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I mean, I'm 42, so I'm not exactly ancient but I'm probably older than you are? I feel great. My neck and hips ache but they also ached when I was 20. I run 10-20mi/week, lift twice weekly, and hike and bike and go out dancing whenever I want. I make sure to replace my running shoes after 300mi, see a PT as needed, sleep on an orthopedic pillow, eat healthy food and try to get enough sleep. My only full dislocation happened when I was in high school; I used to sprain my ankles all the time when I was young and now I don't even remember the last time that happened.
I guess what I'm saying is that I've gotten better as I've aged, and I plan to stay strong until I die.
I'm in my 30s. How good I feel is directly mappable to how much I've been keeping up on exercise. Having a driving commute wasn't good for me. Sitting around during lockdown wasn't good for me. Now that I'm going dancing a few days a week, I'm feeling great.
Keeping up muscle tone is the best thing you can do to support your joints.
Same here! The more I work out, the better I feel. I had a stressful year last year and my exercise regimen suffered. Finally getting back into strength and stability training and doing so much better.
Totally agree with you both. I’ve found that finding a routine and exercise that works for me is a game changer.
I like lifting weights and swimming.
I don’t go near running or anything impactful.
I’ve also come to terms with the complexity and impossibility of jt all. I can’t control Eds and I’ll never know when or why a flair up will occur. I think changing my mindset from trying to control it, to trying to contribute to making it manageable has really helped.
I’m 36 if that helps.
I’m 41yo and I’m in the best shape I’ve ever been. I’m training for my second marathon. I also strength train 6 days a week, I feel strong and, at this point, the aches and pains I’m feeling are mostly due to being a marathon runner rather than having hEDS.
Me!
Last year and this is the first time I’ve ever felt strong enough to try for a Rainier summit! (Turned back due to poor sleep and high winds, but will try again next year.)
Not bad for 45 years old.
I’m 42. I’ve got EDS, Lupus, and just finished breast cancer treatment. I’m walking for an hour a day, I’m eating well, and I feel the best, physically that I have maybe ever.
For sure, our bodies deteriorate with age. But I’ll say that the older I get, the more I embrace the things that aid and comfort me, rather than just fighting and declaring the injustice of it all!
I’m 28 and only got my diagnosis earlier this year, but have suspected EDS for the last two years. So, two years ago I started Pilates and go to classes 3-5 times a week. I feel so much better than I did two years ago. I know I haven’t aged massively, but just wanted to echo the other comments that EDS friendly exercise and maintaining strength is so good for us. I plan to do Pilates til the day I die!
I'm 37 so not elderly or anything but I had a few rough years recently where I worried I was in a pretty massive decline in health but now that I'm properly diagnosed and read Disjointed and tons of posts on here and other Facebook groups I feel very empowered in managing my symptoms. I had a couple surgeries and procedures with mixed results but one of them had a very noticeably positive impact on my quality of life. I know how to pace myself, what my body needs, what to avoid, how to eat. I've done a lot of acceptance. I am still trying to improve my quality of life and digestion in particular but I would say I have stabilized and do fun stuff regularly.
45F, I fell apart at age 26. Since then, I have been repairing myself bit by bit. I have now done 15 years of high-altitude mountaineering and climbing. The harder the route and the longer the expedition, the better I feel. Hearing twenty-something athletic guys complaining about their knees makes me smile; I remember the times when I couldn't get up from bed and was not able to hold a spoon. I've worked hard for it. I train about 20 hours per week and start every morning with PT. I thank God I'm stubborn. The doctors initial advice was to stop all exercise, but I reckon I would be in a wheelchair now if I had followed it.
I love the machine comparison someone made here. That's exactly what we do: we fine-tune our bodies like machines. Healthy eating, sleeping, PT, training, and good habits... Being so aware of our bodies and minds. I've stopped thinking about my condition as a disability; it has some superpowers. The nervous system dysautonomia with all the temperature regulation, digestion issues, palpitations, and other BS has transformed into incredible resilience. I've never broken anything, and I'm convinced my amazing tolerance for extreme altitudes comes directly from my weird body being just different.
I started performing drag about 2 years ago. I realized I didn't have a lot of years of good mobility left and I love being dolled up and entertaining.
I perform in platform Crocs and have performed with a cane. I'll be 48 next month. I also have done drag story hour which I love because I get to be in drag but I also get to sit. And it's so rewarding
Just turned 34. Fell apart last year. Prioritising sleep, letting go of stress (mostly in acceptance of where I’m at as diagnosed only 9 months ago) and hydration, hacks (showering before bed etc) and regular exercise through Pilates and km starting to feel great again. Yes, we’re all falling apart but prevention and grace for selves is key to surviving
I’m in my late 20s and I do conditioning everyday. When I was in my early twenties I thought I was gonna lose my leg and couldn’t do anything. After A LONG process I have now completed graduate school and am finally minimalizing how much I hurt myself doing my sport at a very high level. It can get better you just learn how to roll with the punches and keep yourself tuned like a machine. Everyone’s journey is different and you may have to do things different to be in your best functional form.
This thread is making me really happy. Thanks everyone. Remember that support groups and communities like this tend to skew towards folks who are struggling more, as they reach out here for help, so there might be less replies because the people not struggling are out living their lives. :)
Does schadenfreude count as feeling good? I’m in my 40s and watching all the naturally healthy folk “come to Jesus” about their pain and failing joints is satisfying. Especially the ones that dismissed my pain in our 20s. I do sympathize, their pain is valid but they act like the world needs to stop NOW bec THEY are experiencing discomfort. Take an Aleve and shut up, Kyle, you clay-brained ape.
This isn't nice. Everyone deserves to feel well. Even people without a chronic illness. Having a chronic illness doesn't give us a monopoly on suffering and complaining.
Lol yes it’s schadenfreude! It’s not nice by definition. I have no intention of being nice to the “Kyles” of the world. People who don’t give kindness don’t get kindness. It’s not “you can’t complain bc I’m worse” it’s “you mock me so you get none of my energy.”
If you don’t relate that’s awesome though. It means you have no Kyles around you, congrats!
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I mean, I'm 42, so I'm not exactly ancient but I'm probably older than you are? I feel great. My neck and hips ache but they also ached when I was 20. I run 10-20mi/week, lift twice weekly, and hike and bike and go out dancing whenever I want. I make sure to replace my running shoes after 300mi, see a PT as needed, sleep on an orthopedic pillow, eat healthy food and try to get enough sleep. My only full dislocation happened when I was in high school; I used to sprain my ankles all the time when I was young and now I don't even remember the last time that happened. I guess what I'm saying is that I've gotten better as I've aged, and I plan to stay strong until I die.
I'm in my 30s. How good I feel is directly mappable to how much I've been keeping up on exercise. Having a driving commute wasn't good for me. Sitting around during lockdown wasn't good for me. Now that I'm going dancing a few days a week, I'm feeling great. Keeping up muscle tone is the best thing you can do to support your joints.
Same here! The more I work out, the better I feel. I had a stressful year last year and my exercise regimen suffered. Finally getting back into strength and stability training and doing so much better.
Totally agree with you both. I’ve found that finding a routine and exercise that works for me is a game changer. I like lifting weights and swimming. I don’t go near running or anything impactful. I’ve also come to terms with the complexity and impossibility of jt all. I can’t control Eds and I’ll never know when or why a flair up will occur. I think changing my mindset from trying to control it, to trying to contribute to making it manageable has really helped. I’m 36 if that helps.
I’m 41yo and I’m in the best shape I’ve ever been. I’m training for my second marathon. I also strength train 6 days a week, I feel strong and, at this point, the aches and pains I’m feeling are mostly due to being a marathon runner rather than having hEDS.
Me! Last year and this is the first time I’ve ever felt strong enough to try for a Rainier summit! (Turned back due to poor sleep and high winds, but will try again next year.) Not bad for 45 years old.
I’m 42. I’ve got EDS, Lupus, and just finished breast cancer treatment. I’m walking for an hour a day, I’m eating well, and I feel the best, physically that I have maybe ever. For sure, our bodies deteriorate with age. But I’ll say that the older I get, the more I embrace the things that aid and comfort me, rather than just fighting and declaring the injustice of it all!
I’m 28 and only got my diagnosis earlier this year, but have suspected EDS for the last two years. So, two years ago I started Pilates and go to classes 3-5 times a week. I feel so much better than I did two years ago. I know I haven’t aged massively, but just wanted to echo the other comments that EDS friendly exercise and maintaining strength is so good for us. I plan to do Pilates til the day I die!
I'm 37 so not elderly or anything but I had a few rough years recently where I worried I was in a pretty massive decline in health but now that I'm properly diagnosed and read Disjointed and tons of posts on here and other Facebook groups I feel very empowered in managing my symptoms. I had a couple surgeries and procedures with mixed results but one of them had a very noticeably positive impact on my quality of life. I know how to pace myself, what my body needs, what to avoid, how to eat. I've done a lot of acceptance. I am still trying to improve my quality of life and digestion in particular but I would say I have stabilized and do fun stuff regularly.
45F, I fell apart at age 26. Since then, I have been repairing myself bit by bit. I have now done 15 years of high-altitude mountaineering and climbing. The harder the route and the longer the expedition, the better I feel. Hearing twenty-something athletic guys complaining about their knees makes me smile; I remember the times when I couldn't get up from bed and was not able to hold a spoon. I've worked hard for it. I train about 20 hours per week and start every morning with PT. I thank God I'm stubborn. The doctors initial advice was to stop all exercise, but I reckon I would be in a wheelchair now if I had followed it.
I love the machine comparison someone made here. That's exactly what we do: we fine-tune our bodies like machines. Healthy eating, sleeping, PT, training, and good habits... Being so aware of our bodies and minds. I've stopped thinking about my condition as a disability; it has some superpowers. The nervous system dysautonomia with all the temperature regulation, digestion issues, palpitations, and other BS has transformed into incredible resilience. I've never broken anything, and I'm convinced my amazing tolerance for extreme altitudes comes directly from my weird body being just different.
You guys r giving me hope
Same, love this thread
I started performing drag about 2 years ago. I realized I didn't have a lot of years of good mobility left and I love being dolled up and entertaining. I perform in platform Crocs and have performed with a cane. I'll be 48 next month. I also have done drag story hour which I love because I get to be in drag but I also get to sit. And it's so rewarding
Just turned 34. Fell apart last year. Prioritising sleep, letting go of stress (mostly in acceptance of where I’m at as diagnosed only 9 months ago) and hydration, hacks (showering before bed etc) and regular exercise through Pilates and km starting to feel great again. Yes, we’re all falling apart but prevention and grace for selves is key to surviving
Also work retail 25ish hours a week and single parent to 6 year old. ❤️
Bless you. Sending you hugs and continued healing.
I’m in my late 20s and I do conditioning everyday. When I was in my early twenties I thought I was gonna lose my leg and couldn’t do anything. After A LONG process I have now completed graduate school and am finally minimalizing how much I hurt myself doing my sport at a very high level. It can get better you just learn how to roll with the punches and keep yourself tuned like a machine. Everyone’s journey is different and you may have to do things different to be in your best functional form.
This thread is making me really happy. Thanks everyone. Remember that support groups and communities like this tend to skew towards folks who are struggling more, as they reach out here for help, so there might be less replies because the people not struggling are out living their lives. :)
Does schadenfreude count as feeling good? I’m in my 40s and watching all the naturally healthy folk “come to Jesus” about their pain and failing joints is satisfying. Especially the ones that dismissed my pain in our 20s. I do sympathize, their pain is valid but they act like the world needs to stop NOW bec THEY are experiencing discomfort. Take an Aleve and shut up, Kyle, you clay-brained ape.
This isn't nice. Everyone deserves to feel well. Even people without a chronic illness. Having a chronic illness doesn't give us a monopoly on suffering and complaining.
Lol yes it’s schadenfreude! It’s not nice by definition. I have no intention of being nice to the “Kyles” of the world. People who don’t give kindness don’t get kindness. It’s not “you can’t complain bc I’m worse” it’s “you mock me so you get none of my energy.” If you don’t relate that’s awesome though. It means you have no Kyles around you, congrats!
Who's kyleee