I hope you are all well, or as well as can be at least.
I got checked into hospital yesterday - over the past few weeks, every knuckle in my hands has become red, swollen and really sensitive, plus all these blisters appeared...about 25-30 across my hands. Seems they appear in every area when any part of my hands and fingers touches anything...then they don;t go away. They grow, get really sore, then might get a bit like a callous, or have the skin start to peel. Then, if they are on skin folds in the knuckles, the skin starts eating itself and cracks appear. Not fun.
Please, have any of you had similar?
Anything you can share that might help my doctors and me?
For background, I got diagnosed with EM in August 2013. Started in my feet (Jan 2013, and we didn;t know what it was), then went to hands (August), nether regions (August), and then has progressively spread up my legs, on my bum and in my arms.
Sounds horrible David but I am glad you are recovered enough to be working that iPad. The worst my hands do is get dry and cracked so it is not something I know anything about and I can only wish you well. I hope someone between here and Australia can give some input. Our friends across the water are hopefully in the land of dreams right now but you may get some helpful response later when they come back online.
I get splitting of my skin on my knuckles. In my case it's because of psoriasis. I put a tiny bit of Vaseline on them and that helps reduce the amount of splitting.
Your problems sound a lot worse then mine, though. I hope your docs are able to give you some good help.
I am so sorry Dkel. It's not like you haven't had enough already!
Are you home from the hospital? I wish I could help you with an answer but this isn't something I have gone through. I have had on a much smaller scale intermittent issues with skin sensitivities where I was suddenly sensitive to latex and any thing sticky like band aids and those patches you wear when you get your heart checked. After just a few minutes of exposure My skin would start pealing and would turn raw and painful and I would get blisters or sores but mine would go away after a few days. I would have to gloves under my dish gloves or I would be covered in sores and broken skin. I had to wear some sort of dish gloves to put my hands in water because even without exposure to latex my skin was just cracking everywhere I had wrinkles or folds in my skin as if there were tiny cuts all over my hands and it hurt like a bugger to expose them to dish soap. I have never had a problem like that before and it just suddenly came on. It lasted about 3 months then suddenly it just stopped happening. I was tested by an allergist and they said strange enough I wasn't allergic to latex or anything else they tested for! I would have this reaction but they said it wasn't an allergic reaction and called it a sensitivity.
I hope you are getting better. Please keep us updated.
I have the same problem to a somewhat lesser degree. I put Olive Oil on my fingers everyday, and every few days on my toes. I have used Nitro-Bid paste on my fingers to get a break from the ice coldness of them, and I use Lidocaine ointment sometimes on my fingers. But its a constant vigilant monitoring and guessing game of which one may help at the time, or may aggravate it at the time. And I get sick of my fingers always feeling oily or gooey from the topicals. I wouldn't care if I got significant relief, but at best it is temporary-very temporary.
I sincerely hope you find some help in the hospital. I have begged doctors to admit me to a hospital. I have 3 insurance companies, and still can't find any doctor to admit me.
I want to know who is in MY hospital bed that I should be in!!
Sorry to hear this David - this is not good. You're in Adelaide aren't you? If you need any help with anything let me know and I'll help where I can...
The olive oil sounds interesting for callouses - my feet are a mess! I'll be giving that a go, as the usual cracked heel ointments do absolutely nothing...thanks for the tip Twinkle Toes
Ha ha. It was 12 degrees here at 6 am though the sun’s out so it will soon be unpleasantly warm. Not much difference between your winter and our summer!
I do get cracked, and bleeding hands but it's more like excema exacerbated by hot and dry skin. I deal with it all winter, every winter. As soon as I put my hands in water they get worse. Soap makes them even sorer and redder. The other day I had to use a toilet in a health clinic and I used the soap there and I went from having dry sore hands to bleeding ones in one wash. In summer this is really not a problem for me -- all the sweating and humidity keep me from getting dry hands in the first place. Your hands sound much more severe than mine. And the problem is obviously more extensive but I'll add an experience that happened to me in case there are any similarities:
I did, once, experiencing a peeling face like nearly my whole face had been sunburned but it hadn't. It was flushed red, then I noticed what looked like small pustules on my face, a lot of them on my chin, nose and cheeks. I went to the local gp and he had a cursory look, but did not put gloves on to touch my face, and said 'rosacea.' (He just wasn't interested). And gave me some cream for rosacea. When I got home I had a good look in the mirror (with my glasses on) and touched one of the 'pustules' only to have it break under my finger -- there was no fluid in it, it was completely dry. The 'pustules' were really dry skin that had lifted and broken causing it to peel -- like sunburned skin peels. It happened all over my face and lasted for about 10 days plus. While waiting to get into an appointment with my allergist I started taking my prednisone and h1 and h2 antihistamines thinking I was having an allergic reaction. (my allergist keeps me supplied with these prednisone tabs for when something like an allergic reaction of some other sort happens). I noted (just looked it up) that it went away very quickly but as soon as I stopped the prednisone it seemed to come back.
Eventually I got into see my allergist and she said I'd had a reaction to something - but I don't know if it was true allergy or an 'adverse reaction' and she didn't seem to either. I told her I thought it was the magnesium sulfate I had been taking as a laxative as it caused 'flares' of EM (even though I'd been told it shouldn't cause it -- eye rolling here). Only that this time the EM redness had gotten so bad it moved onto another level involving my face more extremely. She didn't disagree with me on this. Was a bit bemused. But told me that it would possibly happen again??? (It does, but not as bad, knock on wood) And prescribed me elecon cream (I think it was) -- a cortisone cream. Which fixed the problem pretty well. Although, my skin on my face has got a bit raised and rough in the 4 or so years since and has stayed that way. When I have a flare it all looks worse but so far I have only experienced very small areas of peeling which are quickly fixed with some elecon cream. It's one of those questions that no doc I've asked can tell me what they'd call it exactly but when it happens it's because the skin on my face is flaring. My face always flares now as part of an EM flare. It's red and hot and tight today (taking another laxative that always causes it). But so far, knock on wood, the peeling has not been as extensive as it was the first time -- about 4 years ago. It does't sound like there are any similarities between what you are exeriencing and what I experienced except for the peeling but maybe you or your docs will see some similarities.
I hope things are starting to look better for you.