Does anyone else experience emotional/neurological symptoms when being caught in the sun?

[Lucy74]

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.

Thanks all.

[MargaretGail]

Hi Lucy, like you I held off the medication for as long as possible but in the end I had to take it. I think that we can become so aware of how we will react when caught out in the sun that we anticipate the stress it will cause and it sets in the panic. I have been on meds for about 8 years now and still react to the sun but it is a lot less stressful. I experience flu like symptoms and exhaustion but none of the panic that I used to get because I generally know how bad it will be.

[bam1993]

Hi Lucy - I notice that you say that you are not on any meds yet- and that you are holding off, but, have you looked into LDN-Low Dose Naltrexone??? I have been on this since March of this year-and I feel it is the best thing that I have done since my diagnosis (I tried a few of the usual meds, but they did not agree with me-and I had some very bad side effects from them)....I do have to get it privately, but it is not that expensive. Since being on it I have managed to come off of steroids (which I think is a MAJOR achievement!!! ) LDN does work with anxiety problems (there is a lot about it on the Net-just Google it-lots of info will come up)

I do still suffer from sun sensitivity, but not to the extent that you do....for instance, yesterday was really hot where I live-and the day started great-got up early and got a lot done-(this was all whilst still indoors) but then once I had been out in the sunshine for an hour or so (and that was mostly driving) I was just totally exhausted - (I also get very irritable in the sunshine - my dream holiday would be somewhere like Norway/Iceland-somewhere with colder climes!!!) I then fell asleep at my daughters at around 7pm!!!

Anyway I really can recommend LDN-like I say it is the best thing that I have done since being diagnosed.

[onamission]

I have not been diagnosed with Lupus but have many of the symptoms and one big major thing for me is the sun my friend came round the other day we had a coffee in the garden and within 30 minuets I felt sick my joints were so painful I had purple bruises on my arms and my face was red. I don't think DR's understand what its like I have given up now and don't even talk to my GP about it even though the last time I went in to see her my arms and face were covered in purple bruises.

Last week a DR on this morning was saying that if a DR requests a blood test and it comes back but at the high range they don't bother to order any more bloods and this is why the women who was on the programme had under active thyroid and it went on for 7 years before it was detected.

[Lucy74]

Cool, thanks very much for the replies all. Reassuring it is not just me!

Bam1993, no I haven't heard of LDN but I'm off to Google it now, thanks for the tips. I live in Glasgow, and in all seriousness, it probably is the best place in the world for me to live because it rains here all the time and we don't get a huge amount of sunny days like the rest of the UK in summer. Yesterday was really sunny and hot though and it wasn't supposed to be! I'm like you in terms of dream holidays - I've actually been to Iceland in November and it was amazing. I'll avoid it in summer though because they pretty much get 24 hour daylight then

[Vals-pal]

Thank goodness I'm not the only one. It's as though a switch has been turned in my brain and I turn into a raving nutter when I'm in the sun! I only have two solutions - stay inside or walk around with a huge factor 50 parasol and a factor 50 sun hat. I know I look a bit of an idiot but it works for me. My neighbour actually asked if I was looking like that for a bet but he's out of hospital now and doing fine!!

[Lucy74]

Hahaaa Vals-pal! Very funny! Glad your neighbour is doing OK now

I was in London the other day with my parasol, hat and gloves etc - honestly the looks I was getting! Everyone else was lying on the grass with their tops off.

When you say it's as though you're a raving nutter - what exactly happens? I get really frantic and desperate to get into the shade.