ED'S and skin fragility

Has anyone had experience with skin peeling? My son plays guitar but as soon as the skin begins to harden (necessary to play) it falls off and it is too painful to play. The skin on his feet also peels off in thick layers if his feet get sweaty. My daughter also peels from head to toe after swimming (in an indoor pool).

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Kate, sorry if I came off as snarky. I'm 52, been playing since I was seven and I'm a mess. My hand failed six years ago onstage with a two-time grammy nominee in front of two thousand people.

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Hi heatherpdc, my heart goes out to you. I've seen my son go from a fun loving, active little boy with no limits to what he could do to a teenager who is in agony and dragging himself around like a 90 year old. I wish I could go back armed with the knowledge I have now. By the way I have learned more from the wonderful people on this site than any of the doctors we have seen. I understand what it means to want your child to be happy and be able to do the things he loves to do. The only sign of something wrong was at age 5 when he started waking at night screaming that he couldn't move as his hip was "locked". Then at age 10 he began having serious pain after soccer or athletics. We did not get a diagnosis for many years and in that time I think a lot of damage was done through continuing to play soccer and pushing through the pain. I had people saying "don't wrap him in cotton wool", and telling me he had to toughen up and that his X-rays, mris and bone scans were normal so not to worry. I have learned that my instincts as a mother mean more than any diagnostic test or blinkered "expert" quoting a text book. Trust your gut and your heart and go for what gives your son joy, being cautious about activities that can cause ligament damage. Number one rule, keep working at muscle strength, whether it is in the fingers and wrist for guitar playing, or spine and pelvis (which is where my son is in the most trouble) and don't keep going when it hurts like we did. There really is a need for a broad, multi-discipline approach with eds. Please remember that everyone is different, I don't mean to scare you when I say how severe my son's problems are. My daughter also has eds but is not as severely affected. I believe this is because she trained as a ballet dancer for years and has developed super strong muscles and she is much lighter. I have heard and I believe that keeping body weight as low as possible is a plus for this condition as there is less strain and impact on the joints. If I could go back...if only, I would keep my son doing regular, gentle strengthening for every muscle and keep his diet freakishly healthy and calorie limited. We also use a lot of supplements now which I think are helping, but I wish I had known all this years ago.

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My brother has been playing for over 40 years. He always has great pointers for my son, ( has VEDS) who plays guitar, drums and other instruments. * see VernonFischer.com
Music and art are our sedation. My fingers split too easily to touch metal strings, nylon causes me pain also. I am a selective listener and love all the people who make beautiful music. Thank you.

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Kate and Bassman, you guys ROCK! You have helped so much and your insight and knowledge is invaluable. Wish I could invite you over for dinner but it's a bit far lol. I feel like there is hope now that my son will be able to improve and do the things he loves if he follows your advice. He is talented too, plays with a sensitivity and feeling that I don't think is common. Bassman, your idea of a guitar and eds thread is great, I'm sure there are others who would benefit greatly from your knowledge and experience, and most importantly, just knowing that someone cares enough to take the time to contribute to others in this way! Good luck with the nerve conduction and MRI, let us know how it goes.
Hope you are both having a great weekend :)
Juliann

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Those gorilla tips sound fantastic!

My nine-year-old son's skin peels off very easily, too. Especially after swimming. He's just starting to learn to play the guitar.

Can/will those of you on this thread that play guitar please offer some suggestions re: effective ways to protect yourself while learning to play? He is just starting to learn basic notes, but already has an extremely difficult time with his hands/fingers in general, and can barely hold a pen or pencil in class.

I want to encourage him to do what makes him feel joy, and to try things he's excited about (with EDS so young, he feels pretty inconsequential and powerless a lot of time, as he can't take part in many of the sports teams his fourth-grade friends are highly involved with). I'm hoping that learning a bit of guitar may bring him some happiness, without too much injury.

As a mother, I want to help him gain strength and belief in his abilities, while also educating him with basic knowledge handed down from other EDS'ers who've "gone before him" so to speak. Any suggestions would be greatly appreciated!

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JulsB - Thank you. Keep your spirits up. I know that I've been lucky, so I try to stay positive about things and life isn't always positive, nor does everyone experience things the way I do, but I was at my worst between 18 - 20 (so far - and I'm only 26, so this only means so much), so there is hope. Once I accepted that I had limitations and that I had to do things differently than others (part of that was growing up, lol), my depression lessened, which made a big difference in how I felt as well. If he thinks about what the potential negative affects of doing something are before doing something, sometimes there are ways to counteract them in advance - like using the fingertip protectors every time - therefore before his fingers start to peel instead of only using them when his fingers have started peeling again. Like me not opening ridged bottle caps because I know they rip my skin off. Learning those mechanisms will be a huge help for him.

Bassman - I have no disillusions about how my EDS is going to affect me in the long run and I'm very sorry for the difficulties you have playing. I also know that I've been very lucky, so I live in the now (for more reasons than my EDS, but it is still pertinent). Keeping positive makes a huge difference. I refuse to give up. As I've focused on building my muscles instead of my limitations, I've actually improved my functionality. When I was a teenager, I couldn't use my hands to even flip a light switch and I had to walk with a cane, so I do empathize. I'm not trying to dispute what you're saying; I'm just offering an alternative viewpoint and some hope and support. Just like what you're saying, being able to play isn't going to last forever for any of us EDSers, so why not give this kid whatever support possible so that he can play while he has the ability? For all you or I know, playing could've extended your ability to use your hands as well. You might've lost use of them if you hadn't worked them so much playing guitar - you never know. You are also correct in that playing the piano has probably made a difference for me since I don't only use my hands in the position for guitar when I'm using my hands in a demanding way. Either way, I'm just saying that I apologize if you feel like I'm attacking your response in any way, because I'm not. EDS has made my life very difficult and different from most people's, as you know. But I will flat out say that EDS isn't going to kill me and I've survived something that did A LOT of damage and almost did kill me, so I know a thing or two about the affects of positive thinking. So all I'm trying to do, is offer my young, yet extremely experienced view, and my positive support.

BTW, I also agree that guitar straps are evil.... and a VERY bad idea for us.

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I'm very lucky in that UCONN has a musician's clinic. My hands are in the best hands in the world. I'll start an 'eds and guitar' thread and post whatever I learn. I have nerve conduction tests on Monday. MRI on the left shoulder and right elbow after that.

I saw Jaco from the edge of the stage, maybe six feet away and yeah, there was something inhuman about his hands. I have ridiculously small hands for a bassist and the flexibility was a huge advantage before I wore everything out. I could do things that 'normal' players couldn't but it's like Flowers for Algernon. The special gifts are time-limited.

The skin on my feet peels but I haven't had a problem with my calluses. Forty years is a long time to look back but I don't remember having extra difficulty with them when I was younger or even when I was learning to play. At nineteen, he's beyond the point that youth would be a factor. His calluses should hold. As Kate said, taking it slow (and methodical) is a key. With calluses, playing too little and playing too much both have a negative effect. A certain amount of pain is inevitable and necessary. If he stops playing at the first sign of pain, he'll never develop calluses. Play through the pain too much and he'll damage them. The right balance is as unique to him as is his skin.

He should probably avoid sliding from note to note. Once you slice the fingertip, it's back to square one. Heavier strings might help. A .009" high e string is more likely to slice the fingers than a .011" string. I suspect that playing bass helped my guitar playing calluses. The larger string distributes the forces over a larger area. You really can't slice your finger open on bass strings. I do still play both electric and acoustic guitar but they're second and third instrument.

Playing multiple instruments helped extend my career, I think. The motions are different enough that they're not perfectly repetitive. What one does to the right elbow is different if one is crunching chords with a pick or slapping with the right thumb. The tradeoff was that now everything is hitting me at once. Right wrist from fingerpicking an acoustic, left from holding barre chords on the electric.

What I would tell a young guitarist with eds is:

Guitar straps are your worst enemy.
Learn to play piano or harmonica or something in addition to the guitar. Distribute the abuse rather than focus it.
Git 'er done. Do what you want to do with music sooner than later.

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Try corn huskers lotion for finger picking guitar players. The peeling is what I see on my feet after callouses form. Try to take some care before they get that bad. Guitar players need roughness unless they play with ceramic nails like my brother who plays classical Segovian type guitar. See a podiatrist.

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Kate, you have been really helpful and your wonderful, positive attitude is so inspiring! We are really struggling at the moment so it means a lot :) I wish you all the best with your music making :)
Bassman thanks for your advice :) I think my son's technique is developing to suit his limitations in a way... But then again that might be wishful thinking. He is having trouble with his left wrist lately and you are right, his thumb does cramp. It will be heartbreaking if he has to give this up as well. He has been forced to give up so many things he loves doing already. I don't want him to do more damage though...he kept playing soccer after being advised not to and now he can hardly walk and is in severe pain every day, and he is only 19. It is so hard to know what to do, especially when the doctors don't seem to know much at all here. Hey I wonder did Jaco Pastorius have any hypermobility issues that affected him adversely, did you ever see the way his thumbs used to bend?

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If I had the hands, shoulders, elbows and wrists that I had when I was 26, I wouldn't be here. I'd be coming home from a gig.

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Anytime! Glad I could help and I hope they work for your son!

As for Bassman's concern about your son's joints... Its very possible this will be an issue - but on the other hand (no pun intended and hopefully your son will be like me in this instance as well) - I've found that the more I build up muscles around my joints, the more stable and less painful my joints are in general... including the ones in my hands. As long as I don't overwork my hands when I'm practicing (which takes knowing your limits, which your son will learn if he hasn't already), I have actually found that playing (both guitar and piano) has helped me counteract the joints bending backwards with only the slightest bit of pressure, because I consistently work the muscles in my hands and fingers.

I also have the opposite issue as Bassman when it comes to playing chords... I find that despite having smallish hands, I can spread my fingers and bend my hand and wrist in ways that make it easier to reach chords my hand size would normally make difficult. Obviously on bad days I cannot play and there are times where I don't think I'm having a bad day until I pick up my guitar, but overall I don't have too many issues with my joints in my hands and I can bend my fingers backwards until they lay almost flat against the back of my hand, so just make sure your son is taking things slow and doing what he can handle and hopefully he'll be able to use playing the guitar to his advantage like I do!

:o) Kate

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I'd be more worried about joint laxity in his fingers. If the finger joints bend back beyond their normal limit, they can't absorb the static load of holding the strings down. The muscles around the thumb try to absorb it but can't and cramp. Some chords will always be very hard for him to play. I switched to bass at fourteen because it felt 'right' where the guitar felt very, very wrong.

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Wow Kate! that's fantastic! I have never heard of Gorilla tips! Thank you so much! Your feet sound just like my son's as well, large chunks would just fall off after he played soccer, without any pain or bleeding. There really does seem to be a lot of variation on the text book descriptions of EDS "diagnostic criteria". Momofluke, thanks for your reply, I am convinced that this is part of the EDS now, even though all the doctors here stare at me blankly when I mention it.

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I play guitar as well and have a similar issue - the strings actually slice my fingertips open as well though. I also have issues with my skin peeling on my hands and feet when they get wet - I can literally scrap chunks of it off, but it doesn't hurt. Opening a ridged bottle cap also peels skin layers off for me too aah17. I haven't found much of an answer for helping my skin when its wet, but I do have other people open bottles for me now, despite that I hate asking for help!

As for playing guitar... I have found what are called "gorilla tips". They're silicone protective covers that go over the tips of your fingers so that your skin doesn't peel. They're designed for beginners to help develop calluses over a longer period of time, but I just use them for the protective layer to keep my fingers from being shredded. The good thing is that you can still feel the strings through the covers, which is important. You can buy them on amazon in either clear or blue for about $10/set of 4, depending on what size he needs. If its still happening with one set per finger, try two. I have days where I can wear one set and be fine and others that I need that second set for an extra layer - its just harder to feel the strings with the second set. I hope this helps!

:o) Kate

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I have always had peeling feet. My son and daughter do as well. It seems to have gotten better as I get older but I think that's because I take really good care of my feet.

The odd thing about my son is that he seems to get abrasions very easily and they don't heal. He has light scars on his back from when my husband was play wrestling with him and dragged him by his feet on the carpet. Last week, he was playing with his sisters and the same thing happened. He has 3 ugly brush burns on his back and they aren't heeling.

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No I don't have much to offer for the issues. If anyone else does id like to know. My lips get a little cracked or peeling sometimes..not a big deal. My daughters do but she bites her lip a lot. My hands crack and bleed a lot more than other peoples...a good sugar scrub helps!

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aah17 thank you. I am starting to realize that this condition varies a lot with symptoms and doctors often don't see this, especially here in Australia. Have you found anything to help with the skin issues? Do you also have cracked, inflamed lips much?

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My skin on my fingers and my feet peels of in big deep chunks. Opening a bottle of pop rips of skin. Walking on carpet an rip a huge chuck of toe off. Its gross. It burns...doesn't bleed though.
I have easy brusing and easy cuts/scratches...but no other skin involement. Actaully my sister and I are the same..our legs and arms bruise crazy easy but our faces and chest...u prob couldn't bruise if u try. My genetisist dx'd me w eds but said I'm in the one 2 3 area..didn't give me a specific label he said w my skin its hard to pinpoint and doesn't matter. If I got to label myself I guess id say I'm type 3 with 2 crossovwr..

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Thank you for your reply QsMama! It is so interesting to hear of someone with similar symptoms. None of the doctors I have spoken to seemed to know what this meant. In fact I have had some dispute the diagnosis because we don't have skin hyperelasticity. Does your son have any other skin issues? My children both had eczema quite badly when younger, not sure if this is relevant.

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My son's feet peel after they are wet - the doctors thought it was because he was putting socks and shoes on when his feet were wet, but he takes his shower at night, and he doesn't wear shoes much throughout the day (can go in socks in his classroom). He was at a swimming party, and there were large sections that came off. He has classical with hypermobility. My back peels a lot now (not when I was younger, I'm almost 47) - not in full peels, like a sunburn, but when I wash it, it sloths off, a lot. My fingers always seem to "catch" fabric - I keep them super moisterized.

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