So we are forecast a pretty nice weekend here in the UK which is fab for my little ones. Get the paddling pool out and ice lollies on the go.
But I was just thinking about my balance issues and when they started over 4 weeks ago and this coincided with a sunny week in the UK which I spent a lot of time in. I have never really paid any attention to the sun and any affects that it might have on me before. However, being new to this website and having realised that a lot of my symptoms on here are similar to those of Lupus (and still awaiting my auto immune bloods results) I am wondering whether I should stay out of the sun or at least take precautions more.
Does the sun actually cause a flare or make symptoms worse? I imagine it makes the malar rash worse for some and other skin related issues but what about the fatigue, aches, twitching, balance issues that some people suffer from? Does the sun actually cause a flare, contribute or make it worse?
Sorry if I am going over old ground that some people have mentioned before. I would love to go out in it but I am not so sure this time around...
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trueman
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You might like to take a look at our factsheet about lupus and light sensitivity. I think that it might answer a lot of your questions. You can download it from our website here - lupusuk.org.uk/images/pdf/1...
I find that the sun seems to drain my energy and leave me more tired, and if I'm not careful I get itchy rashes and a malar rash.
However if I cover up, wear a wide brimmed hat, good sunglasses, and plenty of factor 50+ AND try not to be out in full sun between 11 and 3 I can cope. However I still tend to feel more tired when it's sunny.
It is wonderfully hot and sunny in my little town right now. Everyone out enjoying the summer days we wait all winter for. I use to just love it, would be out all day soaking it up working in my garden. Now - I hide in the house, it is +35 degrees out there. I have been feeling weird for the 4 days since it started - intermittent nausea, headaches, dizzy, body aches, head feels like it is burning and just don't feel good. Don't feel really ill or have anything serious to complain about, just nasty. The sun makes a big difference to how I feel and we are not as good friends as we use to be. Be careful out there trueman!
Don't forget guys, diffuse sunlight through windows can also trigger lupus to be active so always wear your factor 50 indoors as well as outdoors. My GP gave me that tip. He is also a dermatologist.x
Hi;)) before my illness was diagnosed I spent 15yrs wandering why everytime I went in the sun I became unwell sometimes for weeks after exposure ,but as we are beach lovers just dealt with it,however now its total poison,it makes me so ill,lymph glands swell,neuro problems worsen ,I walk like im drunk,im dreading the heat wave but my family love the beach ,im sure I will try outside only to be reminded I shouldn't be ,but the depression is getting to me for being housebound,take great care
Hi brave. I feel exactly like you.. A drunkard! It's horrible not knowing why as well. All sorts running through my head.. Wondering if I have had a stroke now! Perhaps it best to stay out sun and take precautions even though I have no idea yet if my issues are Lupus related. Pointers are definitely heading that way so much I'm convincing myself I do. Need to ready myself for going back to the drawing board or in other words 'it's all in you head' route if auto immune results come back negative Hope you stay sun free as much as you can without getting too much cabin fever.
its a process of elimination,keep pushing ,im still pushing ,15yrs on ,gone from ;M.E to fibromyalgia ,sjogrens and now mild lupus/connective tissue disease and.....possible dysautonomia,the neuro symptoms are the ones I really struggle with ,my mum had M.S and sometimes I question if im heading that way ,although my pattern of ill health is different from classic m.s.i wish you well and feel how hard it is having kids to care for also ,good luck x
Hi all thanks for the advice. Im guessing I could experiment then.. I will take precautions but tempted to experiment and see if it does make me worse. That being said, haven't recovered from last onset of sun if that is what caused all recent problems. My balance is just a nightmare. Now haven't driven for 3 - 4 weeks really. Developing a fear of leaving house because feel and look like a complete plonker walking. I love the sun as well..
Oh well. Looks like me and the sun are probably no more for now. Appreciate the feedback. It seems that the sun can make you feel worse and not necessarily on the day of being in it but also weeks after
I am sensitive to the sun but particularly heat - even when not sunny. However I still go out. Long sleeves, a hat, lots of water and staying in the shade (as much as possible) is the answer for me. I am unable to use sun creams because of the many chemicals in them - but have found that organic coconut oil (I use Bionas) helps to prevent redness and aloe vera gel (I get mine at Holland & Barrett) is cooling, so helps to avoid heat'bumps' that I get so easily. Showering on coming back in helps too - also against getting fatigued. Keeping a 'weather' diary may be useful. Good luck. xxx
Explains a lot too....looked like a cooked lobster when I got back from the chemist, literally two minutes in sun, but noticed it getting worse even with tinted windows of car. Also explains why I've been feeling so bad, my living room is bathed in sunlight all day...I now sit in a corner at the far end!!! Mentioned to the GP that I was feeling like a troglodyte...he burst out laughing and said he'd not heard that term for years!!! I laughed too I add, but at least he was able to understand the extent of my issue, especially living alone too.
Also means I can't look out the window and world watch....unless it's dark!!
Does it also make you feel like your skin is alive? I've had that for a few days...
Like the idea of a weather diary....just line it up with all the others...
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