It’s in the news again that the UK is going to have another heat wave (it’s been 21 degrees today where I live)
All of my colleagues and family are super excited about it but all I can think about is how much grief it’s going to cause me!
Does anyone else have any sun-related issues?
Mine include rashes on any exposed skin and exacerbated joint pain!
- (Still patiently awaiting a diagnosis on the Lupus Consultant’s waiting list)
It has been above 90s( >32c ) for quite a bit of the last month where I am. In the us a heat wave is three consecutive days above 32c and are a common occurrence from June through September so I have gotten use to it after a lifetime of experience.
Tips that help me is to wear sun protective lotions, hats, uv sunglasses and clothing. I mow and exercise in the early morning or evening and drink plenty of water. I have a pool that presently is 85f ( 29.4 c ) so it is not as refreshing as I like but at least allows me to get exercise safely during the extreme heat advisories we are in.
Sleeping in extreme heat is the pits. We have central air but often with the hurricanes in this part of the world we have the potential to lose power for long durations. Last weekend my area was in mandatory evacuation for a direct hit hurricane but luckily it changed to a tropical storm with little damage and flooding.Last summer with two massive storms we were out of power for over two weeks when the average temps were well above 32 c and 100 percent linen sheets were a godsend! A cold shower before bed was a must and again in the middle of the night if heat wakes you.
Good luck!
Hi SGRC and greetings from Australia! In the western parts of Sydney and beyond, we are often experiencing “heat waves” of above 40 Celsius in our summer season. I experience very much what you describe with high temperatures. I flare with severe muscle pain. I have trouble keeping my body temperature regulated. My skin itches and pains wherever the sun hits it.
I live in an area on the intersection of where three major fires hit west of Sydney in 2018. We evacuated twice, with lots of kids and animals too. I have not been able to get rid of the lupus related sinusitis since that time, and my lupus is much worse since this time.
So in answer to whether I fear hot weather, absolutely YES. Keep your body protected from the sun, and stay cool (air conditioning is best). I take a vitamin D supplement to make up for avoiding the sun. Wishing you all the best, and I hope the weather is good to you in the UK. I’ve heard Europe is getting very high temperatures this year.
No not as much now.yes im photosensitive and once the penny dropped that I really do have take all the precautions things have improved.sun on any part of your skin will trigger rashes in your usual place so it means covering up head to toe,wrap around sunglasses,wide brimmed hat,lashings of factor 50 and factor 50 lip balm.shade or indoors too.if I'm out without covering after 30 mins i get a bad head, my eyes sting and my hands and feet flare.im not aware we are going to get an intense heatwave ...they are rare up north where I am anyway. Never thought I'd wish for a cloudy cool summer.its UV that is to blame so don't be fooled by cloudy days UV also comes through windows and from lightbulbs
P.s its the same all year btw even in winter factor 50 ,hats and sunglasses.
Hi SadGirlRaceClub. Sorry to hear this is making you feel fed up.Sadly us Lupies have to just do all we can to prevent rather than cure. I have horses and now ALWAYS wear long sleeves, trousers and hat when out during 10am to 4pm. I seek the shade at all times. Like the other comments try and do the exercise early before 10am. I slather the factor 50 on any exposed skin - don't forget your ears!
I do find extreme heat helps my joints but makes my whole body feel heavy and fatigued so it's a kind of positive.
I was only diagnosed in the Spring and have to keep saying to myself pace yourself. For example if I have some gardening to do which I would have done in half a day I now do it over three one hour stints. Frustrating yes - But the result is less pain and flare.
It is hard as people around us chat away saying how great the hot weather is. Maybe you could have a gentle chat with your close family and friends and simply remind them that you do not look forward to the hotter weather and you would like some support with this please? Hopefully, it will give them a heads up that things are different for you.
Keep on smiling fellow lupy. We are all here to help when we can.
Take care.🌻🙂
21 degrees? It's in the upper 90s here and very humid all you have to do is step outside and you start sweating and catch on fire 🔥 lol it won't cool down until October if we're lucky. So thankful for air-conditioning as are my cat and dog.
High temperatures and humidity are definitely a concern for me. Our air conditioner broke and my body reacted just like I was exposed to sun. For 3 days until the air was fixed, I could barely function. So glad when it was fixed.
Healing hugs.
Hi, another Autralian here, we frequently get temps of over 40 degrees Celcius here and it stinks! I’m not sensitive to sunlight per se, but I can flare BAD in heat, especially the indoor, stuffy kind of heat. I get dizziness, nausea, weakness and fatigue almost to the point of passing out. I much prefer the cold! I combat this mainly by wearing layers everywhere I go so I can strip down to sleeveless if needed, but even that sometimes is not enough. I often get incredibly anxious in the warmer months, knowing that as soon as temperatures start to climb, I can rapidly go downhill. If I’m at work when it happens, I sometimes have to go home sick because I become non-functioning.
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