Sun Sensitivity

I seem to have a real problem with sun exposure..This is now the third time it has happened.

I plaster on factor 50, wear a sunhat and everything except my fingers is covered. Yet again, after a lovely afternoon out, I started with headache, dizziness and aches and pains and swelling the same evening. It got worse the nxt day and today I coudn't even get out of bed.

I am hoping there is someone amongst you who has experience in this and can give me do's and dont's?

I can't really ask anyone "please take me for a day out but only when it's raining"???

Advice /miracles gratefully received;)

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19 Replies

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  • Ursi, yes you have to say, "I can't go out today, maybe we could go enjoy an indoor activity." You can't gamble with your health that it might not happen this time. Sun-sensitivity is something that you can control, a lot of things we can't, but this is one flare you can prevent. If you are using all these preventive measures (you could up your sunscreen and apply regularly while out) and still flaring then wait for a cloudy day to go out. You may miss the sun but you won't miss the flares. Sorry.

  • I apologise in advance for being so abrupt. You have LUPUS. Stay out of the sun! It's not rocket science. We have more days without sunshine than with sunshine in this country and it is not always raining. Still plenty of scope for days out.

  • It does take some getting used to I used to live in nz and was constantly tanned and in the sun till I got lupus nearly 2 yes ago and had to return to my parents in the uk. But its not all doom and gloom, you can get uv brolleys which are fab when you are out and concerned or there's no shade. I use a large one in the garden when I'm playing with the dog and a small one that fits in my handbag when out and about. Great for this country as also works as a normal rain brolley :-) then you can go out in the sun and not have to worry so much.

  • sent you a pm

  • I recently moved from Australia to Germany (two lots of summer but better in Germany )and loving the overcaste and rainy weather as winter moves closer. I can get away with my UV clothing (all long sleeved) without looking crazy. Umbrella is a great idea...where did you get yours? When I first arrived I was still not well and had to wear hat and sunglasses in the shops...thankfully meds kicked in and I can look slightly normal...not a good look with the above clothing plus jumper and jeans in 40+ oC in Aust ;)

  • I completely understand what you are going through. Unfortunately, like its already been said try to stay out of the sun when it's really sunny. Go out for short times if you absolutely have to, but you have to think about flares and how bad they are. Then weigh up sitting in the sun for one afternoon, and weeks of pain and symptoms.Unfortunately this disease makes have to rethink our lives and what's really important xx

  • I am very sorry for your troubles but it is something that happens with Lupus. I am extremely light sensitive to the extent that I cannot even bear the light off my computer screen and have it turned right down so I can only just see it. I cover my arms and the backs of my hands when using it. Indoors I wear pink tinted clip on sunglasses over my prescription glasses as this colour is very comforting and soothing, (even if I look like an old hippy) and if I have to go out I use very very dark prescription sunglasses. My eyes are bone dry with it and I use drops every hour and ointment in the eyes at night. I have Avene products (off Escentual.com) and they don't have any nasties in, to use on my face including a compact of cream to powder foundation which I use over the top of the factor 50. The foundation is also factor 50+ and is very nice on. You can build it up and the more you use the better protection you have. It looks very natural too. They also do many other high factor creams which I use under it and I find it helps. The doctor gave me Sunsense Ultra which is very high factor but it has a strong perfume which I find horrible and it affects my eyes (makes them itchy and runny) so I don't use it. That may be suitable for you. Like you I have a variety of sun hats for when I cannot avoid going out. I have dimmer switches on the lights in my lounge and in a small table lamp an orangey coloured small lightbulb because amber is the most restful colour for eye problems. My friend who worked with the blind in Cornwall told me this. I find it difficult to accept all of these things into my life but once you find you can start to accept it and deal with it accordingly, you will manage. It isn't easy and you feel 'why me?' but I have just been discharged from a spell in hospital after being very poorly. I had lots of tests and have been told I don't have cancer so really I am lucky although I know sometimes it's hard to feel lucky with all this. I am on other medication for something else which stops me using pain killers but after seeing the rheumatologist yesterday I am now waiting to see if I can have analgesic patches. So - don't give up. There may be an answer and I wish you all the very best. Keep as positive as you can. Good luck.

  • Yes I also have experienced this had cutaneous lupus for some years now it takes a lot at times to deal with it I use neutrogena ultra sheer dry touch sun block factor 55 re apply in long exposure always stay covered up including sun glasses it's advisable to stay out of the sun between 11am and 3pm during the day when the rays are at their worst I have also found certain anti biotics to worsen the symptoms penicillin and sulpha based ones I also keep my vitamin D in check as it can fall very low staying out of the sun and this causes problems too. I have recently been buying as much organic food as I can afford especially meat as it isn't treated with anti biotics hope I may have helped in some way wish you all the best lets know how you go on.

  • Hi Ursi,

    unfortunately you are not the only one who experiences these symptoms.

    However this is one of the most easiest of problems that we can control ourselves.

    I was stupid enough to spend most of the weekend on the coast outside where obviously there was a breeze but glorious sunshine. And yes I have certainly paid for it, swollen joints, headache, nausea, exhaustion and pain.

    It was my own fault though, we could have walked on the shady side of the road, kept popping indoors, I wore factor 50 and kept most of my body covered but I know it's still not enough.

    We just have to be more careful and wait for a dull day, small price to pay I think and so simple to do to try and keep those horrible flares down.

    Hope you feel better soon.

  • Just wanted to say I'm sorry you're experiencing such sensitivity to the sun. It must be very hard to deal with when you love the sun. I have SLE but no sun sensitivity so far and I know if I do experience this in the future I will find it very difficult. The advice about the UV umbrellas seems positive so really hope this works for you. Good luck xx

  • I too suffer in the sun. I finally decided to spend as little time as possible in it.

  • I too cannot go into the sun for too long, when I have to (walking to work) I wear sf50+ and cover up. I avoid the strongest hours and walk my dogs very early morning and late evening as temp lower too. I do feel for you though as planning a dog walk according to how much shade there is is no fun x

  • Hi everybody

    thank you so much for taking the time to give me advice. I have certainly taken your wise words to heart and shall try and follow them!

    I wish you all as little pain as possible

    xx

  • I no what you are going through'

  • I too am sun sensitive, it so very hard l use factor 50 and have a fully line uv safe umbrellas, and have to keep fully covered up at all times, but not only can l not go out in the sun, but l am also very sensitive to all uv lighting, which makes going into most shops a no go area, this l find very hard. So have to shop on line, which is not very easy, when buying clothes or shoes. I really feel for you. Its not easy . I have just been diagnosed with raynauds and been told not to go out in the winter months without heated gloves, thermal socks and hat. Is there no end to this at all Xx

  • I too have a sensitivity to the sun only my face just seems to tan and I get white blotches all over my face which even make-up seems to make no difference to. I've tried camouflage make-up but find it very heavy and thick,so I have resorted to putting a towel or something over my chops if I am sunbathing for a VERY short time.

  • i have just been diagnosed with lupus in september after going to greece for 10 days in july /august where the temperature was 40 degrees most days i thought i had been badly sunburnt when i fact it was sunsensitivity. i have been told that i am sun sensitive and need to cover up and use sunscreen when i go out in the sun.i will not be going out in the sun without covering up as its not worth it. i also have raynauds in my fingers so have to wear gloves when temperature drops

  • I purchased 6 x Long sleeved 50+ shirts from Coolibar online and mix and match these with light tops and sleeveless jackets in summer, and under jumpers in winter . Cost a bit but prefer them to slathering sun cream and paying for hyper allergenic products constantly can be just as expensive. I recently moved from Australia to Germany and even though UV is half what it is in Australia I still need the protection. UV is less from sun in winter, but better to be safe than sorry and also good for those horrible Fluor and halogen indoor lighting all year around.

    Ironically my hubby is a lighting designer and I am trying to get him to advocate for health illnesses that get effected by lighting. Crazily every time I was admitted to hospital in Australia (Both i and Dr's did not know what was going on) I would get sicker and have strange reactions to meds which were normally fine for me. We had a great new hospital, but the fluors were extremely bright and the floors and walls white (a nightmare for skin and eyes). My hubby later told me there is normally extra loading on new lights to save on maintenance costs of new buildings.I just found out that in our new home country Germany they specify stronger internal lighting.

    Soooooo be careful in new buildings if sensitive to light, and avoid directly sitting under lights, especially for long periods, eg in meetings, waiting for apts and when shopping (supermarkets often use factory unscreened Fluro lighting). I have significant reactions which others have mentioned but also heart attack type symptoms caused by it triggering my esophagus to spasm. But hey, when you know what is bad for you it is so much more empowering...I try to focus on being creative rather than worrying about what I can't do...and sharing it with others to raise awareness of lupus but other health issues that may cause UV sensitivity.

  • After my long winded post I forgot to say, like with sun cream UV clothing does not fully protect you so avoiding long periods of UV is still required, but at least you have protection a you go about your day. I stupidly thought it would allow me to do what I wanted, but 1.5 hrs in sun is not good no matter what ;). From my experience anyway.

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