how is everyone doing in this weather with lupus

hiya just wondering how everyone is doing I know I am keeping myself indoors to stay away from sun I look white but I want to look white than hav flare up n anyone got any tips on helping joints wiv this heat coz its make me hav pain everywhere all in hips back arms n legs I know staying out of sun but the warm still getting to me

25 Replies

  • Hi you know I have been so worried about going in the sun this year that today I had enough wanted go to the garden centre and planted my flowers. sun block. ..put a hat on eventually and I was fine no itchy arms or neck face a little red...... and I had a good day. ....though my back wouldn't say the same. ...take care. . Xx Uzi xx

  • Also fed up with it and deciding I can't live my life in fear of failing kidneys... Long sleeves, long trousers, wide brimmed hat and Factor 100... walked up to a street party in town and stayed 2 hours in the midday sun. Was ready to come home and rest after that.... my skin feels fine, but lets see what happens tomorrow.

    I know it's massively risky. My skin has been ultra, ultra sensitive since the chemo last year - and my rheumatologist says the skin can be the driver of everything else in the body. But I have stayed indoors for weeks now and I am sick of it!

    So there!

  • Went for a drive and had sunday lunch out! An hour later proceded with headache from satan then to top it off nicely Lunch re appeared if you know what i mean?

    Now lying in bed in the dark trying to get some ease from pain in my gut from wretching for so long.

    Dont know if it was the heat today or just dodgy food but not had a good day at all and wishing i had just stayed in.

    I think all in all it makes sense to keep out of the sun in the middle of the day at least when its at its hottest.

  • I loathe the heat...but I work outside so I have to grin and bear it.. I have to sunblock up ,wear my hat,and try not to keel over!really should find a new job..this weather isnt helpful if you've got lupus! find a cool bath when i get in helps my weary joints,sudocream for any really itchy patches on my skin,benovate for my itchy scalp and radio 5 live help me get through the day!take care ..Redfive

  • Hi Redfive you mention an itchy scalp! I have had this for a few days now, didnt know it was another symptom, would like to understand this more if you can help at all?

  • Hi Crankyme, I have DLE lupus and find in hot weather my scalp itches much more than dermy gave me the benovate cream to stop the itching as I had a tiny patch with no hair.It was the dermy who also told me that the heat made it worse,living under a hat helps but find that sweating under the midday sun in my gardeners hat can make the itching with me it is defo a sympton of this twisted illness!hope this helps..Redfive

  • I am hating this weather, if I go outside even covered up and with sun block on, within about 10 mins I feel like I'm going to collapse. I struggle to breathe and my chest feels tight.

    Even if I stay indoors my legs, feet and hands swell up, I'm nauseous all the time, shaky and feel really lousy.

    I can't wait for autumn :(

  • I know the feeling already playing havoc with me and has sent my wafrin levels all over the place, gotta go back to hospital today for a blood check, headaches pain bloods all over the place, love the nice weather but can't sand the way I feel with it

  • felt good yesterday at work finished shift then stood waiting for taxi in sun, pain shot up in joints and felt like poo.. don't like this at all, today still ankle and knee pains and a little swollen but am on annual leave so am going to do what I need to do no matter what :P

  • i went family BBQ yesterday ankle were swollen slight rash on arm witch was itchy and my scalp was itchy , got bad head and eye today , im like alot of u fed up with looking at four walls . ive had three test that have come back positive for SLE im seeing Rheumy tomorrow so im going to try and get an answer !

  • Half an hour with sunblock followed by severe headache and wheezing snd joint pain. On the positive I will have some Vit D for once!

  • This weather is tough on us, but fortunately (there are some benefits to giving up work) I can choose when to go out in the sun and avoid it more than if I was routinely going to work etc. So yesterday, despite suffering swelling and really painful joints - I invited family over to watch Wimbledon final, with a light lunch followed by strawberries (corny I know) we all sat indoors and watched the brilliant Andy Murray achieve success for the whole of the UK!

    Had a lovely day and tried to tailor our activities to remain indoors and avoid the sun as much as possible! I'm doing my best to remain positive and am going away to a UK cottage holiday on Friday and am downloading lots of books ready to sit and chill and relax - sorry guys, but right now i'm really happy (despite the dreaded SLE) and trying to love life as much as I can.....


  • Out of all the bloggs I read yours is the 1st positive one. Well done you. I have loads of pain. Itchy skin. Swollen ankles etc. But I dose up on pain killers and walk my dogs groom my horses {cant ride at moment} and try to live my life. Has anyone tried Swimming it so stops the pain for a while and eases the joints

  • Oh I am SO LUCKY, the sun helps me, I don Not get joint pains, having said that do 'cream up'.

    My Lupie Dr. thinks it might be down to my French/Italian heritage, my skin is sallow all the time - well I just look mucky!!

  • lol....that made me smile xx

  • I too don't suffer (at the moment?) with any effects of the sun - in fact, I'm convinced it actually helps me be more positive, happier and smile! x

  • I spent too much time intbe sun on Satyrday. Result - tired out but the worst bit was the intense itching. My feet and thighs were unbearable to touch. Anti-histamine helped. Tried some weeding yesterday morning and stoppedbecause I got dizzy. Learned a valuable lesson. Covered up and stayed indoors for tbe rest of the day. Slightly hungover today after over doing the tennis celebrations. ??

  • When I go out in sun I wear long sleeves and trousers, wrap a big scarf around neck and put sun screen (factor 15) on face and hands.

    I always wear tops which have quite a high neck not the low cut scoop or boat neck ones which have been the fashion for the last few years. I live in the North of England and I don't think the sun is really strong enough to make me ill here. However I would never sunbathe or stay out too long in it. I do prefer the warm weather as I don't have to bundle up in coats. My muscles are not going into spasm from the cold like they do in winter. I find wearing coats uncomfortable and have trouble getting my arms in the sleeves and fastening the coats up.

  • I totally agree with you. The sun we can keep out of but the. Heat is another matter. I try to drink lots and lots of water and other cold (not iced) drinks which does seem to help with keeping the pain away.

    Keep well.

  • I kept out of it yesterday, watched a bit of Andy Murrays match and fell asleep all afternoon, the heat makes me extremely tired and I burn easily so only take short walks when the suns high and very hot...

  • I am staying in today away from sun once agen I was out yesterday for ten mins then went in but felt hot sweaty so got freezing shower tht helped lotsss then today staying in has all my joints are swollen but fed up of staying in but if I go out in sun I get pricky heat type of rash n it hurts n ichys like mad so I always stay in from sunny but akward when u got two children tht want me come out but I know if I do go out to long my flares after second child r reli bad its like I hav sum gd days then I flare up n its bin like tht nearly year now n my docs not sure if its lupus or not I reli think it is my lupus but not gd in sun but not gd when its reli cold too why can weather not just b normal I like it when its not to warm but not to cold or raining it will nice to hav lil sun but with cool breeze

  • When doing my bit of gardening I wear a full onesie set of workman's overalls, hat and sun block. Looks pretty odd in the middle of summer.

  • not even been out in the last two days and it's exhausting me, increasing my joint pains and headaches. I used to be a sun worshiper, out in the sun at every opportunity. Since lupus, I avoid the very hot sun like a vampire.

  • hi, to be honest I am not too bad in sun on my body as long as I plaster my face in factor 50, it leaves me very tired though but got low vit d levels so try to get some sun . it seems the older I ve got the more I am able to tolerate the sun. ive had lupus for 29 years I am 52 now and at first could not tolerate it at all x

  • Hi I am a bit of a walking sauna in this weather as I am out and about as much as usual wearing my usual long trousers, long sleeved jacket, gloves, scarf and something on my head and getting most peculiar looks then melting when ever I get home again. I have dressed like this for a couple of years so it would feel odd if I didn't as I do it all year round but it is so much more unpleasant right now -a good antiperspirant and deodorant and a light dusting of talcum powder are my secret as talcum powder is my best friend at night too it makes cotton sheets feel like silk if you just give them a very light dusting and they feel cooler - poor man's silk and a good night's sleep.

    I hope it can work for you and help make you more comfortable the secret is not to use too much

    Madmagz x

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