Flipping heat

hi just thought I would moan about this lovely glorious sunshine ! Not ..i find it unbearable if the headaches don't get me the sore feet gets me and the lovely itch that feels like you have crawling skin ..its so good to wear long sleeves long trousers you look like a monk ..and here's everbody else in shorts vest tops ..then of course the tiredness hits you its such fun having lupus and all the wonderful mysterious side affects to it .sorry for my wings it just gets you down sometimes ..xx

16 Replies

  • Oh hunni you are defo not alone... i absolutely struggle with this weather.. my skin has broken out in painful blisters swollen ankles fatique the works..

  • I, too, am very, very affected by the heat - over here in the northern US (well, all of the US at this point) it is in the upper 90's F (32C+)and my air conditioning is very limited, so it's easily anywhere between 80F-90F+ in my room at any given time. And judging by the forecast, it'll easily hit 100F (37C) this week. It makes me feel like I have the worst flu, awful fatigue, joint aches, and head aches, and the swelling! Not to mention I become quick to snap when the heat is so bad. It's just unbearable. So I'd just like to commiserate with you for a moment. Hoping that it cools down for everyone soon! Try to stay cool and remember to hydrate, hydrate, hydrate!!

  • Whinge away. It's torture. I really wanted to shave my hair off yesterday. Fortunately I never go far from home and my eccentric long loose linen Morrocan robe with large hood is not often noticed.

  • I know the feeling all too well! I have very, very long thick hair and I often feel the need to just shave it off completely! It's too bad hair is something of a hobby for me, otherwise I might! But that robe sounds wonderful. I may need to invest in one! I have a floor length, full lace kimono that works well for me in the sun, but it is lacking a hood. And if anyone wants to judge what we wear, they can go right ahead. They're lucky they don't have to dress in certain ways and think about these things!

  • I really suffered the last couple of days.mainly what I call a muddly headache,feeling sick and joint pain and swelling in my hands,spent most of yesterday laying on bed with fan on.Feel really fed up with it especially when you see people enjoying the good weather.Sorry moaning feeling very negative about living with lupus at the moment.

  • I've not been officially diagnosed but I have a hard time tolerating the heat outdoors and in the sun. Walking even slowly my hands and knees and feet swell some. Once I sit and my body cools off the swelling goes down. Why does walking heat my body up so much. Blah blAh blah

  • I agree. It's one of the things I really hate about lupus. Apart from feeling unwell, it also makes me feel like a bit of an alien! People look at me in amazement when I say I don't like the heat. I never wear skirts, shorts or summer tops so that makes me feel selfconscious - oh and of course always having to wear a hat. :(

  • Hi Lisette, I have always worn long dresses and skirts. Well for many years anyway.I feel too self conscious to wear trousers now because of my weight. I do wear t-shirts with a cardigan if not too hot.Long sleeved t-shirts as well. Don't go out very often unless I really have to such as hospital appointments or gp appointments staying in the shade as much as possible. I ge5 a lot of headaches and migrains, especially in the heat . I have yet to pluck up the courage to get a hat! Lol So I understand what you mean. Best wishes, Fionax

  • barbdockeray@


  • I know what you I feel the same way. I live in Miami, Florida so imagine.

  • I can not imaging living in the USA with the heat you all have to tolerate. I've been suffering the last 3days with the mini heat wave we've had here in England. My joints are swollen, I feel feverish & spent most of my time sleeping through fatigue & feeling like I've got flu. Hope it cools down soon for all of us luppies. ☔😉

  • Oooh! I am embarking on my bucket list no.1 trip in a fortnight, to Calcutta! I think I might just have flipped over into madness, as I cannot bear the heat...but...I lived in Calcutta in my youth, studied music there and spent the last days of living with my sister in the house. She married in Calcutta and sadly died at the tender age of 22, so it is a nostalgic journey to a city I loved and which shaped my future career in opera. But how will I cope? I am armed with sun cream, parasol, mosquito repellant and a walking stick, and I intend to obey the siesta hours of afternoon. But, does anyone have any extra advice? I feel for you folk in America with the high temperatures..just pray that I survive the weather and manage to enjoy my sentimental journey! Air hugs to all...I will post pics of my trip on return, probably of a plum complexioned, sweaty individual! 🔥🔥☀️

  • Wishing everyone cool thoughts....especially those in sweltering heat....I have been in hiding at work and then rush home covered of course....weather is breaking abit where I am and I am blessed with a sea fog rolling in now....yah

  • I know just how you all feel. This weather really is the last straw for me too. Since feb i have had a really bad flare, bowel obstruction then the runs for ten days and shingles twice!. Lupus doesn't take prisoners it makes you feel awful and kicks you when you're down. Sorry to rant just fed up and hate this weather. Give me a rainy day in autumn any day. Love and hugs to everyone. X

  • I do feel for you all - I think I'm lucky in that I have 'quiet' lupus (not mild!) - I make sure I sit in the shade - hard shade, not under an umbrella - at regular intervals - and drink/eat what local people have as they are used to managing heat. That means in Turkey, I drink chai and lots of water (havn't yet been brave enough to try ayran) and eat fish of the day, salad and rice/bulgar wheat. The best bit is eating sweet things such as baklava!

  • I am with lupus from last year. That very frustrating for me that need to avoid sun in such nice weather and struggling with swelling fingers of hands but I would give advice for all of You,because felt very fatigue and tiredness but I see from couple of weeks I feel better. I started eat garlic because it's good for immune system and don't feel so much tirednes. I wanted to share this information because You could help for self feel better and stronger.If don't like eat fresh garlic you can buy as supplement in H&B shop.

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