My erythromelalgia (EM) is simultaneous with raynauds (RP) 24/7 all year round...predictably, the EM burning is even worse than usual in this heat 😏...so am staying put in the shade...and just went on Facebook where I found this:
The story of a Woman with EM is written up brilliantly in The Washington Post - front page on the online version of the paper!! So great for awareness! If you click on this link you should be able to read article in full (and see the video where The Erythromelalgia Assocoiation (TEA) is mentioned!).
👏👏👏👏 Our footy⚽️ just gave me this link to the NORD (National Organisation for Rare Disorders) website's BRILLIANT info on EM...definitely worth reading...even gives you medical synonyms for Erythromelalgia 🤗...
Thanks guru. Sorry you are suffering in yet another way at the moment, but as ever you think of diseminating info for the rest of us, despite what you have going on yourself.
You are a treasure.
Please wrap yourself in whatever helps, ( I nearly said cotton wool! Tut!).
Thanks for sharing Coco, I have burning feet especially in this heat, I have Raynauds too, so both hands and feet get very cold too, I've only got to walk into a slightly cooler breeze or walk into a room that is in a shaded part of the house and my hands have 'gone'.... there's no winning😫
That's it...when the medic explained I had simultaneous raynauds + erythromelalgia I understood why I could never win: the burning & the freezing sensations happen 24/7 all year round at the same time, so I'm constantly trying to cool myself down while I'm trying to warm myself up. My feet, hands & face are affected worst...for most of my life I just had raynauds, but for at least 10 years it's been raynauds + erythromelalgia....when these were diagnosed I was horrified at first, but then I felt relieved to at least have the explanation....and 5 years into taking my daily combined therapy lupus meds, I do think these help a bit with simultaneous RP + EM....BUT lifestyle manage,ent techniques are my lifesaver. The TEA (The Erythromelalgia Association) has been a great help with this....there is info about TEA in that link.
Over the years, it's been a great comfort to meet others here managing these conditions simultaneously...we're stronger together 👭👭👫👭👬🌟👍
The first time I had burning feet was on holiday in Spain about 20 years ago it was horrible especially in bed at night, but it hasn't really been a bother until this year it's been much more noticeable and also last winter RP was much worse in my feet, I've had it in my hands for about 16 years, it's as though when it's hot they go the complete opposite and swell up and are on fire, yet in a flash become really cold and yes my face gets so hot I think it's going to explode😳😩These symptoms along with others seem to have manifested themselves this year....roll on my '💡💡💡moment' for a firm diagnosis!
Oh cutty...you make me feel like a million £s 😂😂😂😂....you have such a wonderful way with words...and I think you're the embodiment of this too...as are all our inspiring friends here on this wonderful forum. Am so glad this link is useful 👏👏👏👏. Take care ❤️😘🍀🌻
So sorry to read your EM is bad because of the heat. I can't imagine what it is like to have EM and Raynauds together, trying to do enough for both conditions as there so opposite!. Must be really hard and yet you don't complain. I hope it's a bit cooler for you today and it improves for you. You deal with so much heroically. X🍹🍹👌🏻👌🏻💚💚😊😊
😘😘😘😘 you can get used to anything, no? 😜. At first I felt totally out of control and defeated by this combo of conditions...but the more I learned from others toughing this combo out, the more I got my version of this in perspective 😏...and the better informed I became about this...The more able I felt to lifestyle manage it....simultaneous EM & RP is relentless, but I'm in good company which makes carrying on feel more natural and even cheerful 🤗 ...and your comments boost my morale hugely: dear misty, you've been courageously living day to day with life changing severe chronic pain as well as immune dysfunction for decades...my feeling is you know exactly what I mean ❤️🍀🌻😘
Yes I do know what you mean and agree with you.that we can get used to anything if we have to, our inner strength kicks in and helps us cope. Your comments have boosted my morale to o thank you. Hope your eye appt went well. I see you've got different eye drops, hope they help you. Take Care in the heat. X
am not sure what to make of my eye appt...am hoping someone will reply to my post telling something about their experience of these immunosuppression drops..am not eager to start them...but the consultant was insistent that my eyes really need much more than the treatments in the plan i've been following....he had a student with him, so i got the full on explanation of everything about the condition of my eyes... in detail...a bit sobering....but not surprising....anyway, am 'processing' it all...
Good luck with trying the new eye drops. They sound much stronger, I'd be wary of trying them. No wonder he said you can stop them if they sting too much!. Thinking of you with fingers tightly crossed. It is sobering for us when we have things spelt out, specially if we're used to making light of our problems!. Keep processing. X
👍👍👍👍😘😘😘😘 have just replied with more info on my thread here about the drops....thanks so much for helping me think this through dear misty....hope you have a pleasant BH weekend ❤️🌻🍀
I hadn't heard of erythromelagia - it sounds awful! I'm sorry that you have it and that you are suffering in the current southern heat - if only I could teleport you to the west of Scotland where it has struggled to reach 17 degrees C today..... Many s
I'm so embarrassed to say that it didn't even cross my mind that the burning in my feet and hands might be EM (I used to be an MD but then again, all that brain fog).... my face gets very red and hot and has a burning sensation at times but it doesn't seem to be the same thing. The EM in my feet and hands seems to parallel my Raynauds... thanks!
😊 when my GP told me the rheumatologist had diagnosed simultaneous RP & EM neither she nor I had heard of EM: she wrote the term on a piece of paper for me...I still have it!
The rare diseases org link is still THE best source of EM(&RP) info I've found.
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