 14, but it has got much worse in the last few years. Aside from the skin blistering and all that fun stuff, when I'm caught in the sun I find it very painful and also very distressing. I get really confused and disorientated, then upset - almost to the point of panic, certainly to the point of hyperventilating and tears. Physical weakness and exhaustion also happen alarmingly quickly when I'm in the sunlight. Once I'm indoors or in the shade I'm generally fine again after a little rest.
The doc is generally really nice, but hasn't said much about this reaction, other than it's 'possible'. I'd really like to know if others experience this too, as it would very very reassuing to know it's not just me, and that I'm not going a bit mad, which as I'm sure we all know, can sometimes also be raised as a possibility. Also if there is any medication that can help? I'm not on any meds so far and am going to hold off as long as possible, but the sun sensitivity is horrible. I am doing all the usual preventative measures eg UPF clothing such as hat, parasol, gloves, sunscreen and general sun avoidance but sometimes I get caught out.