I just watched a video where a person demonstrated criteria for joint hypermobility and how ehlers danlos syndrome shows on the skin and I had everything. o.O
but *knock on wood* as long as it's not a health problem I don't have to investigate this further..
@distelfliege it's certainly a good reason to keep active if you can and be mindful of overuse injuries, my experience of EDS is that deconditioning is the worst thing for it (but it's really a very varied thing, what is true for me is not necessarily true for others, and I have various comorbid stuff going on which exercise also helps)
@artsyhonker oh, thanks for explaining! :) I'm pretty active and I think I'm also an athletic (chubby) type so that is good for me. I can't run because of my knees, I had so many injuries in my teenage years that the knees are both really messed up. I couldn't walk long disctances. but I can ride my bicycle
@distelfliege Cycling has been a really important way for me to maintain some fitness when I couldn't walk far or fast without pain (knee issues, then shin splints, then plantar fasciitis). When my knees eventually complain too much about the cycling, I plan to buy an electric assist bike.
@distelfliege At the moment my walking mobility is improving, but only because I made a big effort to strategically increase it. I have more foot and hip damage than knee damage though. Every body is different and the important thing is to do what works well for you. I've been told by multiple physiotherapists that I must not run unless I'm about to be hit by a car or something.
@artsyhonker that's good! I'm glad to hear your strategy works! I mustn't run too.. I have shoulder and finger joint issues as well, which is a bummer sometimes because I love crafts and I'm a craftsperson and I need my fingers all the time.
@distelfliege I suggest trying plastic ones first, silver is expensive but more comfortable and stronger. Jussec, getting big computer so I can dig out some links...
Silver splints, over-the-counter from a UK maker: http://ringsplintsbyzomile.co.uk/ I don't think she ships to non-UK but no reason someone else couldn't
Custom silver splint designer in Utrecht: https://www.silversplints.com/en/ I got my thumb splint from them, it's great, but was expensive because I had to have it prescribed by a hand therapist.
With all of these splints there is some loss of manual dexterity, which is annoying. After a while you get used to it, but tying shoelaces is still way more annoying than it used to be. But I wear a lot of splints, you may not need to splint as many joints as I do.
Some hand therapists think splinting is a good idea and some are very anti-splint. I use my hands more with the splints and they are getting stronger as a result.
@distelfliege There are splints for trigger finger too, I think the We Design site is probably the best of the links I've shown you. There are also some American ones.
In general, splints that are flat are more comfortable than those made with round wire; something to bear in mind if you're exploring various options.
@distelfliege It's worthwhile to go through the whole official criteria (Beighton, Brighton, and other criteria) because EDS is a degenerative condition. The more hypermobility you put your joints through, the worse they're going to get (if it's EDS). There can also be major organ involvement (I'm currently dealing with my stomach not absorbing nutrients properly, as well as other "fun" GI issues. Have already had my gallbladder removed as well, and regularly pass kidney stones).
@ThisQueerBashesBack thanks for the tip! I knew all my life that I'm hypermobile, I only learned through queer disability activism communities that there can be a condition connected to that. If I should have eds it would be a very mild form I guess. I'm already 43 and mainly have issues with the hypermobility stuff. (joint degeneration)
but I'll keep an eye on that and if needed, I do know what to look for and have it checked, thanks to you all! 💫
health, eds Afficher plus
@distelfliege There are splints for trigger finger too, I think the We Design site is probably the best of the links I've shown you. There are also some American ones.
In general, splints that are flat are more comfortable than those made with round wire; something to bear in mind if you're exploring various options.