I have not said it much in public, but I think I can’t keep it mostly private anymore.
For the past 1 year-plus (since April of 2022), I have been afflicted by a nasty skin rash that has slowly migrated from my neck and arms to my hands, and has stubbornly stayed there ever since.
I have started seeing a doctor for it since late last year, but it seems like nothing is making it go away for good.
I've been where you are xx I can tell. you what I've done and hopefully it can help you.
Yes, I am Autistic and I used to have Eczema which disappeared by my 20's and was, unfortunately, replaced by Psoriasis.
My Psoriasis started it was only the size of a small coin, but within a couple of years it had spread to pretty much my whole body and both sides of my face.
I felt I looked like a Marvel Villain.
1/5 #Psoriasis
@eonity
In real life I have never seen anyone who had it as bad as me. People would move away from me in shops, or get up and move away if I was in a waiting room. It used to bleed.
It was an incredibly tough experience, which continued for years.
I found it fascinating how much store people put in 'looks', no-one could see past my skin. It was incredibly disappointing.
However, that's not where the story ends!
2/5 #Psoriasis
@eonity
My Dermatologist offered me treatments, but I was told that the more effective they were, the more toxic they would be. I didn’t want that, to me, it was ‘only my skin’ so I struggled on with Sorbolene (you can buy it in huge tubs from the chemist) which I would slather on my skin, and (don’t laugh, it works!) then wrap it in cling wrap (plastic wrap you use for food) then put on flannelette PJ’s over the top. This would help a bit.
3/5 #Psoriasis
@eonity
My hands used to look like yours in winter, (and it is SO painful, they would just spontaneously develop all these cuts!) but there is a soap they use in hospitals called ‘Microshield Handwash’ which has been wonderful for my hands. You have to buy it from a medical supply shop tho.
About 8 years ago I suddenly developed terrible pain in my joints, I had been running every night, then suddenly I couldn’t walk.
4/5
@eonity
I had developed Psoriatic Arthritis, which they treat with some heavy duty drugs. I agreed to take them, and they told me that a side effect is that they ‘cure’ skin Psoriasis, and it's true, my skin is now clear!
You can take these drugs for skin Psoriasis as well.
I am on a 'biologic' weekly injection called Etanercept, and also used to be on weekly injections of Methotrexate; they work!
@autisticbookclub so sorry to hear about your experience. And thanks for all of the info too; I will definitely discuss this with my skin doctor and see what they suggest. In the meantime I will see if I can find that “Microshield Handwash” you mentioned and see if it helps with my skin issues.
Also, great to hear you are feeling better now! Gives me hope about my own situation here.
This rash has badly affected the quality of my life; I’m unable to focus on getting my photography art and associated work done, and it has gotten in the way of many other things as well. For example, I would really like to snuggle up to my plushies for comfort, but because of the rash, and the bleeding/weeping, I’m unable to do so without dirtying my precious plushies.
There are many other examples as well, but I will spare the details of those as I could go on forever about those.
I have been seeing multiple doctors since at least the end of last year for this issue, but no matter what medicines or creams I try, the rash won’t seem to go away completely for good.
Right now it’s my hands that are affected; the rash has cleared up otherwise on other parts of my body.
As you can see in the first picture, there’s two patches on the back of my right palm that has stubbornly refused to clear up. It does seem to get better when I use my prescribed steroid creams, but the moment I stop them they start coming back with a vengeance.
The other 2 pictures show the situation on both my right and left hands (respectively), and they aren’t great either.
Prior to this rash, my hands has always been prone to drying out and repeated episodes of skin cracking. With this rash, it has not only left my hands dry and even more prone to skin cracking (see pictures), but with lots of itchy, inflamed areas and lots of flaking skin too.
The pictures below show all the skin cracks, and believe me when I say that this is actually much improved from just a few days ago when it was covered with dry skin flakes.
All of this is causing a lot of weeping and bleeding on my hands, and it has made me risk staining anything I handle with my pus and/or blood, not to mention the risk of further infection when I’m out in public.
You can see how this really affects the way I live. I can’t touch anything without worrying about whether I will leave my blood behind on it, be it my computer, my bed, my clothes, or my plushies etc.
A part of me wondered if this had to do with my autism, and apparently a reputable source on the ‘net states that autistic people are much more likely to have skin issues like eczema or psoriasis.
Which starts to explain a lot. See, about a decade ago I had an episode of eczema in another part of my body (which still occasionally cause minor problems but is otherwise not an issue anymore), and as a child I used to have random hives outbreaks too.
I seriously feel like I have been dealt just one extremely shitty hand in my life. Not only do I have to deal with my autism and all of the discrimination it brings, but I also have to deal with lifelong skin issues that leaves me itchy and unable to mentally focus on getting even comfort, let alone what I want or need to do.
As if my autism isn’t already enough in mentally knocking me down several notches.
Right now I’m not sure what else to do, other than to ask: are there any other #ActuallyAutistic people who have to deal with these skin issues as well? How to you manage to make them go away for good (if you did)? And if there are any skin specialists on the Fediverse, I would like to hear your opinions as well.
@eonity@actuallyautistic If you are talking about eczema-ish looking stuff, qtip on some selsun blue let sit for 15min or more, then soaks in tub IANAD but a doc did suggest trying this whdn I told him I was a bit worried about side effects of other stuff
@otheorange_tag@actuallyautistic ah good. Will keep an eye out for creams or other topical products with that ingredient if I drop by a pharmacy or the like.
@eonity@actuallyautistic there are other creams that work better, but as long as I can keep from scaring the kids I tutor, or my wife, this seems more economical and safer? Not sure
@eonity my dad had similar spontaneous cracking and itching on his palm.
It required coating with silver sulfadiazine cream and a glove to help keep it covered until it healed fully.
It did come back eventually but years later, and the same thing was done again to resolve it.
From a cursory search it seems like silver sulfadiazine is used as an antibacterial cream; I have been suspecting that my skin issues could be bacteria-related. I have an appointment with the skin doctor later this month and I will insist they do a skin biopsy to check for that, and discuss this with them if it does turn out to be bacteria-related.
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