Normally I flare every evening/night without fail. If I have to go out wearing shoes I flare. All the usual symptoms and pain.
I have been dreading warmer weather in summer and recently we have been experiencing very high temperatures here in the UK.
However, on most of the days when the mercury has reached 29-32c I have not flared. Only one exception.
My feet have become warm, not hot. The usual bright pinky red and a little 'buzzy' but none of the usual pain that goes with my normal flares. Yet when the temperature dipped for a day or so I went back to painful flaring again.
Yesterday was cooler, around 25c and I had a really bad flare.
Today was 32c and I had to go out. No flare! Sat and watched TV this evening as the fan swirled the hot air about - no flare!
I even had a glass of cold Guinness on one of the really hot days (alcohol is usually a no-no as it makes my feet hot), but once again, they just pinked up and were warm but no flare! The Guinness went down a treat.
This EM is a law unto itself methinks, just when you think you have it sussed it throws another spanner in the works.
Anyone else experienced anything similar or out of the norm with their EM?
I think you are right EM is full of surprises. Maybe the beer helped because alcohol constricts the blood vessels.
Actually we should be drunk all day and all night to stop the flare ups. I am too new to EM and haven't (yet) experienced what you described - I don't have flare ups - I have been burning 24/7 for over a month.
I think you are right EM is full of surprises. Maybe the beer helped because alcohol constricts the blood vessels.
Actually we should be drunk all day and all night to stop the flare ups. I am too new to EM and haven't (yet) experienced what you described - I don't have flare ups - I have been burning 24/7 for over a month.
Stay cool
Hello Domina
I stopped drinking alcohol a number of years ago because it made my feet feel unpleasantly hot and itchy although they didn't change colour or have any other symptoms back then before EM reared its ugly head. I don't imagine for a minute that I will take up alcohol on a regular basis, it was just a very hot day and it looked so inviting that I thought 'what the heck.'
I know what you mean about drinking - I used to enjoy my wine or champagne at least 2 to 3 times a week getting together with friends and I smoked. In April of this year it all came to a screeching halt - the verdict was COPD and 2 weeks later Pericarditis (inflammation of the heart lining) . In early May I went to my doctor with my hot red burning hands and I was lucky that the dermatologist she send me to knew what that was all about.
So the old fun and games are over but my friends are still around and I am actually doing pretty good. Hope you are doing o.k. and I am sure that a beer once in a while isn't going to do any harm. Stay cool.
I hope that by saying the fun and games are over that you have given up the smoking. Believe me, smoking and COPD are not the best bedfellows as I know to my cost. If I had only heeded the warnings over the years (and there have been many) I wouldn't be so dreadfully miserable now. Too late now alas. The follow on from COPD is emphysema and I am now spending my last years constantly struggling to breathe. Coupled with the misery of EM it isn't much of a life but I try to do the best I can.
A am sorry to hear that your symptoms are 24/7. That is really hard to bear. At least I get some respite from it.
I wish you well and hope that you find something that will help with your symptoms. Good friends are worth a lot.
Best wishes,
Tilly
Domina said:
I know what you mean about drinking - I used to enjoy my wine or champagne at least 2 to 3 times a week getting together with friends and I smoked. In April of this year it all came to a screeching halt - the verdict was COPD and 2 weeks later Pericarditis (inflammation of the heart lining) . In early May I went to my doctor with my hot red burning hands and I was lucky that the dermatologist she send me to knew what that was all about.
So the old fun and games are over but my friends are still around and I am actually doing pretty good. Hope you are doing o.k. and I am sure that a beer once in a while isn't going to do any harm. Stay cool.
nice to hear from you again. I don't know how bad my COPD is; maybe I already have emphysema; was too afraid and shocked to ask the doctor about any details when she did a breathing test on me and said - you have damaged your lungs and gave me an asthma inhaler to use twice a day to see whether it would improve my breathing. It did make things better and I never touched another cigarette - went from 20 a day to zero.
BTW, my dermatologist said that EM could also be caused by COPD. Well, just like you I have to say - my fault, should have quit years ago - there were enough warning signs - coughing and bronchitis and just the knowledge how bad smoking is all the way around. My EM is getting worse, now my feet are also affected and I have little fans all over the place to cool me down, because I read that cold water or ice bags are a bad idea.
Take care Tilly and let me hear again how you are doing
I was just clearing my spam box and found your message there along with another from another EM member. Don't know why that happened.
I wonder how old you are. I am 66 and my first real warnings began about 10 years ago. I have had COPD for more years than I care to remember and am now on 3 different inhalers each day - all taken at maximum allowed dosage. Started off with the asthma inhaler as I started that problem way back when I was 21.
I have been told that Em has no connection with smoking but poor circulation from a lifetime of smoking must be added to the mix somewhere. If you have only just started on an inhaler then you are not too far down the line to see a big improvement in your lung function if you have stopped completely. It can only be for the good that you stay of the cigarettes. The odd drink shouldn't hurt, unless it interferes with your EM. It will be really interesting to see if your EM clears up once the pericarditis clears and the lungs are not compromised with the smoking anymore. That would be a great result wouldn't it? I really hope it does for you.
As to the ice and cold water, they are really bad for your skin. Don't go that route if you can help it. The odd short duration dunk in cool water won't hurt but protect your skin with moisturiser when using a fan, especially if it is up close to you.
Right now I am reasonably ok as it has been cooler and less humid today. I am due to have another round of Iliprost infusion in September which helped quite a bit with the symptoms for a while first time round.
Meanwhile I just have to live one day at a time.
Best wishes,
Tilly
Domina said:
Hi Tilly,
nice to hear from you again. I don't know how bad my COPD is; maybe I already have emphysema; was too afraid and shocked to ask the doctor about any details when she did a breathing test on me and said - you have damaged your lungs and gave me an asthma inhaler to use twice a day to see whether it would improve my breathing. It did make things better and I never touched another cigarette - went from 20 a day to zero.
BTW, my dermatologist said that EM could also be caused by COPD. Well, just like you I have to say - my fault, should have quit years ago - there were enough warning signs - coughing and bronchitis and just the knowledge how bad smoking is all the way around. My EM is getting worse, now my feet are also affected and I have little fans all over the place to cool me down, because I read that cold water or ice bags are a bad idea.
Take care Tilly and let me hear again how you are doing
thanks for your advise - I have discovered that my skin on my hands has become very sensitive, even before I used fans, and I am using lotions by the pound. My dermatologist recommended something called SARNA; I have ordered it from Amazon cause I couldn't find it in a store; should get it in a few days. And touching satin feels wonderful - like in bed sheets and comforters - always had them but know I really appreciate them.
I just turned 68 and have been smoking since I was 18 or 20 - that's a long time. One cigarette a week and I wouldn't listen to my father who had been a heavy smoker and knew what it was like to quit (he did at age 45). I couldn't believe that one could smoke 2 packs a day - until I did. Later on I ignored the coughing and when I was short of breath walking up a hill that started a few years ago. I ignored it because I knew that it was the cigarettes but I couldn't face the reality of giving up what I loved so much - a glass of champagne and a cigarette, my morning coffee and a cigarette, a heavy meal and a cigarette, sitting behind the wheel in heavy traffic and smoking..........Luckily I didn't have a problem to give them up a few months ago - the pain in my chest was too great and scary and I was too busy just trying to breathe.
You mentioned an infusion that you get in September - what kind is it? Seems there is a typo in the word* lliprost* But whatever it is I do hope it'll do what it's supposed to and help you.
Where do you live Lilly? You said that it was cooler and less humid when you wrote. I am in Reston, VA. - about 20 miles north-west of Washington, D.C. and last week was brutally hot and humid. Now it's beautiful again with temps just a little above 80 and low humidity.
If you want to keep on writing once in a while, maybe it would be nicer to use regular EMail - mine is ■■■■■■■■■■■■■■■■■■■■■■■ and I am also on facebook.
Really sorry Domina, I have been a bit under the weather and not done any mailing at all for a few days.
I have tried adding you as a friend but whenever I do everything goes blank for some reason. I don't know if you will receive the request or not. Must be this heat spike we are having over here just now.
I see after all that I was trying to teach you to suck eggs bearing in mind you are a couple of years older than me. Your champagne lifestyle sounds fun! If you can get the friend messaging thingy to work then I will mail you that way to begin with if you don't mind. I live in the UK about 30 miles east of London. I was born in London.
Domina said:
Hi Tilly,
don't mean to bother you but since I haven't heard from you again I hope that everything is o.k.
Really sorry Domina, I have been a bit under the weather and not done any mailing at all for a few days.
I have tried adding you as a friend but whenever I do everything goes blank for some reason. I don't know if you will receive the request or not. Must be this heat spike we are having over here just now.
I see after all that I was trying to teach you to suck eggs bearing in mind you are a couple of years older than me. Your champagne lifestyle sounds fun! If you can get the friend messaging thingy to work then I will mail you that way to begin with if you don't mind. I live in the UK about 30 miles east of London. I was born in London.
Domina said:
Hi Tilly,
don't mean to bother you but since I haven't heard from you again I hope that everything is o.k.
I don't know whether you are getting this - there is something weird going on with the *Reply* function. I was able to sent you a friend request - at least it looked like it went through.
I'll wait before I write some more to make sure you are getting my message.
Just like most things EM, any good results don't last for very long. Now I'm back to the regular flaring regime with all the usual symptoms. I have decided that the odd little tipple once in a while won't hurt me any more than the EM. Might as well enjoy a little bit of what I fancy that way. If I drink it while in the midst of a flare I should hardly notice the extra heat in my feet anyway.