OMG it is roasting hot here, as is the whole of the UK I suspect - this country doesn't do anything by halves.... If it rains we get massive floods, if it snows we grind to a halt, and if we get some settled summer weather it's a darn heatwave.

How are you all doing out there in the heat? I am struggling to get cool, let alone keep cool. My left foot is on fire regularly come the late afternoon, my hands are prickly and fat, and if I don't get jobs done in the morning when it's cooler, they stay not done til the next day!

I am walking on my cool stone floor when it get really bad, but never when the floor is really cold as I know it might as well be ice with the effect it would have after the initial ahhhhh. Even more ouch. I'm wearing cool clothes, staying inside as much as possible, trying to keep moving, etc. but I just want to jump into a cool pool and stay there. Well I almost want to

Any tips and tricks? I do a cool (not cold) Epsom bath for my feet in the evening and keep my legs elevated when I get the chance, but i know we've got another couple of weeks of this and I am dreading it. Mind you, when the cold and rain come that'll be horrible too!!!! Aaagh!

Anyway, hope you guys are doing ok - I know many of you will be suffering dreadfully in this humid heat, so I'm sending you all some cool, very faintly breezy wishes....and hoping for some nice 21-23*C weather instead.

Bram

I live in Arizona *sigh*. It's not horrible summer weather now; at least we're under 110*F right now. When it goes over 110, it's just like walking into a brick wall when you go outside.

I hate Arizona I wish we had never moved here ...

Oh crumbs, now that's HOT it's horrible when you live somewhere you don't feel comfortable....

Bram.

I live in the U.S. - New Hampshire. It is 93 F today and I am melting. I have been struggling with my very bad flare after a new injury to my ankle. The heat turns it into what I can only call "lobster foot". It swells, turns flaming red and feels exactly as it looks.. just like you- on FIRE! I have to plunge it into the pool and then elevate it on huge pillows to calm it down.

It is a very limiting and frustrating thing. : / I have barely been able to see my horse because of this.

I wish you all MILD, happy weather!

Aurora

It has been miserable here in Michigan! It has been in the 90's all week with HIGH humidity and dew point. Making it sticky and feeling over 100 degrees. We've been having rain storms daily too. The week before it was high 80's and bad humidity. Today is supposed to be high 80's nearly 90 a little less humid. Finally the nights are supposed to get a little cooler.

The humidity is hell on my RA which is not helping matters. Although I'd rather deal with the heat than the cold!

Bram your weather always sounds simaler like ours on the east coast in the US. Its been in the high 90s-100 with HIGH humidity here and its just been awful! Our poor air conditioners just cant keep up with this heat. And then last night we had a bad storm and it knocked out power for over 3hrs, so then it got really hot! Im just ready for it to cool down and atleast go back down in the 80s. The humidity is what gets us. I know many people that have said its much better when you dont have the humidity and the colder weather is always dryer and not as "cold" compared to those that have humidity and same with the hot weather.

This is what I dislike about CRPS... it is never happy. lol I am really bad during the winter. The cold is really hard on me, so I thought summer will be better. But no not really. If my leg is in the direct sun for more than 5 minutes it looks like I have a super bad sun burn and feels like someone has a hot iron pushed on it. It is really hard to keep my body temperature right too. I think it is because of going from hot (outside) to cold (A/C) all the time.

I do have a quick question though for all of you... My foot/ankle and sometimes my leg and especially my toes will sometimes get sooooo ICE COLD! and I can't get them to warm up no matter what I do. Sometimes they still feel like they are burning and other times it feels like they are getting frostbite on them they hurt so bad. I was just curious if anyone else has felt anything like that? And what you have done for it?

It's actually cooler!!!!! Hooray!!!! Still humid though and barometric pressure is definitely falling, my bones are aching. Darn weather! I would like to request a nice warm 24*C and sunshine with scattered clouds. Thank you. Lol.

I get the deep arctic cold thing sometimes...only thing that helps is sitting with the cold limb wrapped in a warm blanket for half an hour or so, it does eventually warm up. It's odd because moving around doesn't seem to help the cold when it's like that. I find direct warmth can work if that doesn't - I have a small kind of electric blanket thing that I use on its lowest setting for ten mins or so. Just make sure it isn't in direct contact with your skin.

A/C is a CRPS killer, I hate going round the chilled section in the supermarket because that chilled air makes me hurt a lot. Grr. Very wasteful on energy too, they should use fridges with doors!! It's not rocket science....

Bram.

It’s friggin hot as hell in Denver today at 38*C / 100*F omg! This is ridiculously HOT for Denver. I moved here some 18 years ago and no one, and I do mean no one had an A/C because it never got warm enough to justify it. Now everyone I know has some type of cooling device. Denver should be around 85*F / 29*C ish. My electric bill this last month was as ridiculous as the hot temps! I am looking forward to fall where it’s a lovely 75*F / 23*C for several months with almost 0 humidity, and much lower utility bills.


Ice cold feet, yes it’s like hyperthermia! I have noticed that if I will (as I call it) get off myself, meaning lay down, put socks on, and feet under blankets it usually helps. From what I’ve read the blood is sacrificed by the body in the limbs to keep blood flowing to your core. So I THINK the laying down part makes it easier to get blood flowing to the extremities.

I am the only person I know wearing socks in the summertime. I have gone so far as to have just recently got something called Little Hotties . I have not used them yet, but have them bedside for the next bad episode. I will try and remember to let you know how that works out. Since I have CRPS all over, I have the same problem with my hands and forearms too. I can just see myself with Little Hotties with socks and gloves and it’s 100* outside. Ug!

I'm from the UK too and have also been struggling with this terrible heat wave we have been having! Even now it has cooled down, it is still WAY too humid! These thunder storms haven't been helping pain levels either

I haven't really found a way of 'coping' with the heat in the 6 years that I have had RSD. I do tend to take cool baths, although these can sometimes cause pain to get worse

I really hate the summer as I have blood pressure / heart problems (POTS) and the heat seems to make it worse.

Sorry that no one seems to have any answers as to what might help... RSD is such an horrible condition Just know that you aren't alone and I hope you are feeling better soon! Hopefully the temperatures will cool down a bit!