Hot weather effects

Morning friends, wow as much as its lovely to get sunshine. im finding this heat too much for me ,does anyone else feel this blood condition can make us more uncomfortable in the heat ,i find 68/70 deg my limit i cannot seem to cool down in the higher tempertures, i drink alot , use fans indoors but feel unwell most of the day if i even do little housework .any tips on keeping cool be great regards Holly

20 Replies

  • Me too ,suffering,30+for many weeks now here.Early morn manage a little outside ,dogs etc,by 10 am,we have to close up house fans on,to try anything that needs energy just makes me ill.Sure it is worse for us in the heat,Use a water atomiser ,fans,loose clothing.really what else can we do.Would love to be outside ,but even the shade is mad heat here.It will not be forever,just think that!....Keep cool as Possible Catwoman,cool showers help if you are not too itchy with water,best wishes.Sally

  • Thanks Sally yes agree with you xx

  • Bear with me here - this will probably sound a bit nutty but I use this for various things, even the heat!

    Say out loud "I acknowledge feeling (hot, bothered, drained, miserable, whatever you're feeling) and I choose to release this feeling from my system - take a deep breath and shout - RIGHT NOW!!

    I know it sounds a bit whacky but try it - it helps me get to sleep during these hot nights - have some fun with it too, you might be surprised at the results!

    Best wishes everyone, Christine

  • Hi Christine ,haha funny you say that ,but i shout out ... its too hot cant bear it etc will try your way x

  • Don't think I can find the breath to shout! Will give it a go tho,just sprayed with Evian soaked hair maybe after the next pint of water will try!!'

  • I went to a festival last weekend and it was very humid. I was fine for a few hours then I started getting very uncomfortable, heart racing, clammy sweats, etc. I had a couple of beers but drank water between...I think we don't regulate body temperature very well. It was embarrassing.

  • Yes your right there Jennifer i hate being over heated in some ways i prefer cold weather nowadays even to high central heating i cant cope , my son and daughters houses are always too hot for me best wishes Holly

  • I think if it's hot like that I have to avoid alcohol all together. Drink lots of water..I went to my car and blasted the A/C and felt better. By that time I was freaked out and just ended up going home. These weird symptoms really get me panicked. I guess I need to learn to calm myself

  • Wow I'm on APS/ Hughes Syndrome Forum and somehow ( I'm computer dummy) just call me Dori! Lol... I have this excessive sweating problem that really no one on my forum has! I do have PV and forgive me if I'm intruding on a site I don't belong but the heat has put me down and NOTHING STOPS ME! I feel weak and sluggish and DK WHY! Godspeed to y'all & be well!!!

  • I also itch with hot water but that the PV correct?

  • Hi Debbie, I itch quite badly with PV and I'm on antihistamines. Welcome to this forum. Aime xx😺😺

  • Well I agree with everyone that the excessive heat is unbearable. In Greece the temperature here has been 38c and more for 3 months. I have found it a nightmare. Two weeks ago I started gasping for breath which was the scariest feeling ever and the Dr was called. My oxygen levels had dropped to dangerously low and I was rushed to Accident and Emergency here in Corfu. I was still putting it down to the heat but x-rays and scan showed pulmonary embolisms on the arteries to both lungs. My hubby was told I was very seriously ill and I was admitted to hospital and put on oxygen and daily injections of heparin as well as intravenous antibiotics. In short the doctors saved my life and I will be eternally grateful to their excellent care. Eleven days on my scan is clear and I am back in my own home with prescriptions and instructions for my after-care. It was a close call though and me thinking it was just the heat. Lesson there? Maybe so.

  • It is very humid but I have to say I don't really feel any hotter than anyone else .

    My husband has just been clothes shopping with me and he was sweating a lot more ! Lol

    I helped my daughter yesterday by getting in the pool with the 4 kids while she was packing for their weekend away and again she was hotter than me haha

    Take care Holly drink loads and keep cool xx

  • Hi Helen thank you , im hoping to feel better once i start Hydocycarbonide ( well in some ways ) i have never been a sun worshiper but last few years i find it all unbearable and yes humidity doesnt help .Hope your doing well ? you look great in your pics on facebook take care .. im due to start the tablet 28th Sept got a reprieve because of my daughter getting wed on 17th shes 41 a late starter haha x

  • I totally agree Holly and although I have never been a sun worshipper I am finding it harder to regulate temperature. I do think the hydroxy has helped though. Prior to that I though it was a post menopausal issue.


  • Hi mary im well past menapause , so yes hoping that starting treatment will help thanks Holly

  • It's just simply a nightmare ~ I'm longing for the winter, and then I will be turning the heating down to its lowest.

    I've been an itchy, sweaty, head-achy. tired mess for ages now and haven't slept a full night for months :(

    I'm also going through the menopause so I've got a double whammy! I've no idea where PV symptoms and menopause symptoms begin and end; they've both merged together to make me look and feel like a furnace. :)

    One thing I have been doing which helps a bit is to freeze a 'hot water' bottle, half filled with water and place it at my feet. A giant ice-cube.

    I've been very tempted to buy a chest freezer ~ not for food, but for me to sit in!

  • Kari , What a good idea I have a small freezer big enough to sit in , I'd never thought of that before 😜

    I m to going through the

    Royal flushes after a Hysterectomy 4 years ago

    I'm not sure what flush is what !!!!

    Roll on the autumn 🍂🍁

  • what a great idea! yes you have double whammy eh .i will try the cold water bottle .im one of these people that feels worse with just few hours sleep , i was always a good sleeper 10/12 hour im lucky if i get 6 now! i cannot nap during daytime either sadly , you take care and hope things get easier for you best wishes Holly

  • Hi Holly. Someone on this site recommended something to keep cool and it really helps me. It's a smallish hand held battery operated fan with a reservoir for water (& ice cubes). You can just mist or also turn on fan. I mist & then fan. I carry it in a small cooler bag so ice doesn't melt too fast. A mister with ice and water would also help. Also, for sleeping, they make pillows to keep your head and neck cool (I think they may be called chillows) and sheets that r supposed to help regulate yr body temp. My a/c works for me so I've not tried the pillow or sheets. Good luck! Katie

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