My doctors' current theory is that I have EM, Raynaud's, and chillblains all at once, so I'd love to hear from anyone here who has EM in conjunction with Raynaud's. In particular, I'm curious if any of you have the seemingly inverted seasonal EM experience that I'm seeing.
What seems very different for me (compared to most accounts I've read) is that my condition is far more manageable in summer (I live in New England). In the summertime, my toes are pink and a bit warmer than they should be, but they don't get painful flares and I can walk around just fine. In winter, however, I get frequent (1 to 3 daily) flare-ups - and that's if I spend all my time trying to avoid triggers. They ache all the time and always seem too cold or too hot. Flares are red/hot/swollen/painful and are most often triggered by warmth (but sometimes seem unavoidable) and can last all night.
I seems that my flare-ups are triggered by the wide-range temperature increases possible in winter, and can stay more stable in summer when they never have a chance to be exposed to such a change. In winter they seem to fly from icy Raynaud's pain straight into an EM flare, unable to stay at a medium temp.
Do any of you have an easier time in the summer too?
Hi LibbyK,
Not sure if you’re still on here. I’m new and came across your post. And yes! This describes me exactly. I’ve only had EM for 2-3 years now, and I keep thinking in the summer that maybe the EM has gone away. I think it has something to do with how much more breathing my feet get to do. Shoes and socks are the absolute worst thing I can do, but then, well, winter.
Hello there. Wow, this is an old post! I’ve had EM for nearly 9 years now. I live in Minnesota right now and winters are brutal. I’m going to have to move away. I still have a much easier time in summer, though I have flares every day no matter what. My EM is still not very outright painful, but flares (burning/swelling) are more severe as time goes on, and more areas have become affected over time. My sweet spot that allows the best life with fewest difficulties is 60-65 degrees f and cloudy, sandals and a hoodie.
Hi LibbyK,
Not sure if you’re still on here. I’m new and came across your post. And yes! This describes me exactly. I’ve only had EM for 2-3 years now, and I keep thinking in the summer that maybe the EM has gone away. I think it has something to do with how much more breathing my feet get to do. Shoes and socks are the absolute worst thing I can do, but then, well, winter.
My symptoms first showed in a cold snap of single digit temperatures in February 2015. I was worse in winter than in summer, though it was a fairly small sample before I started pharmacologic treatment. My symptoms are well controlled now with medication, but my EM affected areas remain substantially colder than other tissue.
Yes, my EM affected areas are typically far colder than other areas unless they are flaring. What medications have worked for you, CarterDK? (I’m hoping maybe people with similar combinations of variations respond similarly to treatments.)
LIbbyK, yes mine doesn’t hurt exactly either. But my feet get just so unbearably hot that I think I’ll go mad if I don’t rip my shoes and socks off. Which can be awkward when, say, in the middle of teaching a class. Flares for me also tend to lead directly to chilblains, which DO hurt, and itch, and generally make walking difficult. I’m so sorry that you truly may have to change where you live in order to manage this.
I’m in the mountains of Va. Not as cold as Minnesota! But cold. And damp. I think the damp is actually the worst.
Sure, I take a combination of mexiletine and propranolol. Each seems to play an important role for me. I started propranolol first and while it provided modest improvement, it did not stop the flares. My doctor then added mexiletine and that provides close to 100% coverage. Consequently, I thought for years mexiletine was primarily responsible for my improvement. However, I see an uptick in symptoms when I’ve tried to stop propranolol. I currently am taking 60 mg of propranolol in extended release once a day and 150mg of mexiletine twice daily.
EDIT: While I don’t know if it is at all beneficial for my EM, I also take 1,000 IU of Vitamin D daily. I began taking that around the same time period as the other drugs. I think it’s good for my mental health. I used to struggle with intermittent depression and was actually taking an anti-depressant when I started with EM. Now I never get depressed and have not needed an anti-depressant since.
