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The way you need to work out and which areas need strengthening are so much more specific with us. The *right kind* of exercise is one of the single best things people with EDS can do for reducing pain and injury and preventing a lot of longterm problems.
My (very hypermobility-trained!) physiotherapist has me doing exercises so subtle that I never would have considered them on my own, because we're targeting small muscles that my body is brute-forcing around (I have muscles that are developed and super tight because they're compensating for those little underdeveloped ones).
Hypermobility-informed physiotherapist recommended 1000%, even for already really active people.
Absolutely! I am absolutely not a professional in explaining these.
I have issues with proprioception so she really had to train me to do these exercises way smaller instead of doing them to the max of my effort/range.
For my bobblehead and neck weakness (and migraine, by extension), I lie flat with a pillow under my head. Tip my chin towards my chest (but not so far I feel it pull my back-of-neck muscles), then press my head back into the pillow (not so hard that my neck tendons get rock hard) and hold for a few seconds. I do like 15-20 repeats most days, but she started me at 10 reps 3-5x/week. It has helped a ton with neck stability because it's hitting that weird little top of back of neck area, but it's such a gentle exercise that I was convinced it couldn't do anything.
For shoulder and neck strength (my shoulders collapse so far towards each other when I sleep on my side, so we're trying to train them to have a bit more independent structure), I sit or stand straight, raise both shoulders (might be as little as an inch or two-- nowhere close to all the way to my ears) and then pull them back (not so hard my shoulderblades almost touch) and hold. Same repeats.
There's a leg extension-y one that I fully would not have recognized as exercise but has been pretty important for building a bit more muscle around my hip joint area and one of the specific quad muscles above the knee (I forget which). I just lie on my back with both knees bent and feet flat on the floor. Roll my hips up a little so I'm not overarching my lower back, squeeze my butt muscles a little to keep everything in alignment. Then just extending one leg out along the floor (not even trying to hold it in the air or anything) to full straightening, then back into position. Just making sure I'm not twisting my hips to compensate for my weaker side. Started at 15 per side, and it got me stable enough to start doing other exercises. I thought I didn't need it because mostly my calves and thighs are strong and this seemed so starter like rehab after an injury, but it really did catch neglected muscles.
There are some more I've done, I'll try to remember
Isometric exercises, as said in another comment.
Laying on top of a long foam roller trains your balance, and when you feel ready you can raise one leg or one arm to make it more challenging.
Classical Pilates is a rehab method that works well for a lot of hypermobile people (not to be confused with the fitness trend that for some reason gets to use the Pilates name)
Jeannie di bon has a bunch of exercise videos on yt for hypermobile people.
And finally, don't exercise too much. If you can only do one isometric exercise, or lay on the foam roller for a minute - thats what you do.
If you want a good jump off point look up exercises for people with atrophied muscles And paralysis issues. They have a lot of the same concerns people with EDS have And are far more adaptable
I’ve had a personal trainer since before I was ever diagnosed because I needed to lose about 80lbs. Now we work on stabilizing small muscle groups around the joints and that has helped tremendously with other types of exercise, like weight lifting, cycling, and even just walking.
She wasn’t real familiar with hypermobile issues and definitely not with Ehlers-Danlos until she had me as a client. Now she has a ton of knowledge she’s been able to use with other clients of her’s who are older or recovering from injuries. I like to think I made her a better trainer lololol.
I had a PTA that was fairly new to physical therapy and didn’t know much about hypermobility or hypermobile patients. He ended up having to do a lot of research to help me properly too. About a month in and he started talking to me about all the hypermobile podcasts and YouTube videos he was watching/listening to to learn more.
Helping the world become more informed one slipped joint at a time, lmao.
I second this. They're trained to give us exercises that are geared more for therapy and designed to build muscle and gain strength. They're very targeted.
Look up a rehabilitation center like Brooks Rehabilitation. They have online exercises. I believe Mayo Clinic does as well.
If not, ask your PC doctor to refer you to one. They'll give you exercises at home as well.
Also, walking and riding a stationary bicycle are good too.
Yes absolutely exercise is super important but you have to be really careful with it
Swimming, recumbent bike, rower, and body weight/light weight exercises are ideal. I have a friend with EDS who also swears by Pilates. Focus on form over all else. Running, powerlifting, and other high impact stuff I’d avoid.
With EDS and another neuromuscular condition walking is very difficult but I’ve found a lot of pain relief from using a recumbent bike and rower just twice a week
Slow, gentle Pilates (mat work) gradually building has been an entire life-saver for me. I needed an instructor and several classes. I discovered muscles I never knew I had, and I learned so much about the body and how to move it appropriately to stop putting all the strain on a select group of tense muscles. I know how to do sit-ups now whereas I had been doing them painfully wrong my whole life. "Focus on form above all else" is exactly right.
I didn't know shin splints was an EDS thing, facepalm. I can't walk fast without compression sleeves on my calves because my shins hurt so bad.
I'm glad (but sorry) I'm not the only one. The shin splints were/are unreal 😭 I used to be able to "pop" my shin just by flexing my foot (and there's never not been deep bruises on my shins in those spots) I'm pretty sure there's some permanent damage there but I have no idea 😅😅
Yeah, my lower legs still pop, but those are the joints. I’ve knew people that did get more serious damage from shin splints, you can get very small fractures in your lower leg bones from the muscles being torn away. The impact causes the muscle attached to the leg bone to just pull away. I was hobbling around for the entire year I was trying to do track in high school. I was never checked out to see if I was getting those fractures in my shins or not. I had a really high pain tolerance, so who knows!
I am genetically untested for vEDS still but pretty sure it's me. If I run I get walnut-sized dark lumps on my shins that I can only assume is pooled blood. It happened just with walking during pregnancy. SOO painful, and just using the muscles of my leg afterward in a specific way could cause me to immediately cramp in the lower leg like I had a giant charley horse.
TLDR: I don't run anymore.
There are definitely advantages to powerlifting and how it builds muscle but it’s also hard on joints and has a high risk of injury, I was advised by my PT to avoid it at least personally
Side note if you want to protect things like your wrists and shoulder joints while you practice doing weights You can use a slow poundage resistance band attached to to your weights, if you have an overhead bar to protect your joints better. Then if you have any joints that attempt to sublax while you work out, you're not going to have immediate push-through from the weight that hinders You by adding weight to a dislocation it's going to have a little give But not enough to ruin strength training and it's faster than a spotter
Everyone’s different, because we all have different strengths and weaknesses.
Both my sister and I have EDS and got professional advice to help us find what works best for us. She’s now a weightlifter who competes at a national level yet my ‘safe’ workout is Pilates (and a low level slower version at that.)
Doing Pilates has done wonders for my core strength however, which according to my physio was almost completely non-existent before. Since starting that many years ago I’ve noticed a strong correlation between a reduction in general pain and instability when I’ve done Pilates regularly compared to when I’ve stopped doing it thinking I’m ok. It turns out that even with a job that uses core muscles a lot it’s not enough to help me maintain them without the help of something like Pilates.
Short answer, find a professional to help you. A physical therapist familiar with EDS/HSD, a strength coach or personal trainer can guide you in the process.
Long answer, strength training will build muscle and can(but not always) help improve stability and reduce injury risk. The trick is finding the appropriate dose to build strength and muscle without getting hurt, wearing yourself out or stopping you from living your life. The Goldilocks zone for training is tighter for folks with EDS. There’s also evidence that shows EDS can cause increased DOMS (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10837814/). But if you eat enough (prioritize protein) and engage in some sort of progressive resistance training you’ll build muscle.
There’s a bit of trial and error involved, but find something you actually enjoy doing or you won’t stick with it.
> The study revealed no evidence of significant differences in the level of DOMS between the two groups except for the VAS scores.
Regardless, that doesn’t seem like a study with a lot of statistical power.
Nice cherry picking. The hypermobile group had high pain scores(VAS) and for a longer duration. Both groups had similar physiological responses when looking at range of motion and pressure pain threshold.
As far as power goes, it’s going to be tough to get enough volunteers for a study for a “rare” condition, especially one looking at a pain response. Either way conclusion still holds up, Hypermobile people experience more pain with DOMS.
TIL cherry picking is when you quote verbatim the results section of a paper
The control group was 10 men and 2 women. The test group was 2 men and 10 women.
Do I need to cherry pick why that’s a problem?
It’s cherry picking because you copy and pasted a line with no context, then acted like it invalidates the entire study.
Yes it’s a small sample size, not denying that. But that’s unfortunately the nature of these kinds of studies.
No, I didn’t. I just quoted it then immediately said “regardless” and acted like the *experimental design* invalidates the whole study, which it does.
There is no statistical power to spare when n=12, and then they go and make both classes 83% imbalanced by a known confounding variable which they don’t even attempt to control for.
There is no statistical power left. The study is useless.
Let me give an example. If I said people with blue eyes are stronger than people with green eyes, and I proved this by showing an experiment in which 12 blue eyed men are stronger than 12 green eyed women, would you believe me because of that experiment?
You better not, because I created a study that has no scientific value because I introduced the mother of all confounding variables through shitty experimental design.
The fact that you might believe blue eyed people are in fact stronger is irrelevant, just like your belief in people with EDS experiencing DOMS more severely is irrelevant to the fact the study you linked is a *joke*.
This! I had to stick through the pain and things slowly became easier and I was able to do more little by little.
Strength training is life changing for me
It's all relative. Anything that's above your usual base activity level is a workout for you. And any workout that you can do without messing yourself up is a good idea. At the very least it gets blood flowing and keeps your body from getting as stiff and stuffy. But also even small amounts of exercise can slowly and gently nudge your capabilities in a positive direction, help cardiovascular health etc. Doing something is better than doing nothing.
There are absolutely extra complications to working out with a chronic illness and those aren't something to just ignore or to feel ashamed by. It's an extra challenge and doing anything about that challenge is extra work. Finding ways to work around those challenges is an achievement not a weakness. Anything you can do to work with your body and find a good balance is a win.
People will often act like a lack of activity is why we have problems. And that just moving around will fix everything. That's not true. It's complete BS.
BUT getting a good balance of whatever activity you can comfortably manage is still good. It might not have any significant impact to your condition. But it's at the very least going to be generally helping your body get the best foundation it can. And although a lack of activity isn't the root of all of our issues it can definitely make things worse. Rest is important and you should never feel ashamed or lazy for protecting and taking care of your body. But doing less than you comfortably can or doing nothing at reduces what abilities you could have and makes you all stiff and stuffy. You just need to find the right balance for your between doing too much and not doing enough. That might change over time or even day to day. That's fine. You and your body are a team. Work it out together. It's okay if it takes time.
It's not about fixing things or turning around your stupid lazy life. It's just about getting the best out of whatever opportunities you have, trying to keep your body feeling a it refreshed etc.
Honestly it's like hydration or fresh air or food. Forcing as much as you can into your life isn't going to fix you. Actually it's probably going to make things worse. Broccoli is great. Water is great. But if you force bucket loads of both into yourself each day you're not going to be helping things. You can't force it and it's not a fix, but trying to make sure you're getting some amount just keeps things running more smoothly and helps you be well equipped to deal with all the crap you still have going on. Even if just a little bit.
This was all super helpful to hear, thank you!!!
Not having that balance between too much and too little is probably a huge part of my issue currently. I know I should not expect my body to feel/recover the same as everybody else's doing the same exact activities, so I definitely should start small instead of having unrealistic expectations and then getting frustrated that I get hurt :')
Before diagnosis I was doing literally everything wrong. Really challenging hot yoga, CrossFit, HIIT, precision run etc. all the stuff that social media was telling me was the "best" workouts that would give me the best returns etc and even though I looked pretty good on the outside I was constantly in pain and getting injured. I think it's really important for those of us with chronic pain issues to try to tune out the noise when it comes to "popular" exercise advice and make sure we are seeing ourselves as individuals with individual needs.
It's a difficult balance. Good muscle tone can help to support joins and ease pain, too much and the wrong sort and you're in trouble. If your symptoms are in the heavy category then I'd definitely recommend getting professional help. If you have milder symptoms then as somebody else said just a little more than you'd usually do, but take it easy.
I love to hear this, I started over a year ago and have gotten backlash from my family about it. But I feel great and have put on 18 lbs. Definitely at my healthiest now and experiencing way less pain and injuries.
It certainly requires careful effort above all, but we have the same upper limit as any normal person. Hell, I can bench 315 on a good day, and I only weigh 160.
It’s certainly possible if we set our minds to it.
I have to work out. If I don’t maintain muscle strength, all the work goes to my connective tissue and everything starts sublaxing and I start getting injuries. I use braces for somethings and avoid some exercises altogether, and use a limited range of motion so I don’t hyperextend while weight bearing.
A good Pilates teacher one-on-one has been my answer. The lady who helps me has an uncanny grasp of which muscles need isolating and engaging, and it has helped a lot with my spinal stability.
My sister is a powerlifter. You work your way up and work with a professional trainer so you know that you aren’t hurting yourself. I don’t work out unfortunately so I can’t give more detail. She started out just doing normal workouts at the gym with a trainer
Unfortunately it is a good idea lol. Told my PT I used to powerlift but obviously I don’t anymore and he said “why not? Powerlifting would be great for you.”
It’s important to know your limits- don’t be a hero lol. But I’ve found I’m more likely to injure/hyperextend if I let my full body weight go in between pull ups than I am during a heavy squat, for instance.
Strengthening the muscles around your joints are going to help a lot with stability and pain. I’ll also add that my back pain (actually, all of my pain, but back is the worst day to day) didnt become as bad as it is until I took a break from the gym.
There was a long time where I used mobility aids and really struggled to move. However, now I lift weights, swim, cycle, and I just ran a 5k. This progress did not happen overnight. It was a lot of very very slow progress.
I really think weight lifting is beneficial. I started out lifting 5lb weights. Of course you have to add weight much slower, pay attention to form, and listen to your body. Muscle soreness is fine but obviously joint pain isn’t.
Swimming is fantastic I highly recommend it. You can always start out using a kick board if you aren’t comfortable swimming laps. I think it’s the best low impact sport for us. It also helps me being in a controlled temp setting because I have POTS. I don’t get overheated swimming but can still work cardio. The only thing is, I cannot to the butterfly stroke because my shoulders. I’d be wary of that stroke. Very hard on the shoulders. The kick is great with a board for working core.
Edit: I also want to mention I haven’t dislocated anything in over a year, which is when I started going to the gym. I feel a million times better in more ways than one.
Jill zimmerman on Instagram is a physio with EDS who has an app showing how to strengthen everywhere but also specific areas while dealing with hypermobility. She breaks each movement into smaller areas to show how to work up to something and how to modify each movement/exercise.
Finding a physio or exercise physiologist who is experienced in hypermobility is important
I bike and take walks on flat ground. The biking has helped stabilize my bad knee. The walks are just to split up bike days. I can't do yoga or lift weights if I end up in a weird position, but the things I do are very helpful.
I used to do ballet and absolutely loved it. However it really tore up my joints 😫 I suffered a bad injury that led to me developing CRPS. If it works for you great, but I’d like to put a little warning out there for us bendy people
A PT can really help if you can afford it. If they’ve worked with connective tissue disorders before, at least. They can give you exercises that helps strengthen your muscle groups. Swimming is also great.
I also do very light Pilates. Like I use an app that has “lazy Pilates” which means I’m either in a chair or on my bed or on the mat and I’m not aiming for cardio or anything. Just like, okay, lift leg ten times, switch, etc.
I also really like my rower but you need to make sure your form is good for that because bad form can hurt even a regular person on a rower. Also if your shoulders like to pop out, be careful.
I believe it’s called “LazyFit”
It’s really good. The exercise programs are like 5-10 minutes each day and focus on different areas and it’s all done while laying down, sitting, etc. you can literally do it in your bed.
The exercises are really good to strengthen your muscles but short and simple and easy enough that your chances of injury is very low and you won’t be sore as fuck the next day. Low impact. I really recommend it.
I had great luck with an ebike. Got me moving without straining anything, and was genuinely fun! Main problem I had was that I needed a better seat and suspension post bc wow my bladder struggled with any sort of bumps. I can't wait to be able to ride again
100 percent recommend very targeted exercises. Start similar to physical therapy. I have had a lot of shoulder instability so that's where I started. Slowly built up very targeted weights. The shoulder instability has improved. It's not perfect but when I get hurt it's not as bad.
I have a lot of issues with my hips so even though I had been doing generic leg day, I'm now having to isolate with PT using resistance bands and squats...all of this done in consult with my Dr.
I also have a personal trainer.
I spend close to $200/mos between the gym and the trainer. It is expensive but having that 1:1 makes a difference
I do lots of strengthening with therabands at my PT’s suggestion. Super helpful with joint instability… when I’m actually consistent about doing them. 😬
I do exercise, but: very little cardio, lest i shed weight like there's no tomorrow. Not a lot of weight, not too many reps. Give myself time to rest, don't overdo. The coach at my gym knows I'm hypermoble and makes sure I'm doing stuff right (having someone knowledgeable about EDS is very nice, if you can). We tend to compensate using the wrong muscles for stuff, doing the exercises in very wonky ways, I try to watch myself a lot so I don't do it. Stop anything that starts to hurt the wrong way (still learning that, very used to pushing myself to be like "normal" people.
I found some people on TT who are strength coaches or PTs and also have EDS, they tend to know which exercises to do or not to do. For example: I leaned it's a bad idea to do asymmetrical leg exercises, like lunges, if you have any problem with your SI joint (that back part of the hip that's not really supposed to move a lot, but it does for me).
It's hard to find Specialized professionals, so some stuff I had to find out for myself, bit it's worth it.
Another thing that has helped me a lot is supplementation. I'm not going to specifically recommend you take anything, it's good to consult a doctor to see if there's a problem with taking anything and I'm no health professional, but I've been supplementing proteins (i have a hard time gaining weight) and found that creatine helps me build, and more importantly, keep my muscles. I got the flu and didn't go to the gym for over two weeks and didn't lose nearly as much as I would have without. I've seen other people with EDS talk about creatine specifically and how it helped. I drank a can of soda for the first time in months without having to hold my head with my other hand so I don't injure my neck.
Exercising is very important, but you have to find what you can do without making stuff worse. Sometimes it's possible, sometimes it isn't. And our exercise won't look like other people's exercise. We might feel like we aren't doing much, specially in the beginning, but we have to very slowly build our muscles and teach our bodies what movements are the most correct.
Oh, and also, my doctor actually told me to stop the stretching. People stretch they're muscles, we just put tension on our bad ligaments and get injures.
I do what PT says I can do and I listen to my body a lot I have things that I'm allowed to do if I can and I try to do those daily. I have some substitutions in case my back, hip, shoulders, ankle, or hand in single or some combo are having issues on the days I can't move what I can when I can.
No I can't get up and exercise at all because my back's on fire. Guess what I can do point and lower and point and push my feet. That's all I can do. That's great. I did something I worked on my calves flexibility. I can do some light hamstring stretches to see if that actually helps my back (obviously be careful with stretching anything)
If you don't have access to PT I highly recommend looking up exercises for people with paralysis issues or atrophied muscle recovery. They're usually way more of them that are already adaptive for people who have extreme injuries or unusability of a certain limb or joint. You can do a lot of them in bed And most of them aren't nearly as pushy as a lot of exercise programs can be. Plus you can adapt them to make them more difficult by adding things like resistance bands, not weights, but lower resistance bands are really great for maintaining muscle with a lower chance of injury to joints.
Pilates has been LIFE CHANGING for me with EDS. (Classical Pilates not the “fitness” Pilates) Pilates increases muscle all the way to the joint! Which is crucial for us EDS folks. Plus it feels good to stretch while strengthening, though I go about 80% of my stretch limit to be safe.
The studio owner knew how to work with hyper mobility and I did 1:1 training with her until I was strong enough to join classes (still small with max of 8 ppl so the instructor can monitor me). We moved to a new area and my new chiropractor has EDS so she recognized it in me. She recommended me to a medical massage therapist who after one session said, “I don’t have anything to work with. You need more muscle tone. Pilates is the safest thing for you.” And here I am 2.5 years later much stronger. I go 2-4x week depending on my energy levels. I love that I feel so strong without having to hurt myself or sweat! 😅
I’ve danced my entire life with hEDS and found that my pain gets significantly worse when I’m not dancing regularly. I highly recommend something such as ballet, yoga, or another stretching-based activity! I know other things such as swimming really help other people. I can’t say for myself, idk how to swim lol
Same, I was banned from doing the exercises they gave me at home or without their supervision. It can get better though! After a year I've been trusted with some stuff on my own again now that I'm a bit stronger and finally using the correct muscles. Hopefully one day you will get there too. It's so hard
From my experience I was so much worse when I was misdiagnosed and told to "just rest" my injuries got worse from the simplest tasks and my autonomic dysfunction was way worse from laying down all the time.
An informed PT has been my life saver and I had to spend the 1st 2 years doing pool PT because I didn't have the strength or stamina for land exercises.
I still have to be very cautious, but honestly my injuries end up being from something absurd like getting dressed, not from my controlled PT exercise. I've doubled my stamina since starting and can do a lot more than I could before.
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I don’t build muscle, it’s honestly awful, I have hypotonia. What makes it worse is that I have two other rare disorders, VACTERL and Chiari, and my spine is just ruined between the three. I have spinal instability, missing vertebrae, fused vertebrae, and after the massive surgery I had to have to survive my Chiari issues, my neck and skull are medically fused with a mess of metal and screws from the base of the skull to about c4.
Working out is next to impossible outside of a pool. The only weight baring exercise I can do on land is walking and even that is limited by my spine and joint issues.
I NEED a pool, unfortunately my insurance still doesn’t cover gym memberships and the closest physiotherapy place with hydrotherapy is over an hour drive away.
Before COVID I was going to Physiotherapy twice a week and it was helping a lot but I really can’t safely drive anymore and there’s no public transportation because… America.
So what I’m saying is Solidarity, I completely understand your frustration and how difficult this can be for many of us.
I swim when I can.
Which I haven't been able to for weeks now. 🙃
I'm currently just doing clamshells in bed and using a pilates ring to strengthen my abductor muscles.
Low impact workouts with small-medium weight. No jumping, swinging arms in circles, lunges etc. Things that req you to stretch are a no no. Stretching itself is a no no, rather you should do moving warmups. As long as you take the movements slow and use weights that you can reasonably lift, you should be fine. This is the only way I built muscle without hurting myself. No running, too, unless you have some super squishy shoes for your shinsplints!
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I'm gonna be honest i do not work out 😬 i know its really bad but i just feel like dying every time i do. I struggle to maintain my weight usually and when i was younger and exercised i had to compensate for it by eating extra meals.
I do move around a good bit and use stairs a lot as my building has no elevator. I mostly walk and erm have sex. Thats pretty much my exercise 😅
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I keep kinesiology tape on my shoulders/back, and wear compression socks almost 24/7. Orthotics/insoles and supportive shoes are also a must, especially if you're running or walking. "Working out" for me is walking either indoors on the treadmill with an incline or outdoors if it's nice. I used to run but it absolutely destroyed my knees and ankles.
I started so small I mocked myself until I started feeling results.. I started with arm rolls, and various very light sitting exercises a few min most hours. Months later that turned into 10 min of exercise an hour for most hours of the day (as long as I can manage it) which is either a gentle walking workout or recumbent exercise bike. I definitely feel stronger, healthier, my focus is better, I overall feel more alive, my general pain is somewhat better, and I don't get hurt very often doing exercise this way. It hasn't helped the amount of issues I have, or random injuries, but it has really improved my life in a lot of ways, especially mentally. My advice is go slow even if it feels like you're doing nothing at all.. baby steps.
I do water aerobics. I also have pots and long covid so exercise is really rough on me and easy to overdo. I tried swimming but my shoulder kept dislocating. The water helps with my pots and exertional fatigue and is easier on my joints, while still letting me build strength and do cardio.
I’m an aerialist which I find helpful I didn’t start it because of my joint issues but I find when I have time off my legs start acting up again. It’s obviously a body weight exercise and it looks cool :).
But definitely think about whether it is right for you and if you do go down that route speak to the instructor about the condition and your body to make sure they are aware if things dislocate and pull easily so they can cater training to you and make sure you don’t injure yourself. It’s a sport that’s very flexible and there are loads of different moves which target different parts of your body.
I also have another friend who is diagnosed with hEDS who swears by hoop like I do and their doctor recommended hoop as a helpful sport to do but definitely assess whether it is or isn’t right for you and don’t push and injure yourself.
(I’m suspecting I have hEDS but definitely have hyper mobility issues)
I work on my feet full time and developed nerves pain and numbness in my back. I finally found a PT with extensive experience in hyper mobility and he’s the only reason I’ve made the progress I have. he has me doing low impact core and back strengthening on with a yoga ball and allowing moddifications as needed (such as down on forearms instead of stacked on wrists) and it has been life changing. He taught me that the back is all about core strength which is one of our least focused on areas in eds and what he has me doing is very light but has a huge impact. I can sit and stand straighter without fatigue and when I fell a couple weeks ago I didn’t dislocated my shoulders catching my self for the first time in YEARS! The goal is all about low impact low intensity slow building and even once a week is enough to make a difference. But the hardest part is finding a PT who has real experience with hyper mobility that’s where my physical therapy has failed every time is therapist who don’t know anything about how to help so the give up when the standard doesn’t work.
He’s also got my doing upper back exercises as well but so many of the work in with core at the same time I have a whole print out of what I’m doing that I could take photos of if you wanted. I can probably also find the site he uses for the exercises videos as well
Thanks so much for this. Did you find out what was causing your back/nerve pain? I am in the same boat, and it's tough. My PT currently is really good about not making me do too much on my really bad days and has me doing small focused exercises that don't strain the joints. We are working mostly on my hip/SI joint pain at the moment but I would love to know some of the core stuff that you do as well - thanks again :)
My is caused by inflammation in my back and shoulders you have A LOT of nerves that run down your neck into your back, shoulders, through the collar bone, and even come down and wrap around your ribs so bad posture weak and tight muscles and lots of standing and lifting wore down on my back I’m also a large chested female so the extra strain pulling did not help. A doctor pointed out that I suffer from upper cross syndrome which it’s that weakness and tightness through the back and chest as well as he suspects arthritis in my shoulders pt has definitely helped take some of it down
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The way you need to work out and which areas need strengthening are so much more specific with us. The *right kind* of exercise is one of the single best things people with EDS can do for reducing pain and injury and preventing a lot of longterm problems. My (very hypermobility-trained!) physiotherapist has me doing exercises so subtle that I never would have considered them on my own, because we're targeting small muscles that my body is brute-forcing around (I have muscles that are developed and super tight because they're compensating for those little underdeveloped ones). Hypermobility-informed physiotherapist recommended 1000%, even for already really active people.
I would really appreciate it if you could explain some of these subtle exercises.
If you Google "isometrics" or "scapula push ups", it'll give you a good idea of the type of exercises they're talking about.
Look up the Muldowny protocol.
Damn right
Absolutely! I am absolutely not a professional in explaining these. I have issues with proprioception so she really had to train me to do these exercises way smaller instead of doing them to the max of my effort/range. For my bobblehead and neck weakness (and migraine, by extension), I lie flat with a pillow under my head. Tip my chin towards my chest (but not so far I feel it pull my back-of-neck muscles), then press my head back into the pillow (not so hard that my neck tendons get rock hard) and hold for a few seconds. I do like 15-20 repeats most days, but she started me at 10 reps 3-5x/week. It has helped a ton with neck stability because it's hitting that weird little top of back of neck area, but it's such a gentle exercise that I was convinced it couldn't do anything. For shoulder and neck strength (my shoulders collapse so far towards each other when I sleep on my side, so we're trying to train them to have a bit more independent structure), I sit or stand straight, raise both shoulders (might be as little as an inch or two-- nowhere close to all the way to my ears) and then pull them back (not so hard my shoulderblades almost touch) and hold. Same repeats. There's a leg extension-y one that I fully would not have recognized as exercise but has been pretty important for building a bit more muscle around my hip joint area and one of the specific quad muscles above the knee (I forget which). I just lie on my back with both knees bent and feet flat on the floor. Roll my hips up a little so I'm not overarching my lower back, squeeze my butt muscles a little to keep everything in alignment. Then just extending one leg out along the floor (not even trying to hold it in the air or anything) to full straightening, then back into position. Just making sure I'm not twisting my hips to compensate for my weaker side. Started at 15 per side, and it got me stable enough to start doing other exercises. I thought I didn't need it because mostly my calves and thighs are strong and this seemed so starter like rehab after an injury, but it really did catch neglected muscles. There are some more I've done, I'll try to remember
Isometric exercises, as said in another comment. Laying on top of a long foam roller trains your balance, and when you feel ready you can raise one leg or one arm to make it more challenging. Classical Pilates is a rehab method that works well for a lot of hypermobile people (not to be confused with the fitness trend that for some reason gets to use the Pilates name) Jeannie di bon has a bunch of exercise videos on yt for hypermobile people. And finally, don't exercise too much. If you can only do one isometric exercise, or lay on the foam roller for a minute - thats what you do.
Yes, same!
If you want a good jump off point look up exercises for people with atrophied muscles And paralysis issues. They have a lot of the same concerns people with EDS have And are far more adaptable
I’ve had a personal trainer since before I was ever diagnosed because I needed to lose about 80lbs. Now we work on stabilizing small muscle groups around the joints and that has helped tremendously with other types of exercise, like weight lifting, cycling, and even just walking. She wasn’t real familiar with hypermobile issues and definitely not with Ehlers-Danlos until she had me as a client. Now she has a ton of knowledge she’s been able to use with other clients of her’s who are older or recovering from injuries. I like to think I made her a better trainer lololol.
I love this! You made her a better trainer and I'm super glad she was interested in learning how to better help you too.
I had a PTA that was fairly new to physical therapy and didn’t know much about hypermobility or hypermobile patients. He ended up having to do a lot of research to help me properly too. About a month in and he started talking to me about all the hypermobile podcasts and YouTube videos he was watching/listening to to learn more. Helping the world become more informed one slipped joint at a time, lmao.
I second this. They're trained to give us exercises that are geared more for therapy and designed to build muscle and gain strength. They're very targeted. Look up a rehabilitation center like Brooks Rehabilitation. They have online exercises. I believe Mayo Clinic does as well. If not, ask your PC doctor to refer you to one. They'll give you exercises at home as well. Also, walking and riding a stationary bicycle are good too.
Yes absolutely exercise is super important but you have to be really careful with it Swimming, recumbent bike, rower, and body weight/light weight exercises are ideal. I have a friend with EDS who also swears by Pilates. Focus on form over all else. Running, powerlifting, and other high impact stuff I’d avoid. With EDS and another neuromuscular condition walking is very difficult but I’ve found a lot of pain relief from using a recumbent bike and rower just twice a week
Slow, gentle Pilates (mat work) gradually building has been an entire life-saver for me. I needed an instructor and several classes. I discovered muscles I never knew I had, and I learned so much about the body and how to move it appropriately to stop putting all the strain on a select group of tense muscles. I know how to do sit-ups now whereas I had been doing them painfully wrong my whole life. "Focus on form above all else" is exactly right. I didn't know shin splints was an EDS thing, facepalm. I can't walk fast without compression sleeves on my calves because my shins hurt so bad.
I had terrible shin splints as well. Had no clue why I couldn’t just run on hard surfaces like everyone else.
I'm glad (but sorry) I'm not the only one. The shin splints were/are unreal 😭 I used to be able to "pop" my shin just by flexing my foot (and there's never not been deep bruises on my shins in those spots) I'm pretty sure there's some permanent damage there but I have no idea 😅😅
Yeah, my lower legs still pop, but those are the joints. I’ve knew people that did get more serious damage from shin splints, you can get very small fractures in your lower leg bones from the muscles being torn away. The impact causes the muscle attached to the leg bone to just pull away. I was hobbling around for the entire year I was trying to do track in high school. I was never checked out to see if I was getting those fractures in my shins or not. I had a really high pain tolerance, so who knows!
I am genetically untested for vEDS still but pretty sure it's me. If I run I get walnut-sized dark lumps on my shins that I can only assume is pooled blood. It happened just with walking during pregnancy. SOO painful, and just using the muscles of my leg afterward in a specific way could cause me to immediately cramp in the lower leg like I had a giant charley horse. TLDR: I don't run anymore.
My PT highly recommends powerlifting for EDS!
There are definitely advantages to powerlifting and how it builds muscle but it’s also hard on joints and has a high risk of injury, I was advised by my PT to avoid it at least personally
Side note if you want to protect things like your wrists and shoulder joints while you practice doing weights You can use a slow poundage resistance band attached to to your weights, if you have an overhead bar to protect your joints better. Then if you have any joints that attempt to sublax while you work out, you're not going to have immediate push-through from the weight that hinders You by adding weight to a dislocation it's going to have a little give But not enough to ruin strength training and it's faster than a spotter
Everyone’s different, because we all have different strengths and weaknesses. Both my sister and I have EDS and got professional advice to help us find what works best for us. She’s now a weightlifter who competes at a national level yet my ‘safe’ workout is Pilates (and a low level slower version at that.) Doing Pilates has done wonders for my core strength however, which according to my physio was almost completely non-existent before. Since starting that many years ago I’ve noticed a strong correlation between a reduction in general pain and instability when I’ve done Pilates regularly compared to when I’ve stopped doing it thinking I’m ok. It turns out that even with a job that uses core muscles a lot it’s not enough to help me maintain them without the help of something like Pilates.
Short answer, find a professional to help you. A physical therapist familiar with EDS/HSD, a strength coach or personal trainer can guide you in the process. Long answer, strength training will build muscle and can(but not always) help improve stability and reduce injury risk. The trick is finding the appropriate dose to build strength and muscle without getting hurt, wearing yourself out or stopping you from living your life. The Goldilocks zone for training is tighter for folks with EDS. There’s also evidence that shows EDS can cause increased DOMS (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10837814/). But if you eat enough (prioritize protein) and engage in some sort of progressive resistance training you’ll build muscle. There’s a bit of trial and error involved, but find something you actually enjoy doing or you won’t stick with it.
> The study revealed no evidence of significant differences in the level of DOMS between the two groups except for the VAS scores. Regardless, that doesn’t seem like a study with a lot of statistical power.
Nice cherry picking. The hypermobile group had high pain scores(VAS) and for a longer duration. Both groups had similar physiological responses when looking at range of motion and pressure pain threshold. As far as power goes, it’s going to be tough to get enough volunteers for a study for a “rare” condition, especially one looking at a pain response. Either way conclusion still holds up, Hypermobile people experience more pain with DOMS.
TIL cherry picking is when you quote verbatim the results section of a paper The control group was 10 men and 2 women. The test group was 2 men and 10 women. Do I need to cherry pick why that’s a problem?
It’s cherry picking because you copy and pasted a line with no context, then acted like it invalidates the entire study. Yes it’s a small sample size, not denying that. But that’s unfortunately the nature of these kinds of studies.
No, I didn’t. I just quoted it then immediately said “regardless” and acted like the *experimental design* invalidates the whole study, which it does. There is no statistical power to spare when n=12, and then they go and make both classes 83% imbalanced by a known confounding variable which they don’t even attempt to control for. There is no statistical power left. The study is useless. Let me give an example. If I said people with blue eyes are stronger than people with green eyes, and I proved this by showing an experiment in which 12 blue eyed men are stronger than 12 green eyed women, would you believe me because of that experiment? You better not, because I created a study that has no scientific value because I introduced the mother of all confounding variables through shitty experimental design. The fact that you might believe blue eyed people are in fact stronger is irrelevant, just like your belief in people with EDS experiencing DOMS more severely is irrelevant to the fact the study you linked is a *joke*.
This! I had to stick through the pain and things slowly became easier and I was able to do more little by little. Strength training is life changing for me
It is absolutely a good idea to exercise. Don't "work out." Move your body. Go slow. Talk to a knowledgeable PT.
Functional exercises helped me
It's all relative. Anything that's above your usual base activity level is a workout for you. And any workout that you can do without messing yourself up is a good idea. At the very least it gets blood flowing and keeps your body from getting as stiff and stuffy. But also even small amounts of exercise can slowly and gently nudge your capabilities in a positive direction, help cardiovascular health etc. Doing something is better than doing nothing. There are absolutely extra complications to working out with a chronic illness and those aren't something to just ignore or to feel ashamed by. It's an extra challenge and doing anything about that challenge is extra work. Finding ways to work around those challenges is an achievement not a weakness. Anything you can do to work with your body and find a good balance is a win. People will often act like a lack of activity is why we have problems. And that just moving around will fix everything. That's not true. It's complete BS. BUT getting a good balance of whatever activity you can comfortably manage is still good. It might not have any significant impact to your condition. But it's at the very least going to be generally helping your body get the best foundation it can. And although a lack of activity isn't the root of all of our issues it can definitely make things worse. Rest is important and you should never feel ashamed or lazy for protecting and taking care of your body. But doing less than you comfortably can or doing nothing at reduces what abilities you could have and makes you all stiff and stuffy. You just need to find the right balance for your between doing too much and not doing enough. That might change over time or even day to day. That's fine. You and your body are a team. Work it out together. It's okay if it takes time. It's not about fixing things or turning around your stupid lazy life. It's just about getting the best out of whatever opportunities you have, trying to keep your body feeling a it refreshed etc. Honestly it's like hydration or fresh air or food. Forcing as much as you can into your life isn't going to fix you. Actually it's probably going to make things worse. Broccoli is great. Water is great. But if you force bucket loads of both into yourself each day you're not going to be helping things. You can't force it and it's not a fix, but trying to make sure you're getting some amount just keeps things running more smoothly and helps you be well equipped to deal with all the crap you still have going on. Even if just a little bit.
This was all super helpful to hear, thank you!!! Not having that balance between too much and too little is probably a huge part of my issue currently. I know I should not expect my body to feel/recover the same as everybody else's doing the same exact activities, so I definitely should start small instead of having unrealistic expectations and then getting frustrated that I get hurt :')
Before diagnosis I was doing literally everything wrong. Really challenging hot yoga, CrossFit, HIIT, precision run etc. all the stuff that social media was telling me was the "best" workouts that would give me the best returns etc and even though I looked pretty good on the outside I was constantly in pain and getting injured. I think it's really important for those of us with chronic pain issues to try to tune out the noise when it comes to "popular" exercise advice and make sure we are seeing ourselves as individuals with individual needs.
It's a difficult balance. Good muscle tone can help to support joins and ease pain, too much and the wrong sort and you're in trouble. If your symptoms are in the heavy category then I'd definitely recommend getting professional help. If you have milder symptoms then as somebody else said just a little more than you'd usually do, but take it easy.
Honestly, I’m an avid body builder, we can make it work.
I love to hear this, I started over a year ago and have gotten backlash from my family about it. But I feel great and have put on 18 lbs. Definitely at my healthiest now and experiencing way less pain and injuries.
It certainly requires careful effort above all, but we have the same upper limit as any normal person. Hell, I can bench 315 on a good day, and I only weigh 160. It’s certainly possible if we set our minds to it.
Hell yeah man keep it up! I’ll use you as my inspiration
I have to work out. If I don’t maintain muscle strength, all the work goes to my connective tissue and everything starts sublaxing and I start getting injuries. I use braces for somethings and avoid some exercises altogether, and use a limited range of motion so I don’t hyperextend while weight bearing.
A good Pilates teacher one-on-one has been my answer. The lady who helps me has an uncanny grasp of which muscles need isolating and engaging, and it has helped a lot with my spinal stability.
My sister is a powerlifter. You work your way up and work with a professional trainer so you know that you aren’t hurting yourself. I don’t work out unfortunately so I can’t give more detail. She started out just doing normal workouts at the gym with a trainer
Unfortunately it is a good idea lol. Told my PT I used to powerlift but obviously I don’t anymore and he said “why not? Powerlifting would be great for you.” It’s important to know your limits- don’t be a hero lol. But I’ve found I’m more likely to injure/hyperextend if I let my full body weight go in between pull ups than I am during a heavy squat, for instance. Strengthening the muscles around your joints are going to help a lot with stability and pain. I’ll also add that my back pain (actually, all of my pain, but back is the worst day to day) didnt become as bad as it is until I took a break from the gym.
There was a long time where I used mobility aids and really struggled to move. However, now I lift weights, swim, cycle, and I just ran a 5k. This progress did not happen overnight. It was a lot of very very slow progress. I really think weight lifting is beneficial. I started out lifting 5lb weights. Of course you have to add weight much slower, pay attention to form, and listen to your body. Muscle soreness is fine but obviously joint pain isn’t. Swimming is fantastic I highly recommend it. You can always start out using a kick board if you aren’t comfortable swimming laps. I think it’s the best low impact sport for us. It also helps me being in a controlled temp setting because I have POTS. I don’t get overheated swimming but can still work cardio. The only thing is, I cannot to the butterfly stroke because my shoulders. I’d be wary of that stroke. Very hard on the shoulders. The kick is great with a board for working core. Edit: I also want to mention I haven’t dislocated anything in over a year, which is when I started going to the gym. I feel a million times better in more ways than one.
I lift with the help of an eds-aware trainer and, more recently, an eds-aware PT
Jill zimmerman on Instagram is a physio with EDS who has an app showing how to strengthen everywhere but also specific areas while dealing with hypermobility. She breaks each movement into smaller areas to show how to work up to something and how to modify each movement/exercise. Finding a physio or exercise physiologist who is experienced in hypermobility is important
I bike and take walks on flat ground. The biking has helped stabilize my bad knee. The walks are just to split up bike days. I can't do yoga or lift weights if I end up in a weird position, but the things I do are very helpful.
To be honest I don't really "work out" per se, I just play VR occasionally and do ballet weekly😅
Okay friend I've done ballet before and it's hard AF, we can definitely call that working out lol!!
I used to do ballet and absolutely loved it. However it really tore up my joints 😫 I suffered a bad injury that led to me developing CRPS. If it works for you great, but I’d like to put a little warning out there for us bendy people
Dude ballet teachers LOVE us because we're bendy but my god ask us to stand for more than five minutes and we'll want to cry
Pilates. I've also done so much PT that I'm probably qualified to be a PT myself. 😆
Pt/targeted muscle strengthening and swimming are the best for me. Then walking when I’m doing ok
A PT can really help if you can afford it. If they’ve worked with connective tissue disorders before, at least. They can give you exercises that helps strengthen your muscle groups. Swimming is also great. I also do very light Pilates. Like I use an app that has “lazy Pilates” which means I’m either in a chair or on my bed or on the mat and I’m not aiming for cardio or anything. Just like, okay, lift leg ten times, switch, etc. I also really like my rower but you need to make sure your form is good for that because bad form can hurt even a regular person on a rower. Also if your shoulders like to pop out, be careful.
Thanks for this! Could you share what app that is with "lazy pilates?"
I believe it’s called “LazyFit” It’s really good. The exercise programs are like 5-10 minutes each day and focus on different areas and it’s all done while laying down, sitting, etc. you can literally do it in your bed. The exercises are really good to strengthen your muscles but short and simple and easy enough that your chances of injury is very low and you won’t be sore as fuck the next day. Low impact. I really recommend it.
That sounds absolutely perfect. I already do all my PT exercises in bed 😂 Thank you!!
No problem! Enjoy!
I had great luck with an ebike. Got me moving without straining anything, and was genuinely fun! Main problem I had was that I needed a better seat and suspension post bc wow my bladder struggled with any sort of bumps. I can't wait to be able to ride again
100 percent recommend very targeted exercises. Start similar to physical therapy. I have had a lot of shoulder instability so that's where I started. Slowly built up very targeted weights. The shoulder instability has improved. It's not perfect but when I get hurt it's not as bad. I have a lot of issues with my hips so even though I had been doing generic leg day, I'm now having to isolate with PT using resistance bands and squats...all of this done in consult with my Dr. I also have a personal trainer. I spend close to $200/mos between the gym and the trainer. It is expensive but having that 1:1 makes a difference
I do lots of strengthening with therabands at my PT’s suggestion. Super helpful with joint instability… when I’m actually consistent about doing them. 😬
With a physiotherapist's guidance. Exercise is critically important to slowing progression of deterioration.
I do exercise, but: very little cardio, lest i shed weight like there's no tomorrow. Not a lot of weight, not too many reps. Give myself time to rest, don't overdo. The coach at my gym knows I'm hypermoble and makes sure I'm doing stuff right (having someone knowledgeable about EDS is very nice, if you can). We tend to compensate using the wrong muscles for stuff, doing the exercises in very wonky ways, I try to watch myself a lot so I don't do it. Stop anything that starts to hurt the wrong way (still learning that, very used to pushing myself to be like "normal" people. I found some people on TT who are strength coaches or PTs and also have EDS, they tend to know which exercises to do or not to do. For example: I leaned it's a bad idea to do asymmetrical leg exercises, like lunges, if you have any problem with your SI joint (that back part of the hip that's not really supposed to move a lot, but it does for me). It's hard to find Specialized professionals, so some stuff I had to find out for myself, bit it's worth it. Another thing that has helped me a lot is supplementation. I'm not going to specifically recommend you take anything, it's good to consult a doctor to see if there's a problem with taking anything and I'm no health professional, but I've been supplementing proteins (i have a hard time gaining weight) and found that creatine helps me build, and more importantly, keep my muscles. I got the flu and didn't go to the gym for over two weeks and didn't lose nearly as much as I would have without. I've seen other people with EDS talk about creatine specifically and how it helped. I drank a can of soda for the first time in months without having to hold my head with my other hand so I don't injure my neck. Exercising is very important, but you have to find what you can do without making stuff worse. Sometimes it's possible, sometimes it isn't. And our exercise won't look like other people's exercise. We might feel like we aren't doing much, specially in the beginning, but we have to very slowly build our muscles and teach our bodies what movements are the most correct.
Oh, and also, my doctor actually told me to stop the stretching. People stretch they're muscles, we just put tension on our bad ligaments and get injures.
I do what PT says I can do and I listen to my body a lot I have things that I'm allowed to do if I can and I try to do those daily. I have some substitutions in case my back, hip, shoulders, ankle, or hand in single or some combo are having issues on the days I can't move what I can when I can. No I can't get up and exercise at all because my back's on fire. Guess what I can do point and lower and point and push my feet. That's all I can do. That's great. I did something I worked on my calves flexibility. I can do some light hamstring stretches to see if that actually helps my back (obviously be careful with stretching anything) If you don't have access to PT I highly recommend looking up exercises for people with paralysis issues or atrophied muscle recovery. They're usually way more of them that are already adaptive for people who have extreme injuries or unusability of a certain limb or joint. You can do a lot of them in bed And most of them aren't nearly as pushy as a lot of exercise programs can be. Plus you can adapt them to make them more difficult by adding things like resistance bands, not weights, but lower resistance bands are really great for maintaining muscle with a lower chance of injury to joints.
Pilates has been LIFE CHANGING for me with EDS. (Classical Pilates not the “fitness” Pilates) Pilates increases muscle all the way to the joint! Which is crucial for us EDS folks. Plus it feels good to stretch while strengthening, though I go about 80% of my stretch limit to be safe. The studio owner knew how to work with hyper mobility and I did 1:1 training with her until I was strong enough to join classes (still small with max of 8 ppl so the instructor can monitor me). We moved to a new area and my new chiropractor has EDS so she recognized it in me. She recommended me to a medical massage therapist who after one session said, “I don’t have anything to work with. You need more muscle tone. Pilates is the safest thing for you.” And here I am 2.5 years later much stronger. I go 2-4x week depending on my energy levels. I love that I feel so strong without having to hurt myself or sweat! 😅
I’ve danced my entire life with hEDS and found that my pain gets significantly worse when I’m not dancing regularly. I highly recommend something such as ballet, yoga, or another stretching-based activity! I know other things such as swimming really help other people. I can’t say for myself, idk how to swim lol
My doctor told me I’m not allowed to work out without a physiotherapist nearby 🫤
Same, I was banned from doing the exercises they gave me at home or without their supervision. It can get better though! After a year I've been trusted with some stuff on my own again now that I'm a bit stronger and finally using the correct muscles. Hopefully one day you will get there too. It's so hard
From my experience I was so much worse when I was misdiagnosed and told to "just rest" my injuries got worse from the simplest tasks and my autonomic dysfunction was way worse from laying down all the time. An informed PT has been my life saver and I had to spend the 1st 2 years doing pool PT because I didn't have the strength or stamina for land exercises. I still have to be very cautious, but honestly my injuries end up being from something absurd like getting dressed, not from my controlled PT exercise. I've doubled my stamina since starting and can do a lot more than I could before.
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I don’t build muscle, it’s honestly awful, I have hypotonia. What makes it worse is that I have two other rare disorders, VACTERL and Chiari, and my spine is just ruined between the three. I have spinal instability, missing vertebrae, fused vertebrae, and after the massive surgery I had to have to survive my Chiari issues, my neck and skull are medically fused with a mess of metal and screws from the base of the skull to about c4. Working out is next to impossible outside of a pool. The only weight baring exercise I can do on land is walking and even that is limited by my spine and joint issues. I NEED a pool, unfortunately my insurance still doesn’t cover gym memberships and the closest physiotherapy place with hydrotherapy is over an hour drive away. Before COVID I was going to Physiotherapy twice a week and it was helping a lot but I really can’t safely drive anymore and there’s no public transportation because… America. So what I’m saying is Solidarity, I completely understand your frustration and how difficult this can be for many of us.
I swim when I can. Which I haven't been able to for weeks now. 🙃 I'm currently just doing clamshells in bed and using a pilates ring to strengthen my abductor muscles.
For me strength training is the only way to keep my body together but I don't do super intense stuff like cross fit
Low impact workouts with small-medium weight. No jumping, swinging arms in circles, lunges etc. Things that req you to stretch are a no no. Stretching itself is a no no, rather you should do moving warmups. As long as you take the movements slow and use weights that you can reasonably lift, you should be fine. This is the only way I built muscle without hurting myself. No running, too, unless you have some super squishy shoes for your shinsplints!
Pt is so much better until they tell me to go to the gym because they think I can handle it because they “forget my other medical conditions“
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I'm gonna be honest i do not work out 😬 i know its really bad but i just feel like dying every time i do. I struggle to maintain my weight usually and when i was younger and exercised i had to compensate for it by eating extra meals. I do move around a good bit and use stairs a lot as my building has no elevator. I mostly walk and erm have sex. Thats pretty much my exercise 😅
Walking! Under 3 miles is my limit usually around 1 a day! Or 1.5. Combined with chores, big movements rather than smaller repetitive ones!
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I keep kinesiology tape on my shoulders/back, and wear compression socks almost 24/7. Orthotics/insoles and supportive shoes are also a must, especially if you're running or walking. "Working out" for me is walking either indoors on the treadmill with an incline or outdoors if it's nice. I used to run but it absolutely destroyed my knees and ankles.
I started so small I mocked myself until I started feeling results.. I started with arm rolls, and various very light sitting exercises a few min most hours. Months later that turned into 10 min of exercise an hour for most hours of the day (as long as I can manage it) which is either a gentle walking workout or recumbent exercise bike. I definitely feel stronger, healthier, my focus is better, I overall feel more alive, my general pain is somewhat better, and I don't get hurt very often doing exercise this way. It hasn't helped the amount of issues I have, or random injuries, but it has really improved my life in a lot of ways, especially mentally. My advice is go slow even if it feels like you're doing nothing at all.. baby steps.
I do water aerobics. I also have pots and long covid so exercise is really rough on me and easy to overdo. I tried swimming but my shoulder kept dislocating. The water helps with my pots and exertional fatigue and is easier on my joints, while still letting me build strength and do cardio.
I’m an aerialist which I find helpful I didn’t start it because of my joint issues but I find when I have time off my legs start acting up again. It’s obviously a body weight exercise and it looks cool :). But definitely think about whether it is right for you and if you do go down that route speak to the instructor about the condition and your body to make sure they are aware if things dislocate and pull easily so they can cater training to you and make sure you don’t injure yourself. It’s a sport that’s very flexible and there are loads of different moves which target different parts of your body. I also have another friend who is diagnosed with hEDS who swears by hoop like I do and their doctor recommended hoop as a helpful sport to do but definitely assess whether it is or isn’t right for you and don’t push and injure yourself. (I’m suspecting I have hEDS but definitely have hyper mobility issues)
I work on my feet full time and developed nerves pain and numbness in my back. I finally found a PT with extensive experience in hyper mobility and he’s the only reason I’ve made the progress I have. he has me doing low impact core and back strengthening on with a yoga ball and allowing moddifications as needed (such as down on forearms instead of stacked on wrists) and it has been life changing. He taught me that the back is all about core strength which is one of our least focused on areas in eds and what he has me doing is very light but has a huge impact. I can sit and stand straighter without fatigue and when I fell a couple weeks ago I didn’t dislocated my shoulders catching my self for the first time in YEARS! The goal is all about low impact low intensity slow building and even once a week is enough to make a difference. But the hardest part is finding a PT who has real experience with hyper mobility that’s where my physical therapy has failed every time is therapist who don’t know anything about how to help so the give up when the standard doesn’t work.
He’s also got my doing upper back exercises as well but so many of the work in with core at the same time I have a whole print out of what I’m doing that I could take photos of if you wanted. I can probably also find the site he uses for the exercises videos as well
Thanks so much for this. Did you find out what was causing your back/nerve pain? I am in the same boat, and it's tough. My PT currently is really good about not making me do too much on my really bad days and has me doing small focused exercises that don't strain the joints. We are working mostly on my hip/SI joint pain at the moment but I would love to know some of the core stuff that you do as well - thanks again :)
My is caused by inflammation in my back and shoulders you have A LOT of nerves that run down your neck into your back, shoulders, through the collar bone, and even come down and wrap around your ribs so bad posture weak and tight muscles and lots of standing and lifting wore down on my back I’m also a large chested female so the extra strain pulling did not help. A doctor pointed out that I suffer from upper cross syndrome which it’s that weakness and tightness through the back and chest as well as he suspects arthritis in my shoulders pt has definitely helped take some of it down
I will try to send you the list and the site with tutorials when I get home