Just me needing the wisdom of all those who cannot deal with extreme heat. My on going symptoms of swelling, nausea, pain fog brain, IBS, tingling, Headache, Chest discomfort, and on and on, have me over the edge again. I need to balance myself, ground my mind and feel worth something here. You all have been so kind to me, We are in the 97-99 degree margins with storms coming from our south soon. But that will only add to the humidity. I am taking all the precautions I can. Drinking plenty of water. Yes filtered TAP water,lol, sorry I know that is a hot topic now. But, the meds and weather are not playing nice together. Any advice???? peace, thestorm😒
it is tooooo hot!!!!!: Just me needing the wisdom... - LUPUS UK
it is tooooo hot!!!!!
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thestorm
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•
Where do you live?
I can’t wear the heat, it sends my body into melt down .
I keep feet in cold water where I can. Of course less clothing. Keep your hair wet , that helps me loads. I’ve heard putting some pj’s in the freezer, not been tempted enough to try that one yet 😅x
I live in the north-east states, where the weather doesn't get this hot mostly until August. But mother nature has been tough on many areas around the world!! Staying in the north east was the plan to keep away from some of the heavy weather, PJ's in the freezer, I just may try that this year. We have AC, a blessing in it self, I am grateful for your advice. This type of weather does the same to me a tail spin, and when it lifts, I get really really sick. It scares me, I get very ancuse, greater anxiety, and so much more. Cool towel around my bad disc's neck. thank you Lisaou for taking the time to help. peace, thestorm
Your not wrong, Mother Nature has been a beast with the heat. Last year in the uk was awful 😖
I sometimes wonder if I’m the only person who thinks only a few months left of summer and so far this year it hasn’t been too harsh 😊
I can see the UK becoming big investors of air con in our households in the very near future.
My mum always says drink tea to stay cool, apparently the sweat we produce will keep us cooler, doesn’t work for me x
Hi thestorm 😊🌿🌸🦋
Are you in the USA 🇺🇸?? I’m in Michigan
Looking for tips to cool off without aircon???
Take cool shower. Place water in a half gallon carton container and freeze solid. Peel off carton and place in large waterproof container. Place a fan safe distance away (cord not possible to make any contact with ice or water) and point it to blow across your body not directly facing you.
Place another fan to blow out the window which will exhaust the hot air. You can also place cool water in a bowl and wipe down your limbs neck and armpits as needed to help cool you off.
Do the pinch test on the back of your hand. If a ridge of skin remains standing you’re dehydrated. The higher the ridge the worse your dehydration. Drink ice water is best. Avoid caffeine products and alcohol as they will increase the dehydration.
Avoid activities during the hottest time of day.
Take care. Hope these tips will help you.
Much love and hugs sent your way.
EJ 😊🌿🌸🦋🙏🤗💗😘👼🕊
Hi Honeybug, Thank you for all the GREAT tips!!! They are clever and sound great!! Yes, I am in the states, USA. N.Y. full south of the great lakes! How is Michigan? That is one state that I have not been to as going across the country when I was younger. How is the health care there? So glad to meet someone here. Please do not get me wrong, this hub is fantastic, everyone has been so kind, helpful and just out right great to helping me, and the posts, are all things we can relate to. I would truly love to be in the UK, or near-by, as it holds a special place in my heart, for my family was from there. How are you, and what brought you to this special hub. On your advice, again thank you very much. I do not drink alcohol. Stopped about 25 years ago due to my conditions. I do drink lots of water, but seem to always be thirsty. The Ice and fan trick is cool. Really COOL. And my siberian Malamute surly will appreciate it too. You are sweet to care. I wish you all the best and please post to me when you can. Nice to hear from you. Sending my peace, blessings thestorm😎😒😎
Hi thestorm 😊🌿🌸🦋
It’s been 102F with humidity much of the last 30+days.
It nailed me good yesterday.
I have blood draws later this morning.
I will answer you reply as soon as I can.
Take care. Wishing you and furbaby (give hugs from me please) a safe and cooler day.
EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊
The weather has been a beast, I live on long Island in NY. We get an ocean breeze which is a good send, but the HUMIDITY 😡 for me is the worse part. Just wanted to say high...stay cool
Hi Kizmetsoul, AHHH, Long island. Being there many years ago. Yes the humidity is a bear! May I ask how it effects you and your conditions? Thank you for your reply. Stay well and cool. sending peace blessings thestorm
Hi Honeybug, I am in Ohio. 🇺🇸So thankful that today I woke up and it was 66 outside! I cannot be in the sun for the first time in 48 years! I use to love heat, sun swimming and now I feel it is burning my skin. I had a rash that lasted a week and I itches so bad I caused bruises. I feel I have been taken over by aliens!! I also get this dark discoloring on my face when sun touches it. Waiting to hear from Cleveland clinic on when I can get into see a rheumy because the first young man had no clue, he was very young and seemed to just want to hand out meds instead of trying to help me figure out anything.
Sorry for all the blah blah writing, I’m new here and to be honest I have been in a whirl wind of what the heck is going on!
Hope to hear from you soon. Hugs from Ohio. Ps.... the love of my life was born in Scotland and we were just speaking of going. Hope I feel great when we go because it looks so beautiful in pictures.
Hi Sweetpeach 😊🌿🌸🦋
Welcome to the group.
Sooo sorry you’re suffering so much. I pray you get answers soon and the relief you seek.
I’m in Southeastern Michigan.
I too was so grateful to wake up to 65 degree weather today.
I’m allergic to everything outside so I’m a shut in but still getting sick with the 110 degree heat and humidity. It’s so hard on my conditions despite air conditioning.
I have bone on bone osteoarthritis in my hands. It takes a while to reply. I owe so many members replies.
Glad to meet you and have our first chat.
Take care hope you feel better soon. Abundant blessings.
EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊
Hi Honeybug, the weather pattern has given us a 1 day brake here, and I have been doing all that everyone so kindly suggested. As for you, on your last post did you have good blood work results? I am praying for you too. My conditions make it hard to type, and concentrate at times, so I am sorry I did not respond to you sooner. You want to here something ironic, my beloved dog Storm, the siberian malamute is from Michigan! He was born there, and we saved him. He is my rock, my companion, my secretary, lol, he makes this mess all make sense for me everyday. I hope the weather there will be kind to you, and everyone here in the hub. My son lives in the UK, and I know the weather there has not been too kind either. Wanting to go visit, but I cannot tolerate the long flight. I really would have to be in a coma for the trip. Beautiful places in the great UK. Skyping is my window to that world there. Sorry to ramble, just sending my care to you peace, blessings thestorm😊
Hi thestorm 😊🌿🌸🦋
No apologies needed for delayed replies...I’m late too. I have Osteoarthritis everywhere and bone on bone in my thumbs delaying reconstructive surgery so I have problems typing too.
I’ve had problems with accessing posts/replies having to sign in every time or blocked.
Thank you for asking about my blood results. No the news wasn’t great. It’s 10 months after my autoimmune disease reattacked my thyroid gland and for 6 months I was frozen and so exhausted and weak that I couldn’t do anything. I took increased meds for 3 months and this latest blood test show my thyroid had not recovered. My meds now increased again retest in 3 months. Also my kidneys are being compromised. Will retest that then too. I’m prediabetic and next blood draw will be comprehensive to recheck everything for my annual numbers. Thank you again for asking dear.
Thank you for your prayers sweetie. I sooo appreciate them more than I can say.
How wonderful that your furbaby Storm is from Michigan. I love the breed they are so beautiful. Give Storm some loving from me please. Isn’t is great that our dogs can be such little miracles for us. They frequently can do so much more than medicine.
I love dogs so much. But I will never have another one. I can’t care for myself very well now and wouldn’t deprive a pet of 100% of its needs. I know my limitations too well. So I send my love to everyone else’s furbabies instead. I get that fuzzy feeling and the smiles whenever I see pics of animals/dogs especially.
I’m sorry that you are unable to fly to the UK 🇬🇧 to visit your son. Yes Skyping is such a blessing as all our technology that allows instant chats around the world. As long as this hub is accessible/available I will continue to connect with the beautiful members here.
Sorry your son/everyone in the UK/world is having to deal with this global warming heat. It’s been that way here for most of June and July. This weekend the tropical heat/storms are here again. There have been 26 children left to die in hot cars this years. Just Thursday a pair of 1 year old twins were discovered in their car seats foaming at the mouth and dead. The dad was inside the hospital doing his 8 hour shift as a Social Worker. He is being charged with murder...about time parents are held responsible for such a tragic crime.
You aren’t rambling dear Storm. You are chatting and very welcome to do so sweetie.
You take care. I hope you will be as well and as painless as possible. Praying for cooler conditions for all affected by these horrific heat conditions.
Love 💗 and hugs 🤗.
EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊
West coast of Scotland, near the lochs at this time of year can be hell for some due to the midges. Incredibly beautiful but you get eaten alive.
I’m in Scotland where it’s warm now for us and I find that I’m drenching in sweat overnight despite all windows open. So can only begin to imagine what it’s like for you! Hope some of these tips from others help. I have none but wishing you inner cool even if there’s no outer cool to be found. Xx
• in reply to
Hi twitchy toes,
I think the heat adds to the fatigue problem many living with lupus have. We have a few cost effective things that work:
1. Fill a hot water bottle with cold water and snuggle at night.
2. Swap the duvet for a blanket, its much lighter, easier to move and much thinner but still gives the bedtime feel.
3. Viva SoCool cooling towel (on amazon) is great, run it under a tap then squeeze out the water and either wrap around your neck or place on your body, when it gets hot follow the instructions and shake it out to get it cool again... Great for hot days and long journeys.
The other posts from from the USA but as I'm in the UK I know these solutions work well for my wife and I.
Regards
• in reply to
Great tips thanks RR! 😊
thestorm• in reply to
Thank you RockinRic, great tips, appreciate them. I will look on line at amazon for that cooling towel. No matter where we are, on matter where we live, Lupus is the shared affliction that here in this hub, we can all share and be spared. God willing. peace blessings, thestorm✌✌
Krazykat26• in reply to
I just want to thank u for cooling towel tip..I ordered one n was using it today...it's my new best friend..fab bit of kit!! Xx
• in reply toKrazykat26
Your very welcome and glad I could help, their sooo simple but amazingly effective. No doubt it will be really handy this week too with the high temperatures on thier way.
Regards
Rich
thestorm• in reply to
I too have received the cooling towel, Love it! Thank you sooo much for taking the time to post, it helped lots of us here. I posted it to the Fibro hub because there, people are struggling with the same things, and it spread your insight to many more. Its good to share. Thank you RockinRic. peace, blessings and cooling down, thestorm
I had did the frozen hot water bottle last night..amazing..kept me kool till 4am..got a good night's sleep xx
thestorm• in reply to
Thank you Twitchytoes for the cyber support, I wish I was there!! Truly love the UK. My son live in Cornwall. Hope scotland is kinder to you. Beautiful place!!! Love, blessings thestorm ✈✈
Run cold water over your pulse points. The easiest place is the wrists. With your palms facing up run water over your wrists.
A wet towel on the neck will help and feet in a bowel of cold water,
Very loose clothing helps. I keep a few very oversized t-shirts for the odd occasion we get very hot weather.
Hi Over, sorry I cut your user name down, That is a nice feeling. Yes, I do find myself going to running cool water often in these times. It does help along with all the other great advice the sweet people here offer. I will have to take your advice on the t-shirts. Glad to hear that it is an odd occasion that where you are sounds like you do not get very hot weather. I appreciate your help and caring. Sending you blessings peace, thestorm
Can I ask.....dose the really hot weather cause flare up ?
No. Being exposed to the sun for overly too periods does - but heat shouldn't make lupus worse. ( From Australia - lots of experience here )
Hi Mozart, For me ,yes it does. I know that we all have some shared symptoms, but as each of our bodies are unique what is for one of us , may not be for all of us. I have documented many flare ups with my lupus and other conditions, and for me there is a pattern. As chest wall pain from lupus effects the nerve endings and the heat can cause the brain not to recognise the heat or cold, and raynauds, my body doesn't keep a balanced temperature. So As I wrote in other posts the wrath of lupus and humidity and heat make life miserable for me. But I do get wonderful information here. Thank you for your support and caring, peace blessings thestorm
The storm Hello again I also get chest wall pain from lupus, the doctor prescribed colchicine for me and it seems to help...how do you handle your pain?
Hi again , Sorry I missed your post here, I responded to the first one, Well I would like to know more about colchicine, what is it. I am always looking and listening from fellow hubbies here on what works or helps for them. Then I do some research and see if my Dr's agree. I have a lot of different pains, as many of us do, and for me, it depends on what the pain is and what is it from, first. I am sure you know with lupus pain is part of our daily lives here. I like many of us do take pain medication, I practice mindfulness, stretching, I use Ice or heat packs, I take otc's, I use lidocaine cream, solon pods, and more. But it all depends on the pain and the type of day I am having. For chest wall pain, there is not much I have found that works. It is a very frightening, anxiety ridden pain. May I ask what else helps you? Thank you so much for the advice and support. I know we all have it to bare, and I am glad to here from you and many other great people in this hub. Let me know, sending peace, thestorm
Thank you Thestorm!! I never realized the Raynaud did that! I have that also and thought it was crazy menopause causing the crazy sweats and chills constantly. Xx
Possible a Doctor might be needed more than an air conditioner ?
Hi Freckle, down, under, I am sure you get the heat, and all, for me as I wrote our friend above, the weather does play a miserable part in my lupus symptoms. I find that barometric pressure does it to. I have documented my symptoms and have seen my Dr's in the past, the dew point makes a difference also. I should have been a meteorologist, by my body. Ha Ha, We all need to laugh, but on the reason for my post, I am seeing a new GP in August. As I have moved, and Do not have a Gp until then. If my symptoms persist, I am going to the ER again. Although, in past experience, there is a lot to be said for how they handle people with autoimmune conditions. Basically sweep us under the rug, and refer back to your GP. This is hard to balance in my mind, to go and be dismissed, sort of cruel. I thank you for your input and support. believe me I need it. peace blessings, thestorm
Yep, I think the hardest part of this illness is dealing with the Medical system and its invalidating attitude toward us. Its grinding. Just having to front up all the time to Doctors that would rather any other form of patient than one who has lupus...….its the same here - so many delays in treatment and bad attitudes - I wish I could joke about it. All you can do is keep fighting and try not to get so burnt out by it all that you let things slide. Harassing Doctors is nearly a full time occupation for me...…….pretty sure my GP would like to see the back of me - but If I hadn't learnt early that chronic Doctor botherer is what I need to do to stay alive - I'd would have been a goner a long time ago.
I hope you can see a GP sooner !!! but as you said - get to an ER if you're concerned.
With SLE Lupus it's always a good idea to get you're kidneys routinely checked - just as standard practice. Don't have any qualms about telling them what to test. I'm definately not thinking you have kidney problems - I'm just a bit renal paranoid.
Really hope you've had a cool change and coping through this rough patch. This is a great place for moral support - so keep posting. : )
xox
Thank you Freckle, I truly want the best for all of us here, and no matter what, you are right, we cannot be afraid to tell a Dr , who may not know us, what to please test for. Sweating to the oldies, as the saying goes. Or around the world in 80 days? Just a pun to laugh at. I am a bear in this type of weather, and here at least advice is a very welcome thing. Hope you have good days, keep posting too. sending peace, blessings thestorm
Yep, I know the age cranky's myself. Not quite prepared for bits of me drooping and randomly falling off. Hot weather does make everything worse.
Peace to you too ! A cool change will come.
: )
x
Please pray for me. Here comes the next round of 90-100 degrees and 70+ humidity from our great southern storm. This one is to last 4-5 days. We have sever heat index warnings across the boards. Will take me down..... sorry, but I fear the time. Just so sick, I would welcome a coma at this time. Being mindful of the weather, and its sickening grip on my painfully week body. Forgive my rant. thank you for supporting me. withering, thestorm
I'm praying for u the storm!! 🙏
You've had lots of tips n I totally understand where you're at with the heat n humidity..it affects me badly too!! Definitely the baggy t-shirt idea..just the t-shirt n nothing else..that way u can waft it n create little drafts around your body!! I stay in with all curtains drawn n not many windows open..I'm fortunate to live in a bungalow n even though it's unbearably hot n sunny in the garden I do manage to stay cooler indoors..I've only been here for a couple of years n it has been recently insulated in the loft so I think that might have something to do with it!! I'm in the UK so no air conditioning!!
This is gonna sound mad but between u n me I have found that listening to cold things helps in the heat??? What do I mean? Finding recordings of cold places on the internet..snow storms n blizzards r good..heavy rain storms with relaxing music..strong winds..thunderstorms etc..all help to cool me down!! Ah the things we do eh?
I do sometimes use a plant spray bottle filled with water n a few drops of essential oil..I like lavender oil..I keep it by my side n when needed I just squirt myself with it..n any others too..my hubby gets regular squirts too!! I just leave it on my skin n it gradually evaporates.
The wet teatowel around my neck helps too
Hope u get some relief soon as the storm breaks xx
Thank you soooo much Krazykat for the prayers:):):). The idea of soothing sounds is a really 'cool' idea!!! and yes just a light shirt, I am not just ranting, I want you all to know how much I truly appreciate your ideas. I am trying them all. Living where you do, without AC, and having the bad, sad effects you encumber, You are much stronger than me. God bless you. The essential oil in a spray bottle, sounds nice, and the smell of lavender, or maybe cucumber is very creative. Sorry I have tremendous brain fog and dyslexia symptoms going on. The barometric pressure is swelling my mind, lol. Even my eyes are heavy. On the up side, they are opening cooling stations around the reagens here. I know it is not just me, my heart goes out to everyone with this sever weather swing. I hope your bungalow keeps you comfortable, and the insulation in your loft definitely makes your place better. If I may ask, how does the heat and humidity affect you? It is not a nice reaction to many people, yet, for me growing up, I loved the summer, and all the fun we had. I guess I just would like to feel normal again. I have to find that place in my own mind. I thank you again for your support, prayers, fantastic tips and for caring to answer me. It does mean alot to my heart. You take care, keep cool, and healthy as possible. 🤔🤔 peace, thestorm
You're most welcome 💐💐
I have come to dread the summer months..I have cutaneous lupus n am extremely sun sensitive so have to do sunscreen, cover up at all times n stay in as much as possible!! When my skin flares up I get cracking n ulcers on the palms of my hands n the soles of my feet 😭😭
How does the heat affect me? I get really fatigued..can sleep for hours..17 hours is my record so far..n I could literally sleep for the whole duration!! Brain fog?? Oh yes..can't think straight, hold conversations, can't concentrate on anything much!! 🙀
I'm not very mobile anyway but with heat n humidity I'm very unsteady on my feet n I stumble much easier..hubby keeps an eye on me..n we've agreed that if he's out I won't move about on my own!!
I'm a lady of a certain age n since the menopause I've had hot flushes..in winter months they don't bother me..it's like having my own little body heater..but in summer..totally different story!! Red face..I even find it difficult to breathe through them..n they seem to last longer!! 🤪
Mood is affected too..I become a very grumpy/irritated bunny 🐰I must be very difficult to live with!!
Cucumber spray sounds lovely!! Have just thought peppermint would be nice too!!
Be kool!!! 🌬️🌀☃️❄️🌧️☔Xx
Storm, sending you a ice pack hug 🤗 and many prayers!! Xx
Hand-held mini fans have been life savers for me. Those, along with spritzing cold water on my face, have allowed me to walk around in 91 degree heat and high humidity.
Cool packs are good to get your body temperature down fast.
If you don’t have air conditioning in your house, there are ways of putting ice in front of a fan for a cooling system.
Please let us know how you are doing. We have to help find solutions to keep you cool. You are really suffering from the heat.
K
Hi KayHimm, thank you for your ideas and caring time to post me too!!! I know I have been a bear to everyone lately, and I appreciate the responses, advice, input, and help. Weather is a wicked one to many of us, and my best wishes go out to them and you also. I see there is a more current post going on in this hub about Heat and flare ups. I have been following that newer post too. That is why I am so bewuthered here in my own area. My symptoms have been so bad to me the last weeks to months, that this heat just crushes and good body parts I have left. A hand mini fan sounds good to try, between krazykat's ideas and yours, I will feel the wind beneath my wings:):):), I am so grateful for your reply, just hearing from others also does my heart and mind good. I am thinking I am at the North Pole, snow and santa claus with bells on. You all inspire me more than you know. Treading on thin ice, and using the cold paks. haaaaaa, the things we all endure. Thank you again my friend, peace, thestorm
Dear Freckle, please tell me more about the renal thing. I am in so much pain and see. Urologist tomorrow. What should I know
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