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LUPUS UK
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Lupus and Sunlight

I know sunlight is a huge trigger for lupus flares, and I do use sun cream regularly (sunsense). But, is it just me, or does sunlight actually make my lupus better? My body reacts very badly to cold weather, aside from my Raynauds, I feel a lot more pain and swelling in the winter months. When it’s summer and the sun’s out (which barely happens in the UK), it’s as though the stiffness in my bones melt away - it makes me feel much better. Maybe it has a lot to do with my Vitamin D levels, and maybe this is just specific to me because lupus does vary a lot from patient to patient. If anyone else feels the same please reply :)

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For me in the winter my joints are worse and the rainods can be very bad and I still we’re sun screen in the winter when the suns out ,in the summer I still get the joint pain just not as bad but the sun makes my fatigue worse and the skin on my ears goes all dried up and scaled so it’s factor 50 and a fedora hat for me

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I always feel much better in the summer. Think a lot of it is psychological . The sun & the warmth cheer everybody up.

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The best I felt was last yr my wife took me to a spar thought I was going to hate it but it was brill the spar had a high humidity and the steam room arrrrrrrrthe steam room pain free for as long as as I could remember and it lasted for about 5/6 hr after leaving felt rather normal I think everyone with lupus MCTD should get a spar day on prescription 😃

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does your local swimming pool have a sauna ? mine does. perhaps you & your wife could try that ( I get reduced membership of £17 a year due to disability )

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I thought it was psychological at one time, so I decided to test it, with a week I was becoming weak in the legs. I was doing exercise at the beach with a friend (sunny side) with in two weeks I was in the hospital for five day's swelled up legs ,feet , thighs, muscles shutting down.. This happened in 2016, I was diagnosed with SLE (1997)..I had a flare or two over the yrs., nothing too serious as this, I haven't fully recovered yet. In fact I think it's gotten worse I have a walker now. Sorry for the long story, the point is to be careful, keep using sunscreen , don't take the sun light for granted something about this dis-ease and the sun just don't mix..

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It an interesting question & we are so individual, I say sunlight is a natural part of our development through the centuries, so it is well with all our makeup to benefit from it (here comes the BUT).... Our bodies are no longer reacting like everyone e!se's and light can trigger flares for many of us.

I think here, sun & warm come hand in hand so our bodies welcome the warmer temperatures, especially as we have milder summers ie lower temperatures for less time...

For me at the moment winter is a welcomed break from hiding from UV, I still cover up but that normal in winter & I am not so noticeable & feel cosy instead of overheating from layers. I take vitamin B and admire the light, sadly, as I have SCLE & if exposed can get a rash all over & if I didn't take autoimmune meds I would be very poorly....along with sjogrens I just functioning.... I only hope some of us may not react as badly to UV, we have plenty of medical issues as it is... This is where we need to understand our bodies, I know UV can cause me serious problems haven't tested it don't want to push my luck so as Ian mention it 50 factor & hat for me too... 😎 ML

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I love the winter months it means even though my bones hurt more I can leave the house, iv lost all my pigmentation and summer is a nightmare I just don't go out if I can help it because I know it will result in a flare, we are all so different. If anyone knows wear I can get some cheep sun safe clothing please let me in on it as the prices are out of this wold. Come on Lupus give us a break.

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Hi, Maggie. I’ve just seen your post so sorry for late reply . Try Amazon for rash vests, I got a couple there last year that weren’t too expensive. Also the American clothing site Landsend is now available in the uk and they often have sale days. Being American their sizes are quite generous so don’t order a size up as is normally advised. Hope this helps.

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I feel better in the summer when it’s warm, not hot though, as I’m as stiff as a board all through winter. I can’t cope with freezing conditions. Can’t stand it too hot either, between 65 and 70 suits me. The sun hurts my eyes, even in winter or bright cloud so I don’t sit out in it often. I’ve got cmt and arthritis and I suspect lupus, also raynauds.

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I love Spring and Autumn. The best of both worlds. I Summer I cant go in the direct sunlight at all now and it has got progressively worse. I wear sunfactor 50 all year, the heat makes me more fatigued but my mood improves. During the Winter I feel low and my bones suffer but I can go outside and have more energy. S again Spring and Autumn it is for me.

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The sun and cold weather has always been the devils curse for me. Spring and Fall find me most comfortable. My fingers and joints are stiff in the evening and morning. It's impossible to pull my covers up while sleeping because I can't bend my fingers. I literally cup my hands together over the comforter in order to pull it up.

I was diagnosed in 2004 with fibromyalgia, osteoarthritis and lupus in 2011. Later the lupus diagnosis was reneged. I've never had a normal ANA with the highest reading 57. 20 and below is normal. I'm chronically low on my white blood cell count. I experience chronic low-grade fevers, and dry eyes. Lately I've noticed an out-break of little red bumps on my torso. If I scratch one it forms a small scab. When I put lotion on after a shower they burn. I get sores in my mouth and gums. To date my rheumatologist doesn't know what auto-immune disorder I have. Can anyone else relate to these symptoms? I have a follow up with him in a couple weeks. He'll order a complete lab work-up as it's been months since my last work-up.

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Just found your post and I feel for you. I went through all those symptoms you described and more and it took them 7yrs of misdiagnosis, undiagnosis, rediagnosis then misdiagnosis again before they finally got it right. The test that determined my real and final illness were...ANA with titer, complete cbc, sed rate, compliment 3 and 4, vitamin test, urinalysis, anti smith test and cmp. But it came almost too late. I almost died before they diagnosed me and that only happened after i lost all of my long pretty hair, my fingernails and toenails discolored, my spine and joints were so inflammed it caused me to become immobile, my skin suffered severe lupus legions and i became severely nuetropenic and leukopenic which elevated my bp my heart rate and my temp to uncontollable levels for 9 days straight. I was placed in icu for 2wks because my immune system had shut completely down and anyone could pass anything on to me that would more than likely kill me faster. Im very blessed to be here right now and if I had gotten those test done years earlier it could have save myself a lot of heartache.

My advise to you is stay on the doctors and force them to hear you and run all necessary test to eliminate any illness remotely close to an autoimmune disease or diagnose it properly. Good luck and I pray your last visit went well. Take care and hang in there

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The sun protection is important and so are the outdoors and fresh air. Probably easier to achieve in the lighter months and definitely helps the vitamin D. Best wishes Kevin

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Hi Albrtna, You are brilliant! I live in Arizona which is one of the sunniest places on earth. We do have a few months in the winter time when it gets cold and rainy off and on but usually not for more than three or four days in a row. But most the time we have sunshine and warmth. I have to say I Dread the winter months because I am much more achy, depressed And all in all just don’t feel as well as I do in the summer warmer months. Also the sunshine makes your mood brighter, I was raised in a very gloomy place in the winter time and I feel so much better Since we moved to Arizona where the sun shines. I have to say I am out in the sunshine every day almost, during the year I love the feel of it on my skin, I’m very conscious not to overdo it because it does cause me to feel ill. So for me I think that not only is it the warmth of makes me feel better but it’s a sunshine in the skies that just makes you feel more upbeat and more optimistic. I feel so fortunate to live in a place it is very sunny all the time. So I don’t believe it’s anyone’s imagination when they feel better during the summer months. Some people get lights for light therapy because the UV light is important for to how we feel psychologically. I know we shouldn’t be subjected to UV light for any length of time though because it can make lupus patients flare. I, like you feel much more stiff when the weather is cold. I really feel for those with arthritic diseases live in the cold weather because I know how much more you suffer. If I could send some sunshine your way I would. Take care XO Nan

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We have had the coldest weather here in Alabama, than we've had in over 5 years. I agree with you, warm sunlight does not effect me as bad as this cold weather has! I have more rashes in summer, but I can move my joints and mussels!

I can put up with sunlight and rashes, better than I can this cold weather!

Tiras

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I find I feel better when it is warm and dry as well as Just warm, I do have sensitivity to the sun, so I try not to go out in it, but I get a similar feeling on a sunny day as if I was sat right in front of a nice warm fire. Perhaps that is why the summer feels so good, less pressure in the air as well as warmer?

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I wish I felt better in the sun...But I don't...saddens me

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I love the summer and when I go home to my seaside hometown, it's great. I rarely have joint pains, have so much more energy (possibly due to a better mood) and Raynauds is only a problem when I reach for the freezer!

However, I feel ill the day after even the slightest sunburn so I do spend a lot of time in the shade or under a large hat. Not too sure if I get rashes or sunburn because I'm very pale so I use high factor sun cream and tend to feel ill even after just a light face burn.

Summers where I live though tend to be humid so I much prefer Autumn!

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Hi Albrtna,

According to The Lupus Encyclopedia, “30% to 50% of people who have lupus will develop a rash due to light exposure, others do not. However, the lupus inside the body still becomes more active due to ultraviolet radiation exposure”. Using sunscreen regularly is a great precaution to take.

Yes, you are correct. Lupus presents differently in everyone therefore no two people will share the exact same experience.

To read our blog article on coping with light sensitivity please click here: lupusuk.org.uk/coping-with-...

Individuals can sometimes notice that weather changes can affect their symptoms. A large study was recently conducted about this subject and we are looking forward to hearing the results: cloudywithachanceofpain.com/

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omg yes the cold kills me even though i just found out i have lupus ive been living with it for years and the cold is the worst i just took a trip to the Caribbean and in two days i was feeling but better no cold no pain i loved it first time in a very long time i was okay then i returned to the cold and well you get the idea.

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Hiya!

I am completely the same, however I tend to be better in the sunlight abroad! I dont know if that's because I'm overly relaxed 😂

Xoxo

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