I just recently got diagnosed with erythromelalgia last week. I also have raynauds phenomenon. My symptoms have never been painful until this last week but it is not always painful. I was wondering how long (months or years) that you had episodes of hot feet without the pain?
I’m wondering the same thing applejacks. I get mild pain/burning in my hands and feet (mainly) at this time. It’s scary to me to see what the future might hold but at least I’ll be informed. Grateful for that.
I have had EM/Raynaud's for over 3 years now, and mine is usually still not painful, just HOT. During particularly bad flares there can be a mild stinging pain, but it is definitely not like the excruciating pain others are experiencing. The thing for me that has been painful is the chilblains that I get in winter.
I'd like to know if anyone out there with the EM/Raynaud's combo has had their EM progress to extreme pain.
Also, applejacks, just to let you know - many people move to cold climates to soothe their EM, but I have found that also having Raynaud's means that everything gets exponentially worse in winter (basically the entire time that nighttime lows are freezing). I am trying to move back to a warmer climate because of all the extra flares, swelling, and skin damage that happen over each winter.
I have the EM/Raynaud's combo and I have times it is just warm and swollen and other times it is extreme pain. I have had what I now know to be EM for many years. I think it has been about 10 or so years. It was just occasionally and in my hand to begin with . About 4 years ago it turned into varying degrees but definitely including extreme pain and now effects most of my body.I go through periods where different body parts are more prone than others. My Raynaud's / pernio and chilblains started about 3 years ago. Just because mine got worse doesn't mean yours will. I know there are others that have had this for some time and it hasn't progressed. I think back and can't for the life of me figure out what if anything caused it to worsen. It did get worse just a few months after my first DVT and hysterectomy but it wasn't immediate it was a few months after those and they happened within 3 months of each other. It could be that Whatever is causing the EM also is the blame for the blood clots or is it the other way around???? I would try not to worry too much about it because at least for me worry causes flaring and you could very well never get any worse maybe even get better! I think everyone's EM is different making it that much more difficult for doctors to understand in turn more difficult to treat. I am glad yours isn't too painful. please try not to fear what may never come and enjoy your pain free days!
Take care,
Alina