I was miserable in summer with total body flares. Now in colder weather I’m cold all over but still have feet and hands flare.
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Hi, I’ve also noticed that I have to avoid getting too cold as well as too hot. Episodes of erythromelalgia are like a ‘rebound’. If my feet, hands and knees get cold during the day and I leave them like that for a while, I’m guaranteed to have erythromelalgia in those areas at night. If I get cold & warm up too quickly it triggers erythromelalgia. Things are much more manageable if I’m able to keep at a comfortable temperature and if I do get cold, I warm any cold areas straight away but gently & gradually.
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Good advice. I’ll implement this as well.
I agree. At least in my case a suffer from EM and Raynauds, that means I hace to procure to myslef a comfort zone with not too cold or warm environments and especially avoid abrupt changes (contrast between cold/hot and viceversa)
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Do you think you might also have Raynaud’s? I have both. So I’ve got like a few weeks a year where things are calm.
Thanks for your comments.
My feet have been cold for years. Appears some level of neuropathy. The EM has just shown up in the last year. I have good nights and bad nights. I’m going to take your advice and keep feet warm as day goes on and see if helps keep bad nights away.
I tend to over warm with water or dry heat and then feel tingle.
We are all trying whatever we can to mitigate daily pains and irritations.
Maybe. Can it basically just be in feet or is it hands. Any special treatment for Reynaurds?
Hi, it’s interesting to read what you say. I am beginning to realise this in the last few days. I have been suffering for 8 months and been recently diagnosed with EM (mainly affecting feet, a little in my ears too) so am learning how to cope. During the summer I was obsessed with keeping cool. I found it more difficult when the weather became cooler and ended up with the problem of my body being cold and shivery yet my feet hot! I continued using my fan and gel packs though. For the last few days I’ve tried not using them so much and started to accept that I can allow my feet to get warm and they don’t always flare! Even when they get red, fingers crossed, they don’t seem to get so painful. I still need to make sure the room doesn’t get too warm though. As you say, it’s doing things gently that seems to be key. It’s all a question of trial and error I suppose and very difficult but if it means less pain, hopefully it’ll be worth it.
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Good to hear others stories and hints. Makes one feel that we are not alone in this. Best to you.
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