Sun shine : Hi all, was diagnosed with lupus about... - LUPUS UK

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Sun shine

KarenC profile image
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Hi all, was diagnosed with lupus about 18 months ago all the symptoms aches, fatigue, mouth and nose ulcers, positive ana and other blood results. Since diagnosis have avoided the sun like the plague. A couple of weeks ago I was doing a bit of weeding in the garden and got sun burn on the back of my neck. Immediately thought of no another flare to come, I was just getting over a really bad flare that put me in bed for a week after moving house. No nothing, for the last couple of days I have been in the garden and noticed my hands and elbows that were exposed to the sun feel so much better. I am very careful because I suffer really severe headaches so always have my big hat and sunglasses on. Just wondered if any of my fellow sufferers have found the sun shine helps. Take care everyone keep as well as possible xxx

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KarenC profile image
KarenC
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Ilse70 profile image
Ilse70

Morning KarenC. No I try and avoid the sunlight at all times. I don't like getting sick. Today is my first day of feeling better after a very bad flare that had me down again for nearly 2 weeks. I was diagnosed last year November after 3 yrs of misdiagnoses. Have a Blessed day. xxx

pjsmith0700 profile image
pjsmith0700

Hi karenc. ...I totally get what your saying...although I can't lay in direct sun if I sit in the shade I feel better...think its the warmth...I wouldn't risk direct sun because it makes my rash worse and I get terrible headaches but if I take care and apply plenty of factor 50....I do feel better x

willow80 profile image
willow80

I have just been to China where the temperatures were 28-32 degrees Celsius. Each day I would rub in factor 50 and wear a big hat and glasses. It was fantastic. No mouth ulcers, no aches and pains. I have never felt this good.

I did wonder if it was the food (dairy free-didn't eat bean sprouts!) but also the sun seemed to be lacking in humidity.

I know that if I had been in the sun in Europe for this period of time, I would have had symptoms.

Hope this helps

Happy gardening.

Hi KarenC, I was diagnosed 18 months ago too and I am doing exactly what you have in the garden (no hat though as I don't think!) also I went to take the dogs on a walk to the beach (very slowly as I can't walk anywhere at normal pace) in the sunshine with no hat (again I forgot) - I did catch the sun on my face and I worried afterwards. the next day I was exhausted! My legs were so painful (only because I'm not used to being pushed, I must have walked only half a mile) but I was so happy because I did things (weeding and walking the next day) that I haven't done for 18 months! I do listen to my body only because it won't do what I would like it to do so I have to stop. The sunshine was fantastic and I would do it all over again! 😀 really hope you are able to do this regularly and it keeps you smiling like it does me, it's worth having bad days just for the good ones! X

KarenC profile image
KarenC

Hi all, thank you for the lovely replies, think I am just going to enjoy feeling better and not question it, I am starting methotrexate injections soon because the tablets made me so sick so going to make the best of the next few days. Xxxx

AnnNY profile image
AnnNY

I have had this, but it seems to depend on how bad my disease is. If I have mild disease and am feeling very achy, I used to be able to sit out in the sun for a short time, and in the evening I felt like I never had a pain in my life. But if things are bad, the next day I'm on the couch in a ball of pain. There are some studies way back that a certain type of light can reduce symptoms. But if you get burned you may be in for big trouble, so please be careful. Use your sunscreen and good clothing. The first time I had pain was after I had burnt myself to a crisp, before I knew anything about lupus--and I have had pain ever since.

kimc profile image
kimc

No Sun for me at all even 2 seconds, I will swelling, red, itchy and fatique for a month, I'm a super sun sensitive. I only can look out the sun from my windows and open all my widows or go outside without cover my body 20 min before dawn.

To hear some of you can enjoy out on the sun, I'm happy for you :)

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