This is some months old, but I have a few ideas… hope you don’t mind the delay.
My EM is also the same up to the 3rd day.
There is a site that has some ideas:
Once I heard of someone with sudden and painful peeling of the skin over a large part of their hand. It would recur every four months or so. The doctors determined that it was autoimmune and found that a steroid cream helped. It was so long ago that this is all I remember.
And I assume there aren’t blisters or bumps? If there are, there’s something called dyshidrotic eczema - and zocdoc says: “There is a form of eczema called dyshidrotic eczema which generally manifests as peeling of the skin on either the palms of the hands or between the fingers or the soles of the feet. … Dyshidrotic eczema is often brought out by changes in the weather or by stress.”
Those may have already been ruled out, but I thought I would mention them. My mom has weird, painful stuff happen with the skin on her hands too.
My advice is to keep looking, keep trying, keep asking different doctors from every specialty, and to realize the road will probably be long with lots of false starts, and that’s sadly normal with rare conditions. So it is part of the process of refining our diagnosis over time.
It is a good idea to warn your family and friends that with chronic conditions, it getting the best diagnosis is a long, evolving process. I sure wish had known to do that. I have a brother who lives out of town and doesn’t see my feet or my pain - he believes I am a crazy faker with incompetent doctors and made up illness.
But perhaps most importantly, keep looking for something that helps you deal with symptoms. If a certain cream helps, or cooling device, or super soft, cool cloth to rest your hand on… keep finding ways to adapt.
One more thing that helps some people with all kinds of issues, I read a fascinating article about it several years ago:
Start a diary where you list things you are exposed to, and also your general mood, and your diet. Soaps, shampoos, pets, illnesses, vacations, etc. And with you, perhaps the weather as well? Just record what you can over time, and each day list the severity of your symptoms of your main affliction. Like a scale of 1 to 10.
Then graph your severity over time, and then look at those spikes where it was starting or was bad. And look at all of the things that happened, or combinations of things, or changes, that occurred just before.
Pay attention also to what made things better, even if these are just coping behaviors that make you feel better in other ways. But that is important.
Some people found that geography affected them. One person found that knitting helped her stay away from alcohol much more easily. Someone else found out that they were allergic to a combination of their favorite tea and pet dander within a half hour of each other.
It’s a lot of work but can help identify causes, things that help, and things that make it worse.
That’s all I can think of, but I hope you get answers and find things to make is more bearable!