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Undiagnosed Mystery Debilitating Medical Condition (Palms and Soles Skin Deterioration)

Simon8Simon8 Posts: 12Member Connected
All I am looking for is anybody who has ever heard of anything similar. 

The skin on the palms of my hands and soles of my feet has deteriorated to the point where I can't walk, hold or pick anything up. I have no skin problems on any other part of my body or any other symptoms. I have seen multiple doctors, tried multiple medicines and drugs and even extremely strict dietary changes. Blood and skin tests have returned negative results on fungal and infection. 

The skin is dry, brittle, flaky, painful and itchy all of the time. Any contact with anything is extremely painful, even just a light splash of water. I can't go anywhere or do anything, sleep is very hard, and I have been suffering from this for over a year. Some drugs/medicines I have tried have made things worse, most have had no effect at all. 

I am a 34 year old male. Thank you for reading. 

Replies

  • LaughingLollyLaughingLolly Posts: 58Member Connected
    My mum has hard pal me with painful calluses and it does not relate to any work she does. She can not cream it and it can break. Now she has also got internal keloids. No explanation. I suggested she go and see an expert or connective tissue disorders such as Dr Karim at Harley street. 
    A laugh a day keeps the psychiatrist at bay. 
  • Simon8Simon8 Posts: 12Member Connected
    edited February 25
    Thank you for responding @LaughingLolly. Does she only have the calluses on her palms or soles? And do they appear on both hands/feet at the same time? Sorry to hear she struggles with this - it must be awful for her - and I wish her well. I'll obviously share here in future anything I find out from anywhere. 
  • LaughingLollyLaughingLolly Posts: 58Member Connected
    @Simon8 no as far as I know the calluses are only on the palm but I notice her foot soles are also hard. My son gets severely scaly hands which bleed but no other eczema and I have peeling feet that look sunburned all the time but I use a wheelchair most of the day so they can't be. I don't know if all our skin things are related at all but I have wondered because although they all look slightly different it's weird we all have something. My mum's look like monkeys palms and appear to have a texture which is less than 'human' to them, my son's looks like two gloves full of dermatitis and my hands are normal but my feet looked sunburnt and peeling. The rest of our skin is beautiful thouvh. Me and my mum have both developed clumps in our muscles too around the joints so they look bunched up and I have nodles in my muscles with some hard muscles so hard it raises the skin and my mum has lots of fatty lumps. I can't  help wondering if our weird things are in any way related .I notice I waddle when I get up from my wheelchair, my mum  waddles  when she gets up off the sofa and my nan also did this when she got jp. Yet none of us have arthritis. I wonder if there are clusters of inherited  things people just don't find because it gets Palme palmed off as nothing much (excuse the pun)!!!
    A laugh a day keeps the psychiatrist at bay. 
  • Simon8Simon8 Posts: 12Member Connected
    edited February 25
    @LaughingLolly - I am grateful to you for sharing this (especially your palmed off pun, of course.) Big pun fan, me. You are the first person I have encountered anywhere - or heard of, even - who has confirmed long-term skin problems on palms and soles only, when the rest of your skin is fine. Beautiful, even! It does seem for you that there might be an inherited thing. If infection and fungal can be discounted, those working on this around me suggest that it points to something with our immune systems. And what I have read from dermatology experts is that there are often multiple things going on in the hardest cases to diagnose and treat. Any which way, thank you for sharing your situation and I hope we can find something out which helps you and your family. I have found that topical creams and gels don't work for me, but it might be partly because the skin on our palms and soles doesn't absorb these things very well at all. The description of your son's hands sounds very similar to mine. I have tried a cream called CeraVe (Moisturising Cream) and although it hasn't made the problem go away, at least it soothes a little, absorbs well and doesn't leave my palms greasy for hours. I don't know if it would help at all, just want to suggest something which might be worth looking into. My palms haven't reached bleeding stages yet though, so your son's problem could be very different and I should be more careful suggesting anything. 
  • LaughingLollyLaughingLolly Posts: 58Member Connected
    No but it's reminded me to go back again. These problems are so hard to solve. I think your case sounds much more like my mother though than my son. I feel it's coming from the inside and not the outside. But do doctors have the ability to treat complex difficulties like this? I don't find they have the interest in it. Otherwise I suggest l looking up skin conditions or tissue and immune conditions and then getting advice from support groups until you find out why. Also, find a good specialist usually privately and save up and get help. N HS aren't always brilliant 
    A laugh a day keeps the psychiatrist at bay. 
  • Simon8Simon8 Posts: 12Member Connected
    Yes! Exactly! I totally feel like it is coming from the inside and not the outside, too. Like the skin is just how the actual problem reveals itself. 
  • Ami2301Ami2301 Posts: 4,987Community champion Disability Gamechanger
    Hi @Simon8 sorry to hear what you have been experiencing. Did this just suddenly start happening or did it occur after something? Have you been referred to a dermatologist?
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Simon8Simon8 Posts: 12Member Connected
    edited February 26
    Hi @Ami2301, it began for no apparent reason with 3 small itchy and rough red patches on one foot over a year ago. I hadn't experienced anything like it before. For a few months it didn't get any worse. Then the same appeared on my other foot sort of in symmetry and very quickly after began to spread and then appear on my hands, again spreading sort of symmetrically on both. That's when I sought help beyond pharmacists and discomfort become pain and debilitation. 

    My GP (rightly) had to try me on drugs to discount the most likely causes, but sadly that made things worse for me. After my skin test results came back negative for fungal and infection (microbiotics?) was when I was referred to a dermatologist. Despite my inability to move, go anywhere or look after myself, I am not considered priority, so it was an 18 week waiting list. Then I got really unlucky and my specific appointment date was cancelled by the hospital shortly beforehand. Obviously tried what I could to get an earlier appointment, but I'm now at the back of the queue again waiting for another date with a specialist. I have to be a patient patient - haha. 

    In the meantime I'm here and doing research online to learn as much as I can about my unusual symptoms so I'm best placed to help the dermatologists to help me when I get to see them. Actually, here in the Scope community in less than 24 hours is my first breakthrough in that someone else at all has experienced/encountered anything even close to what I have in terms of only palms and soles effected. (Or is that affected?) 

    It is hugely helpful that you and others ask me questions about this - even if you can't suggest anything - because it helps me consider and prepare for what the dermatology team might ask me when I get to see them. Thank you once more. 
  • CockneyRebelCockneyRebel Posts: 5,235Community champion Disability Gamechanger
    I had a problem with the soles of my feet some 12 years ago. The skin became so hard that it cracked and bled. It was almost like armour plating, I could not wear any type of shoe and only managed to walk in extreme pain with the aid of sticks to take the pressure off. There was nothing the GP could find but it eventually cleared up after about a year.
    If I may make a suggestion, ask your GP about DMSO. This is a solvent that is easily absorbed by the skin and will carry with it anything that is also on the skin, it might help with moisturising. Because of this property absolute cleanliness is essential.
    This is not a medical recommendation as I am not qualified to give one. I would suggest that you do your own research and talk to your GP, although DMSO is little understood at this moment in time
    Be all you can be, make  every day count. Namaste
  • Simon8Simon8 Posts: 12Member Connected
    Hello @CockneyRebel, Because of your post here I have immediately gone a-hunting around the web for information on DMSO and read articles on it. I had not heard of it before at all, and it is indeed an intriguing substance, particularly in relation to the inabsorbent qualities of sole and palm skin and its super-absorbent properties. I will consult with medical professionals on DMSO and see where it leads before I consider trying it, but I thank you greatly for bringing it to my attention. Dimethyl-Sulfoxide-tastic, my friend. 

    It must have been a horrific, painful and worrying time for you 12 years ago, and I can perhaps empathise and sympathise even, but well chuffed for you that it cleared up in the end. And I totally get the shoes thing - can't even get socks on without doing myself serious disservice. Cheers for sharing this with me here. 
  • Simon8Simon8 Posts: 12Member Connected
    Hello folks,

    TalkHealth in association with The British Skin Foundation have currently got an online clinic forum open with expert Dermatologists answering skin problem questions: 

    https://www.talkhealthpartnership.com/forum/viewforum.php?f=1134

    You'll have to register to post, and be quick if you're interested as the forum will soon be closed and is unlikely to open again for several months. 
  • Sam_ScopeSam_Scope Posts: 7,348Administrator Scope community team
    Hi @Simon8
    A TV company have been in touch who are making a show about helping people get undiagnosed or rare conditions diagnosed, you might be interested in this post.
    Scope
    Senior online community officer
  • Simon8Simon8 Posts: 12Member Connected
    Hi @Sam_Scope
    Thanks for the message and link. This has the potential to really help me out (even if it's a long-shot) so I am very grateful to you for spotting me on here and taking the time to point me in this direction. If you can see a way in which I can help out in any way in return, please let me know. 
    Thank you 
    Si 
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