#1 By: Cory Doctorow, February 20th, 2014 13:04
#2 By: ethicalcannibal, February 20th, 2014 13:47
This is a cool article. I hadn't heard of cool ring splints. I have "suspected" Ehler's Danlos. I learned about it here, and finally had something to ask the doc's to check to make sense of my injuries. I have the same swan necked deformity, and dislocate joints like whoa. The latest was my collar bones, which sucks! It's what convinced my doc to get me the genetic test for it, which I tested negative. However, I was told there's a 50% false negative on that. However, knowing about it means I'm much more careful with myself, and have done better in the last couple of years. No new spectacular dislocations lately, which is a plus.
I was wondering, since there will be more folks with this condition reading here, what you guys do for exercise. I had to give up free weights after dislocating my collar bones. I fear yoga and stretching in case that makes things worse, and my PT gal said if I go with machine weight lifting I might be okay. Any one else work anything out that functions? I tried water aerobics, but the pool chemicals destroy my overly sensitive skin so bad, that's right out.
**edited for a typo.
#3 By: Acer Platanoides , February 20th, 2014 13:52
There are some pools which use much less harsh bromine salts and UV for disinfection. Ever tried one of those? I think they're more common as private pools then public, but worth a try if you can find one.
#4 By: ethicalcannibal, February 20th, 2014 14:19
I hadn't realized there was a difference, so I hadn't looked for one. That gives me something to think about, and look into.
#5 By: Tribune1984, February 20th, 2014 16:36
no idea if it makes a difference but there are also ozone disinfected pools. In theory we have one locally but there were some issues with installation/efficacy and chlorine needs to be used in it.
Also isn't skin one of the possible areas of presentation for collagen disorders?
#6 By: Steve Pankow, February 20th, 2014 16:51
#7 By: ethicalcannibal, February 20th, 2014 17:01
Skin can be a presentation issue in strethiness, but I hear my super sensitivity to everything topical might be related. I have skin that stretches like a cartoon. It was my childhood geek trick. I talked to one of the Jim Rose Circus guys about it back in the 90s, but I'm not into piercings or suspensions to show it off. I didn't know what was going on back then. I just thought I was super bendy, and stretchy. Hell, even in nursing school, we all knew something was up with me, but nobody could figure it out.
For me it's pretty mild. The dislocation thing is the worst of it, and it takes pressure to dislocate. I'm trying to build some muscle to help hold everything in place. I'm not sure it's going to be very successful, but no PT person I've talked to has any really useful ideas. This level of hyper mobility is weird for them.
My collar bone dislocation came when I was trying out yoga intensely and doing a lot of free weights. The combo was terrible.
#8 By: Alice Weir, February 20th, 2014 17:37
Yes, I avoid yoga for that very reason. I was an avid social and competitive dancer for years. Believe it or don't, you don't need anything more than your own body weight to achieve 'weight-bearing' exercise. The problem with using weights is that it puts too much pressure on joints that can't usually withstand it. And for aerobics, it's estimated that even running doesn't top Viennese waltz. You don't have to build a lot of muscle - just tone what you have. And that also gets meets the 'no impact exercise rule' as well. Because, even if you go up and come down? That's mostly illusion and you learn to do without any impact. Go sign up for some classes at whatever your local independent ballroom are - you might find anything from Salsa to Tango. See if you like it!
I dumped PT because of the pool chemicals, too. And really, few in that game understand our mechanics. (I got more gains with a highly-qualified dance instructor, actually. They're kind of used to us. We need to stretch, and dance lets us do it!) I won't even use the pool here at home. Many, many of us are chemically sensitive and have all kinds of weird reactions to medications and such. But I live near the ocean, so I have a place to get in the water if I want to. Hopefully, you'll find a solution that suits you.
Tribune - yes, skin is what you see. But collagen is everywhere in the body. It's more than just little joints and stretchy skin. There are also risks for aortic dilation, digestive and vision issues, etc. Even people within the same family who have Ehlers-Danlos can have different problems and different joints that misbehave. Some people have it very mildly, while others are completely debilitated. Some people have the problems with their fingers that the ring splits are intended to solve, others can't stand up without rolling right off their ankles. (Gotta figure - we all got half our genes from the other parent, in some pile-up that creates nearly random effects at times.) However, being rare, not a whole lot of research has actually been done.
Some of us are conducting a genealogical/genetic research project over on inspire.com (the Ehlers-Danlos National Foundation's forums). If you are interested in joining it, jump on in! We expect to be announcing it formally shortly. The challenge has been that markers for this inherited condition have not been located for all types yet. We have good reason to believe that this is the result of multiple mutations in the population causing the condition. So, we'll be looking to verify lineages using both autsomal dna and traditional genealogical documentation (something traditional researchers seldom, if ever, employ).
Goal is to isolate those family groups and get rid of at least some of the variables that have most likely caused research to date to fail. We've found we have people amongst our own group with expertise in various life sciences and health informatics, so....doesn't get any more DIY or 'maker-ish' than this! Only with actual humans, not 'bots. Hopefully, one day, our kids and theirs can be diagnosed earlier and get better interventional treatments so that they can have better quality of life.
Huge thanks for the article, Cory and ask-a-zebra! What a happy surprise, today!
#9 By: ethicalcannibal, February 20th, 2014 20:14
Thanks so much for the info. I know of nobody in the medical community that even knew what to do with me. I found one PT person that was decent, and that's because she's had another Ehler's Danlos patient, and she had some great suggestions.
I really miss weight lifting, too. It was one of the forms of exercise I loved beyond all else.
#10 By: Alice Weir, February 20th, 2014 21:31
Yes, finding knowledgeable medical care is difficult for most of us. (I've literally had several physicians ask me how to spell it.) But, that same site has quite a lot of us 'bendies' from all over the place - including Canada, Australia, and various countries in Europe. It's usually a good resource when you need to find some good care in various specialties.
I'm so sorry about the thing with the weights! Other problems forced me to stop dancing last year, so I know what you mean. Most of us build muscle so slowly and with so much effort that just the idea of letting go for too long....is crazy-making. The guys usually seem to be at a certain advantage in this, since they have greater muscle mass to start with. For the girls, it's kind of a double-whammy...unless you're one of those lucky ones with all the gorgeous muscles. (I only wish I had them!) I broke ALL the rules when I was younger....and I'm paying for it now.
But, do try a couple of dance classes - doesn't matter too much which kind, just go with whatever music you like best. One thing it'll do is slowly retrain your sense of proprioception. And, if you happen to pick one that requires you to learn to spin, you'll gain the tricks for overcoming dizziness, too. We're just...backwards from everyone else. They usually struggle with stretching far enough, while we struggle with holding it all down to something short of a Cirque du Soleil act, lol. And hey - if it's not your thing? There's always Zumba or barre classes, and such.
Here's hoping you find your new fave activity soon! Because, seriously, with all the hassles this brings? I wouldn't want to let any of its (few) advantages go untapped!
#11 By: Cory Doctorow, February 25th, 2014 13:04
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