Discoid lupus & RA

[RachelD1972]

Hi all, hope you’re all doing okay? I’ve had DLE alongside my RA for about 4 years (RA 12 yrs).. it’s currently hot here in the UK. Does anyone feel generally ropey in this weather? Glands up, headachey, very fatigued? Just in general “off”? My joints are also playing up but my last rheumy app a few weeks ago I had normal bloods which is a first. I’ve had a couple of random days this week like this. I know Dle is meant to be just skin involvement but wondered if anyone else ever feels like this in the heat? It maybe the RA or even meds + heat x

[Spanielmadlady]

It's not quite so hot up north but I do have a few off days and I suspect its connected to uv as they are very high just now.I know it is for me.if you dont do so already cover up head to toe,factor 50 all over ,big hat,sunglasses and stay in the shade.if i spend too long outside i have 2 or 3 bad days with headaches,sore joints etc.

[RachelD1972 in reply to Spanielmadlady]

I’ve been out for early morning walks and that’s about it & use spf 50 daily. Live in a flat with no garden. I think I’ll up my water intake and see if that makes any difference. I don’t think the heat at night helps either as then even more knackered than usual each day !

[Spanielmadlady in reply to RachelD1972]

No heatwave here think we only managed 16 degrees today.

[TeaandToast94]

I’ve had consistent headaches most of the last week (assumed it was down to doing community visits in a hot car etc… not always able to seek shade at work).I’ve been trying to drink plenty but no joy, and then coming home and falling asleep on the sofa. Yesterday my joint pain was awful also. Definitely think that the heat has something to do with it as it also makes my chest feel worse.

Take care of yourself in this weather! Hopefully we’re in for some cooler days soon

[Spanielmadlady in reply to TeaandToast94]

We must be the only ones who wish for a cool cloudy summer lol x

[RachelD1972 in reply to TeaandToast94]

It’s not much fun is it. I’ve looked forward to summer after shielding and now feel like 💩😂. Hope you feel better soon x

[PositiveT]

Hi all. I am in the South and have noticed the warm weather has affected me. A little tip in case you have not tried it - wear a hat and sunglasses whilst driving. It might look weird but I find it helps. Also if you have a.c. use that and keep the windows shut as it has been proven that you get more uv rays with the window open believe it or not.Take care all. 🤞😎

[Krazykat26]

Most definitely yes to your question Rachel 🤗 sorry to hear you're suffering too. I keep my windows shut n I have UV protective film on the windows that need it..also shutting the curtains is good to keep the room in shade!!

Last year I invested in a fan and a cooling towel..money well spent..especially the cooling towel!! Its like a scarf..u wet it n then shake it n put it round your neck or head or any other hot bits n it cools u down!! It gradually warms up n then all u do is take it off n snap it again n it's goes cool again..so u only have to wet it once!! It's a fabulous bit of kit n it really helps me 🌈😽😽xx

[Hidden]

Hi, I have STILLS (RA) not lupus but you have described exactly how I feel on hot summer days. I don’t have a solution but avoid the heat, cool baths, hat and sunnies and afternoon naps all help x

[latincarib63]

I hope you feel better soon Rachael. I have DLE, and yes I feel exactly the same.. noticed in the last couple of days my left leg has swollen, I have noticed my energy levels has dropped to. I try very hard to avoid the sun but it is difficult.

I have had isues with my skin since January so not syure what is triggering the rashes on my body 😉. Try to stay cool (difficult at present its about 29 in london) stay hydrated and covered up in the sun.

Wish you all the best .

[Cas70]

I have Discoid and Sjogren’s and it takes it out of you ! I am exhausted, having aching joints and red hot feet - it’s just a struggle every day but I try my different remedies and rest whenever possible. It’s all part and parcel of this rotten illness I’m afraid.