One member said it was keratin and another said that the spots don’t resolve unless you clean them out. Here in the U.K. - whenever I’ve tried to ask about this - every dermatologist, without fail has looked blankly back at me and admitted that they don’t know. How can we treat these spots if we don’t know what we are dealing with - it’s mind blowing! My spots won’t start to heal unless this ‘debris’ is removed, which then gives the appearance that I am self-harming. I’m totally frustrated. Has… read more
Answer Summary
Members shared their deeply relatable frustration over the mystery of what fills the painful nodules characteristic of their condition, with... Read more
I'm concerned that by digging into the nodules there's a risk of infection and scarring.
It's a conundrum of a disease. Excess keratin, immune system; so many things to consider. I hope that with continued research scientists will pinpoint the cause.
I was thinking that it was the nerve endings firing that causes the stinging.
I'm glad someone finally said something about what's inside the sores! I've asked two dermatologists and one said connective tissue and the other said broken blood vessels... I think no to both answers. Mine file like something is stinging me or it gets swollen and hurts so bad but once I remove the stuff inside it feels so much better. It's about to drive me crazy trying to figure out what it is though. I don't care about scarring I'm already way scarred up. I don't just get a couple here and there I get them from head to toe. I can only get into see my dermatologist once every 12-14 months due to over booking and it's hard to get into living in a big city. I have many health issues and this just put the icing on the cake.
I rarely leave my house due to the embarrassment of all the sores and being miserable wearing clothes. I sure hope a cure is found because this on top of everything else really makes life hard! I'm truly sorry for everyone that is going through this! Prayers 🙏❤️🙏
Hi Jan.
I’m so sorry that your life is blighted by this dreadful disease. I could have written your letter. I’m not as bad as you, but I can have 20 spots at one time at various stages. I think the stinging is related to the spot itself, as you rightly point out that it feels better when the ‘stuff’ is removed. I, too, am covered in scars.
Do some of your spots ulcerate like mine do? I think that tends to happen more when they are on a sharp edge like the jaw line or collar bone.
I call these spots ‘Satan’s spots’ to reflect how hellish they are.
After I asked my question, I had an AI generated answer which said that it is keratin inside the spots. If that is right, the next logical step would be to discover why we produce excess keratin. I’m working on that.
Thank you so much for your message - it means a lot.
Sending you a hug.
Patricia.