First of all, best resource I can give you is The EDS Society, they’re UK based but they’re pretty consistently doing webinars and online support groups, they’re pretty damn instrumental in EDS advocacy.
Given that you say you’re a minor you’re probably gonna be in the ages transitioning between stages, and it’s gonna be rough ngl.
hEDS has three major stages Hypermobility (Early Life), Pain (late teens to 40s) and Stiffness (40+) and the Hypermobility-Pain stage transition is gonna kick your ass, it’s okay. You’re gonna have to accept that it’s gonna set you back a bit, whether that be socially or physically or academically. I had to take four years off for it, but I did just get accepted by university and my shit’s on track now. You might fall behind your peers, but your peers will probably get a little fucked over by life too. There’s no one path for life.
Exercise is very good, just keep at it, a little exercise consistently is better than a lot of exercise intermittently. You’re trying to avoid deconditioning, not really getting gains. Weights isn’t as recommended, I got personally told not to do weights but I’m a little bit of an extremer case, if you can do low impact sports such as swimming that’s way more supportive.
Also training your proprioception and body map is very good to avoid hyperextention and injury. Stuff like Yoga and Tai Chi can be a double edged sword so you’ve gotta be really aware of your own tendencies to hyperextend and damage your body.
Check the list of comorbid conditions. EDS is a syndrome, it is a collection of symptoms and disorders, and ergo there is a lot of overlapping disorders. Gastrointestinal disorders, chiari malformation, mast cell activation, mitral valve prolapse, rheumatoid arthritis, etc, be aware of the symptoms just in case you do develop them.
Also you can have surgical intervention if you have problem joints, if you have quite consistent problem joints it’s not a bad idea to get them checked out specifically. I had really unstable knees, turns out my bones were a little underbaked, had hella Patella Alta, two surgeries and I don’t get total dislocations anymore in those joints, just occasional sublaxing.
omg thank you so much this is really helpful. Ill think about all of this! its really good to know. yeah I'm in my late teens so def hitting that pain stage ^^"
I'm already having to say "no" to things that I'd really love to do because I cant walk. My ankles are completely useless, I'm going to physical therapy but progress is slow and life goes fast. Its really nice to see other people with my condition because I feel really horribly alone all the time. Not to mention being harassed and blatantly bullied for using a cane/braces. Sorry for dumping my sob story on you, and thank you again.
I will say as someone who used to use aids more consistently, found European style crutches to be wayyyy better than canes, especially if you get bad wrist pain. Upgrading your aids is legit a good idea, look into different grip types as well.
okie dokies! I'll look into it. as of right now I AM a minor and my mom rolls her eyes whenever I mention pain/mobility aids whatever because she "hunted down the doctor to give you diagnosis isn't that enough?" so perhaps I'll wait until I've moved out and wont receive shite for that kind of stuff anymore. thank you again!
Caedmon
First of all, best resource I can give you is The EDS Society, they’re UK based but they’re pretty consistently doing webinars and online support groups, they’re pretty damn instrumental in EDS advocacy.
Given that you say you’re a minor you’re probably gonna be in the ages transitioning between stages, and it’s gonna be rough ngl.
hEDS has three major stages Hypermobility (Early Life), Pain (late teens to 40s) and Stiffness (40+) and the Hypermobility-Pain stage transition is gonna kick your ass, it’s okay. You’re gonna have to accept that it’s gonna set you back a bit, whether that be socially or physically or academically. I had to take four years off for it, but I did just get accepted by university and my shit’s on track now. You might fall behind your peers, but your peers will probably get a little fucked over by life too. There’s no one path for life.
Exercise is very good, just keep at it, a little exercise consistently is better than a lot of exercise intermittently. You’re trying to avoid deconditioning, not really getting gains. Weights isn’t as recommended, I got personally told not to do weights but I’m a little bit of an extremer case, if you can do low impact sports such as swimming that’s way more supportive.
Also training your proprioception and body map is very good to avoid hyperextention and injury. Stuff like Yoga and Tai Chi can be a double edged sword so you’ve gotta be really aware of your own tendencies to hyperextend and damage your body.
Check the list of comorbid conditions. EDS is a syndrome, it is a collection of symptoms and disorders, and ergo there is a lot of overlapping disorders. Gastrointestinal disorders, chiari malformation, mast cell activation, mitral valve prolapse, rheumatoid arthritis, etc, be aware of the symptoms just in case you do develop them.
Also you can have surgical intervention if you have problem joints, if you have quite consistent problem joints it’s not a bad idea to get them checked out specifically. I had really unstable knees, turns out my bones were a little underbaked, had hella Patella Alta, two surgeries and I don’t get total dislocations anymore in those joints, just occasional sublaxing.
2 months, 3 days ago
omg thank you so much this is really helpful. Ill think about all of this! its really good to know. yeah I'm in my late teens so def hitting that pain stage ^^" I'm already having to say "no" to things that I'd really love to do because I cant walk. My ankles are completely useless, I'm going to physical therapy but progress is slow and life goes fast. Its really nice to see other people with my condition because I feel really horribly alone all the time. Not to mention being harassed and blatantly bullied for using a cane/braces. Sorry for dumping my sob story on you, and thank you again.
2 months, 3 days ago
It’s fine
I will say as someone who used to use aids more consistently, found European style crutches to be wayyyy better than canes, especially if you get bad wrist pain. Upgrading your aids is legit a good idea, look into different grip types as well.
Oh also compression socks are a lifesaver.
2 months, 3 days ago
okie dokies! I'll look into it. as of right now I AM a minor and my mom rolls her eyes whenever I mention pain/mobility aids whatever because she "hunted down the doctor to give you diagnosis isn't that enough?" so perhaps I'll wait until I've moved out and wont receive shite for that kind of stuff anymore. thank you again!
and have a great day! <3
2 months, 3 days ago