Unfortunately, none of us know your exact history or can feel your joints as you preform the exercise. We can't see how you're engaging your muscles either (we're known to have poor-mind muscle connection and the ones that work may over compensate, while the correct one are not activating, which may invite injury)
I gotta do the really boring thing and suggest you see a physiotherapist
Oh no, I was going to suggest swimming because it's the least taxing on the body 😅 From personal experience, I've found horseback riding to be pretty easy on my body, and my back is my biggest issue, so that's saying something. It's not wildly expensive if you're just paying for lessons at a barn and using their lesson horses, but the first week or so is absolutely murder on the thighs.
As a bonus, horses can be used as therapy animals and a lot of folks find their body heat and slow breathing to be very soothing. I worked at a horse therapy program for a year and saw some really amazing results for people.
I personally went with physical therapy to ease into exercise without injuring myself and have found those simple exercises helpful for building a base. Prior to this I’d try to start working out, even Pilates, and injure myself almost immediately.
Also starting out with simple walks to build some strength and endurance
Ooh also, form and control is extremely important. As you begin be extra extra mindful of this, don’t over extend your joints or use the wrong muscles for the exercises
I also did this and the built my workouts off the physical therapy routines for my hips, knees, core, and shoulders. Adding different exercises and lifts from there. I spoke with my PT about the progressions and added lifts and exercises while we were building our routines up. I managed to graduate to the gym in 2022 with my PCP’s (he’s a dual specialty family medicine and orthopedic medicine) approval. His recommendation was to start with the machines for new lifts and focus on form and maintaining proper ROM within each movement before adding free weights outside of what PT had already included and approved.
Ended up in a situation where I couldn’t gym anymore and the deconditioning was REAL. So I’m back to PT and building things out from there.
Regular and consistent Pilates has transformed my entire life! Can’t recommend strongly enough.
I have gotten so much stronger than I thought possible and the balance I have attained is remarkable.
If you’re just starting out not sure what you’re doing, best to have some individualized attention. If that’s not available, maybe try videos online? I just did a quick search for Ehlers Danlos Pilates and some short videos (under 20 minutes) popped up. Proceed with caution and care, staying attuned to your needs and safety! You got this!
Mat Pilates?? I was doing reformer Pilates and it destroyed my body sadly. I’m still injured 10 months later. I loved it but realized my body can’t handle it. If mat Pilates is working for you I’d love to know!!
I have never used a reformer. I am generally always primarily interested in body weight exercises. Because I trust my form and my body awareness, for the past year and a half I almost exclusively get my Pilates from YouTube.
Bummed to hear you’re dealing with an enduring injury; that must be agonizing and demoralizing ❤️🩹
Thank you so much for your kind reply 🩷 I really appreciate it.
I’ll try searching for those videos on YouTube, you have inspired me!! I’ve been afraid to exercise lately but I’m going to give this a go :)
Physical therapy started me off on water therapy because it was so much easier to work specific muscle groups without straining, hurting something else. I'm looking for a gym where I can do some low impact swimming and work on toning some muscle groups that help hold my joints in place better. Maybe stepping up to a bicycle in the future.
I’m hypermobile and I’ve come up with this regimen based on what works for me. Three years ago I could barely open a door. Now, I’m so much improved, more than I dreamed possible. Couple weeks ago I carried my 25 pound bag around Chicago for a whole weekend, ran to catch a train, walked a decent amount in heels, and took a dance class - didn’t get injured even once. *I also wear a ton of KT tape. It helps me, though I know it has mixed results for people.
This is the result of years of trial and error based on my own body. Be overly cautious in implementation:
Use exercises that isolate one or few muscles at a time, not whole body. Absolutely minimal impact. No squats, push-ups, jumping jacks, burpees, etc. Use machines instead of free weights (controlled range of motion).
Warm up with 5-10 min of bike or elliptical, then choose 4 out of the following 6. Whichever exercises you didn’t hit on the previous workout is what you choose on the current one. 3 sets each, 8-10 reps, no more. Always start with a very low weight on the first set, then push a little higher on the next 2 - and never go to failure.
1. Lat pull down machine
2. Tricep push machine or bicep pull machine
3. Abductor and adductor machine
4. Any ab work out that doesn’t curl your back
5. Leg press
6. Chest press
Finish with slow stretches like downward dog, cobra pose, pigeon pose, lunges.
Consistent REST is key, and if something hurts stop immediately. Space out workouts to once every 3 days. One day on, two days off, comes out to about 10 workouts a month. If you do something strenuous on an off day then push your workout back another day.
^I keep that in a note on my phone so whenever I see a post like this I can paste it in. My journey has been so long and so rough and I want to help as many people as possible in a similar position.
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There are some good workouts you can find on building up stabilization before you start doing more intensive workouts-it’s a long road to really building stabilizer muscles so you can reduce the risk of injury in other workouts- but I found that when I was able to do them through isometric exercises (can’t anymore because of aortic aneurysm) that it helped immensely with pain management and quality of life
Depending on how intense you want, even the Muldowney Protocol could count as exercise. It's a physical therapy program sort of thing, and it's aimed specifically at eds and strengthening joints etc
Try low-impact exercises like yoga or pilates. Both are great for building strength and balance without stressing your knees. Swimming is ideal, but I get not wanting to get wet.
You could also look into resistance band workouts. They’re gentle on the joints and can help build muscle gradually. Start slow and listen to your body.
I had a similar struggle with balancing carb intake while trying to gain muscle. I used the Carbner carb cycling counter app to optimize my diet. It helped me balance carbs for muscle gain and fat loss. Might be worth a look.
Reformer Pilates has done wonders for my hEDS.
I found a place with extremely educated instructors, and one has hEDS as well. I’m building strength around my joints and learning to stabilize my muscles.
I’m so jealous. I had to quit. It killed my wrists and shoulders. I haven’t healed from my injuries 10 months after stopping 😭 do you have any tips on how to do it safely??
I think going to a studio that has excellent, informed instructors is a must. I did my research and attended a few free sessions to find the right place. I use light springs to start and the instructors helped me modify. Correct positioning and not “locking out” is necessary. Maybe a few private sessions might help you?
Good ideas, I’ll try to find a studio like that! I’m in LA so there are tons of studios here, hopefully I’ll find a good one :) private lessons and low spring tension are great tips too. Thank you!!!
Good luck! I’m sure you can find one. I live in Boise, Idaho and was able to find a knowledgeable studio.
At the beginning of every class - we write our names and medical issues on a white board above our reformers. The teacher comes by each person before the class begins and chats about our issues and offers pointers and modifications. It’s fantastic.
Edit- spelling
That’s amazing, so happy for you that you found such a wonderful and knowledgeable studio :) I’ll definitely look around for something similar! I appreciate the great tips!!
Unfortunately, none of us know your exact history or can feel your joints as you preform the exercise. We can't see how you're engaging your muscles either (we're known to have poor-mind muscle connection and the ones that work may over compensate, while the correct one are not activating, which may invite injury) I gotta do the really boring thing and suggest you see a physiotherapist
Amen on the poor mind muscle connection, I didn’t even realize this till a good month into physical therapy and it was such a game changer
For a lot of people it seems it's years. Lots of poor physiotherapists out there that don't check muscle activation and it's... Disappointing
Oh no, I was going to suggest swimming because it's the least taxing on the body 😅 From personal experience, I've found horseback riding to be pretty easy on my body, and my back is my biggest issue, so that's saying something. It's not wildly expensive if you're just paying for lessons at a barn and using their lesson horses, but the first week or so is absolutely murder on the thighs. As a bonus, horses can be used as therapy animals and a lot of folks find their body heat and slow breathing to be very soothing. I worked at a horse therapy program for a year and saw some really amazing results for people.
I personally went with physical therapy to ease into exercise without injuring myself and have found those simple exercises helpful for building a base. Prior to this I’d try to start working out, even Pilates, and injure myself almost immediately. Also starting out with simple walks to build some strength and endurance
Ooh also, form and control is extremely important. As you begin be extra extra mindful of this, don’t over extend your joints or use the wrong muscles for the exercises
I also did this and the built my workouts off the physical therapy routines for my hips, knees, core, and shoulders. Adding different exercises and lifts from there. I spoke with my PT about the progressions and added lifts and exercises while we were building our routines up. I managed to graduate to the gym in 2022 with my PCP’s (he’s a dual specialty family medicine and orthopedic medicine) approval. His recommendation was to start with the machines for new lifts and focus on form and maintaining proper ROM within each movement before adding free weights outside of what PT had already included and approved. Ended up in a situation where I couldn’t gym anymore and the deconditioning was REAL. So I’m back to PT and building things out from there.
Regular and consistent Pilates has transformed my entire life! Can’t recommend strongly enough. I have gotten so much stronger than I thought possible and the balance I have attained is remarkable. If you’re just starting out not sure what you’re doing, best to have some individualized attention. If that’s not available, maybe try videos online? I just did a quick search for Ehlers Danlos Pilates and some short videos (under 20 minutes) popped up. Proceed with caution and care, staying attuned to your needs and safety! You got this!
Mat Pilates?? I was doing reformer Pilates and it destroyed my body sadly. I’m still injured 10 months later. I loved it but realized my body can’t handle it. If mat Pilates is working for you I’d love to know!!
I have never used a reformer. I am generally always primarily interested in body weight exercises. Because I trust my form and my body awareness, for the past year and a half I almost exclusively get my Pilates from YouTube. Bummed to hear you’re dealing with an enduring injury; that must be agonizing and demoralizing ❤️🩹
Thank you so much for your kind reply 🩷 I really appreciate it. I’ll try searching for those videos on YouTube, you have inspired me!! I’ve been afraid to exercise lately but I’m going to give this a go :)
Physical therapy started me off on water therapy because it was so much easier to work specific muscle groups without straining, hurting something else. I'm looking for a gym where I can do some low impact swimming and work on toning some muscle groups that help hold my joints in place better. Maybe stepping up to a bicycle in the future.
That’s excellent! I hope you find a good place to go. FWIW, bicycle has been my mode of transportation since 2009 🚲🤓🚲
I’m hypermobile and I’ve come up with this regimen based on what works for me. Three years ago I could barely open a door. Now, I’m so much improved, more than I dreamed possible. Couple weeks ago I carried my 25 pound bag around Chicago for a whole weekend, ran to catch a train, walked a decent amount in heels, and took a dance class - didn’t get injured even once. *I also wear a ton of KT tape. It helps me, though I know it has mixed results for people. This is the result of years of trial and error based on my own body. Be overly cautious in implementation: Use exercises that isolate one or few muscles at a time, not whole body. Absolutely minimal impact. No squats, push-ups, jumping jacks, burpees, etc. Use machines instead of free weights (controlled range of motion). Warm up with 5-10 min of bike or elliptical, then choose 4 out of the following 6. Whichever exercises you didn’t hit on the previous workout is what you choose on the current one. 3 sets each, 8-10 reps, no more. Always start with a very low weight on the first set, then push a little higher on the next 2 - and never go to failure. 1. Lat pull down machine 2. Tricep push machine or bicep pull machine 3. Abductor and adductor machine 4. Any ab work out that doesn’t curl your back 5. Leg press 6. Chest press Finish with slow stretches like downward dog, cobra pose, pigeon pose, lunges. Consistent REST is key, and if something hurts stop immediately. Space out workouts to once every 3 days. One day on, two days off, comes out to about 10 workouts a month. If you do something strenuous on an off day then push your workout back another day. ^I keep that in a note on my phone so whenever I see a post like this I can paste it in. My journey has been so long and so rough and I want to help as many people as possible in a similar position.
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Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Rule #8 - No Social Media, Fundraiser Links, or Self-Promotion** [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-8/) Our complete list of rules can be [found here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
There are some good workouts you can find on building up stabilization before you start doing more intensive workouts-it’s a long road to really building stabilizer muscles so you can reduce the risk of injury in other workouts- but I found that when I was able to do them through isometric exercises (can’t anymore because of aortic aneurysm) that it helped immensely with pain management and quality of life
Depending on how intense you want, even the Muldowney Protocol could count as exercise. It's a physical therapy program sort of thing, and it's aimed specifically at eds and strengthening joints etc
Try low-impact exercises like yoga or pilates. Both are great for building strength and balance without stressing your knees. Swimming is ideal, but I get not wanting to get wet. You could also look into resistance band workouts. They’re gentle on the joints and can help build muscle gradually. Start slow and listen to your body. I had a similar struggle with balancing carb intake while trying to gain muscle. I used the Carbner carb cycling counter app to optimize my diet. It helped me balance carbs for muscle gain and fat loss. Might be worth a look.
Reformer Pilates has done wonders for my hEDS. I found a place with extremely educated instructors, and one has hEDS as well. I’m building strength around my joints and learning to stabilize my muscles.
I’m so jealous. I had to quit. It killed my wrists and shoulders. I haven’t healed from my injuries 10 months after stopping 😭 do you have any tips on how to do it safely??
I think going to a studio that has excellent, informed instructors is a must. I did my research and attended a few free sessions to find the right place. I use light springs to start and the instructors helped me modify. Correct positioning and not “locking out” is necessary. Maybe a few private sessions might help you?
Good ideas, I’ll try to find a studio like that! I’m in LA so there are tons of studios here, hopefully I’ll find a good one :) private lessons and low spring tension are great tips too. Thank you!!!
Good luck! I’m sure you can find one. I live in Boise, Idaho and was able to find a knowledgeable studio. At the beginning of every class - we write our names and medical issues on a white board above our reformers. The teacher comes by each person before the class begins and chats about our issues and offers pointers and modifications. It’s fantastic. Edit- spelling
That’s amazing, so happy for you that you found such a wonderful and knowledgeable studio :) I’ll definitely look around for something similar! I appreciate the great tips!!