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acrodermatitis chronica atrophicans

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Posted 11/15/2014 8:46 PM (GMT 0)
I'm pretty sure this is what is wrong with my hands. They hurt really bad the skin is bleeding all the time they are burning. The skin is wrinkled my veins are uuge. My hands look exactly like the pictures on google.

I was wondering if anyone here has this? I'm in the atrophic phase if it really is the aca rash. How is this diagnosed anyway? Will me skin always look like this? It seems to be spreading to my knees and my face :(

Nothing I've put on them helps very much. It's hard to play with my kid. My handwriting has changed. It's excruciating to do dishes or wash my hair. Not to mention how ugly it is.
Posted 11/15/2014 10:24 PM (GMT 0)
No one has this?! Is it that rare?
Posted 11/15/2014 10:27 PM (GMT 0)
I've had it, and it has healed when I healed my first set of infections. Keep moisturizing them and be careful with them is all I could do. There isn't much information on this yet, so no treatments for this specifically that I'm aware of. But like I said, my skin healed.

Use gloves when you are going to have your hands in water for more than the time it takes to wash them. I've used coconut oil to moisturize for so long that I don't know what else would work that wouldn't burn.
Posted 11/15/2014 10:41 PM (GMT 0)
How long did you have it for trav? I'm going on 3 years
Posted 11/15/2014 10:47 PM (GMT 0)
I'm really not sure - one of the hazards of having grown up with these infections. Most of what I went through I didn't think was really 'abnormal' as I always had this or that. I know that my skin was 'weird' for a few years, then I realized that it was ACA during a search for something for someone else. So I know that I had it for at least 4 years or so? Likely longer, since I don't really remember any skin changes, except when I developed psoriasis.

As I said, though it went away with healing from Lyme.
Posted 11/15/2014 11:36 PM (GMT 0)
I hope it goes away. My hands are super stiff. They just don't work very well anymore
Posted 11/16/2014 9:32 PM (GMT 0)
Is it from the ACA - as in is it your skin - or is it from inflammation?
Posted 11/16/2014 10:20 PM (GMT 0)
The skin on my hands every single wrinkle has cracked and bleeds. My bed is stained with sweat and blood. The joints get swollen and hurt. My hands hurt even when they aren't swollen. The biggest pinky knuckle on both sides are gradually getting bulkier.

A few of my fingers won't straighten out all the way anymore. All the joints are larger I don't know if it's swelling or what. They feel numb. They don't feel hot or cold on my fingertips I'm always burning them. The other day I reached into boiling water without even thinking to grab a stupid noodle. But it didn't start hurting until the next day when I got blisters.

They aren't coordinated. My handwriting has changed. I don't trust my grip on my cups or a steering wheel. Or holding my son. They feel tired and sore. They turn blue and red and purple. The veins are bulging. The veins are super super blue.
Posted 11/16/2014 10:41 PM (GMT 0)
This is likely inflammation and Neuro Lyme. My hands did the same thing. I used to hand quilt a lot and would sew my hands to the backside of my work. It would freak out a lot of people and was hard to explain!

I used to burn myself a lot too. I also went to only using plastic plates and cups because my hands would just suddenly let go of whatever I was holding on to.

As bad as it seems now, you will likely heal from all of this, I know I did. So hold on to that hope. Healing will come, just give it time.
Posted 11/16/2014 10:52 PM (GMT 0)
Thanks :) it's pretty weird. I miss my hands alot. I hope you're right and they come back.
Posted 11/16/2014 11:05 PM (GMT 0)
My hands have changed, too. Not quite the same as what you describe - no bleeding or dryness. My skin seems thin - bulging veins and look like an old lady's hands. This happened quickly - almost overnight. I also have lost muscle between my thumb and index finger. I hate all the changes that has happened because of this disease.
I have noticed so many things - like my left ear - the inside feels greasy all the time. The top of my right foot has a "thing" under the skin - cyst or bulging vein or tumour - who knows what it is- no point in asking my regular Dr - she will just shrug it off.
Posted 11/16/2014 11:07 PM (GMT 0)
Me too, IHL!
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