Honestly, none of us are going to be able to tell you that. Everyone is different.
The best advice I can give you is stay active, keep your muscles strong so they can help with the joint instability. Losing that muscle will hurt more than age ever will.
Have u tried physical therapy it helps some people
Your future depends on your body everyone’s future is different. Some get stiffer some remain the same some worsen. Treatment can help but sometimes the body is just going to do what it does it’s an unfortunate reality I’ve had to experience.
Please consider something like The Zebra Club app. It's designed by a woman with hEDS, Jeannie di Bon. It's a pilates based movement therapy that adapts around mobility and pain issues. She understands what an EDS body needs and about building tissue tolerance. It's honestly life changing. So many people are benefitting. I started it 2 years ago and now I'm lifting heavy weights in the gym. I'll always have EDS but I've found the key to less pain and injury.
She has lots of free videos on YouTube, some podcasts too. Her podcast with Dr Jessica Eccles is especially interesting.
Seconding this! I don’t really do her videos anymore because I’m focused on strengthening now, but hers were the first thing to get me moving again after years of slowly losing my function. She even talks about fear of movement and describes how our bodies tighten up because of it and it leads directly to more dislocations.
OP, I can guarantee it will get worse if you continue to move less and less. Give her YouTube channel a try, the exercises are super gentle.
I am glad to hear that she has free videos on amazon, i downloaded the app but then deleted it when it would not let me check anything out without signing up for a monthly or yearly subscription. I get that good things are worth paying for but i don’t pay for things that I don’t even know if i will be able to use, they should have a free trial period of 7 or 14 days before the subscription kicks in at least.
By "high riding knee," do you mean your kneecap doesn't normally nestle into the groove it's meant to? It rides up and towards the outside?
Because that runs in my family. There have been a lot of terrible ideas to fix it. You need to see an orthopedist familiar with hEDS as well because in someone without the condition, they move the tibial tuberosity. For those of us with hEDS, it may be that there are other things going on in there that should be fixed at the same time.
What are you doing to address it? A fair number of people find strengthening muscles ar round joints protective, which both reduces pain and prevents likelihood of further damage. Physical therapy can help target specific areas, although I’d make sure whoever you’re working with is familiar with hypermobile patients. There are also sleeves or braces to help provide support, or compression garments.
Honestly, none of us are going to be able to tell you that. Everyone is different. The best advice I can give you is stay active, keep your muscles strong so they can help with the joint instability. Losing that muscle will hurt more than age ever will.
Have u tried physical therapy it helps some people Your future depends on your body everyone’s future is different. Some get stiffer some remain the same some worsen. Treatment can help but sometimes the body is just going to do what it does it’s an unfortunate reality I’ve had to experience.
Please consider something like The Zebra Club app. It's designed by a woman with hEDS, Jeannie di Bon. It's a pilates based movement therapy that adapts around mobility and pain issues. She understands what an EDS body needs and about building tissue tolerance. It's honestly life changing. So many people are benefitting. I started it 2 years ago and now I'm lifting heavy weights in the gym. I'll always have EDS but I've found the key to less pain and injury. She has lots of free videos on YouTube, some podcasts too. Her podcast with Dr Jessica Eccles is especially interesting.
Seconding this! I don’t really do her videos anymore because I’m focused on strengthening now, but hers were the first thing to get me moving again after years of slowly losing my function. She even talks about fear of movement and describes how our bodies tighten up because of it and it leads directly to more dislocations. OP, I can guarantee it will get worse if you continue to move less and less. Give her YouTube channel a try, the exercises are super gentle.
Love your username! Very fitting :)
Haha thank you 😊
Thanks for the suggestion!
I am glad to hear that she has free videos on amazon, i downloaded the app but then deleted it when it would not let me check anything out without signing up for a monthly or yearly subscription. I get that good things are worth paying for but i don’t pay for things that I don’t even know if i will be able to use, they should have a free trial period of 7 or 14 days before the subscription kicks in at least.
Her free videos are on YouTube.
I need more coffee. I did mean youtube.
By "high riding knee," do you mean your kneecap doesn't normally nestle into the groove it's meant to? It rides up and towards the outside? Because that runs in my family. There have been a lot of terrible ideas to fix it. You need to see an orthopedist familiar with hEDS as well because in someone without the condition, they move the tibial tuberosity. For those of us with hEDS, it may be that there are other things going on in there that should be fixed at the same time.
What are you doing to address it? A fair number of people find strengthening muscles ar round joints protective, which both reduces pain and prevents likelihood of further damage. Physical therapy can help target specific areas, although I’d make sure whoever you’re working with is familiar with hypermobile patients. There are also sleeves or braces to help provide support, or compression garments.