Does anyone recognise this as EM?

Hi,
New to this forum, but would greatly appreciate any feedback on whether my symptoms match anyone else’s experiences of EM. I’m a 49 year old male, living in Bristol, UK.
For the last 6 years I have suffered single annual episodes that proceed like this:

Day 0. Extreme itching to right hand, starting at wrist.
Day 1. Entire hand goes bright red. Pain and heat.
Day 2. Skin starts to tighten, difficult and painful to bend fingers.
Day 3 - 5. Skin hardens and splits. Peels off in large flaps.
Day 6 - 14. Skin from whole hand except reverse of palm is gone. Skin layer exposed is purple, shiny, sensitive to touch, temperature, dries out easily. Unable to use hand.
Day 14 - 21. New skin gradually heals, then cycle starts again from Day 0, only harsher.

After the second cycle has run its course, I’m usually ok till the next year. This almost always happens between October and December. The most recent episode saw the Dermatology Dept at the hospital take a punch biopsy, which returned nothing significant. I was given a clinical diagnosis of EM, which is how I tracked down this forum. Does anyone else experience similar symptoms to these? The consultants who saw me seemed stumped and pretty much diagnosed EM because my hand looked similar to a picture of EM in a textbook. I’ll try and add some photos to show what it looks like. Any advice would be wonderful.

Hi SteveR,

I am sorry you have to deal with that it sounds real painful. I recognize most of the stuff here, but have never seen or had skin rip off like that as you describe and I have EM only on my hands. It’s the worst feeling ever not being able to move your fingers and to feel almost like you have no hands.

Josh

That is unlike my experience and I don’t believe I’ve heard anything similar. Yours is unlike any presentation I’ve heard described here.

Everything up to your day 3. I’ve never had anything split or beyond that. Are you continueing to itch, rub or irritate the flared area after the flare begins? As soon as I see the flare starting I do not even dare run a towel lightly over the area or it will worsen.

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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:

https://www.dermnetnz.org/topics/exfoliative-keratolysis

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!

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Thanks Cindy2 for your help. I am still unconvinced by my diagnosis of EM, and with a bit of research found descriptions of keratolytic winter erythema most closely matched my symptoms. This seems to be a rare genetic condition, mostly associated with people of Afrikaner descent in South Africa (as far as I’m aware, I have no family history in that region). I have faith that taking a daily aspirin may keep a recurrence at bay, but am dreading the approach of Winter if I’m honest. The last cycle has left the skin on my right hand feeling tighter and dryer than my left, and I fear that another bout will only make things worse. Sadly, KWE apparently has no cure, but I will definitely pursue another diagnosis if it recurs this Winter.

I will try to upload some photos of the last episode.

I’m glad you have more info, for what its worth…

I hope the aspirin helps, and you have an easier season and lots of support.