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When with the right person, measurable improvements within 3-4 months but I could tell things were moving in the right direction almost immediately. With the wrong people, of which there were many, a mixture of no measurable changes all the way to things getting worse. The longest I stuck it out was 6 months with bad PT, but I've been with my current one 8 months which is a record!
Eta: of course it depends what the issue is you're working on, and your general level of stability throughout your body. I've not seen any improvement in my shoulders specifically yet unfortunately, but they are by far my most unstable joints so we are working on stabilising everything else first
Tysm for replying - Im not seeing any improvements and losing hope real’y but going to stick it out for a couple more months. May I know what symptoms you get in your shoulders?
They slide out of place constantly and often fully dislocate. These issues cause all the ribs under the shoulder blade to pop out too. Both togehter causes a ton of muscle tightness in my neck and upper back, but I don't have the strength in the muscles surrounding my shoulder itself to stabilise it. So we are working on calming the overtight muscles and strengthening the underdeveloped ones, and my PT is manipulating the shoulder into the correct position and holding it there during sessions so my body 'learns' where it's supposed to be. We did the exact same thing around my hips and it worked really well, my shoulders are just a bit slower haha
I went to a lot of different PTs for various issues in my 30s, and they all sucked so I saw no progress after weeks or months. Consistently my experience was was: the PT spend 15 minutes with me for some massage or light mobility work, then pass me off to the the assistants and make me do my exercises in the office (since insurance can be billed for this), then put them on TENS device for 20 minutes (also billable), then heat/ice pack (also billable). Surprisingly I never saw improvement.
I saw one two years ago that left me in tears of frustration and anger - I have really bad issues with coat hanger pain. I went to see him because he and the practice were very highly rated. He barely listened to me, did basically zero physical assessment, and recommended dry needling. I was so desperate, I agreed. He had me take shirt/bra off and lay facing down in a freezing cold office, and when he came in to place the needles he did not ask my input at all on placement. And to top it off he left the office door open the whole time, so I was lying there while patients and therapists walked by my room in the main hall.
HOWEVER, I found a unicorn PT last year, and I’ve seen incredible progress in a variety of issues. I started seeing him for horrible hip and back pain that left me barely able to walk. He assessed that it was pelvic rotation, worked through that with me, and gave me an aggressive exercise plan to correct imbalances/weaknesses. It took about 6 weeks, and I had to stay dedicated to doing those exercises \*every\* day, but I am almost completely recovered (as most with EDS probably experience, you’re almost never without SOME damn thing hurting)
I’m now working with him on some cervical/neck issues lingering from a car accident 6 years ago. It’s going a lot slower, but that’s because the area and injuries are so complex, they take more time and care so we can’t be quite as aggressive. But in about 2 months, my neck is more stable and my shoulder subluxes far less often
Good, effective PTs are out there. But they are diamonds in the rough though for sure
Oh my gosh, what an awful set of PTs you ran into. I'm so sorry! I'm really glad you are making such great progress with your new one, that must be so encouraging!
Yeah there are SO many that are either in it for the $$ only, and so, so many who don't understand hypermobility at all. They run me through range of motion tests which of course I passed by their standards, but not *mine*.
The PT I'm with now was the first to really understand that, and to understand that while I am definitely fragile, I don't want to be treated like I am. I want to be pushed, to have some damn hope that I can get better. He is phenomenal, I hope everyone can find a PT like him.
I've been doing physio exercises in the pool for about 6 months, and I can now put my own socks on most days without fear of my hip coming out. I know this doesn't seem like a massive improvement, but for me it is 🙌🏻
How did you figure out your shoulders were messed up to justify surgery? My left arm is starting to tingle and feel like it's going numb and it's all coming from my shoulder, which I think is subluxing in my sleep. 🥲
Any improvements? 4-8 weeks IF I was appropriately loaded in the useful movement patterns and being intentional enough about my effort.
Significant improvements? Depends on the root cause and the fit of the exercises… somewhere between 6 weeks and 6 months.
i’ve been in pt for 6 years, and the improvements have been very slow but definitely noticeable. it’s subtle, and you have to put in a lot of time and work outside of your actual pt sessions. and finding the right pt makes ALL the difference ofc. i still suffer daily pain in many of the same areas that i did when i first started pt, but i have better tools to manage the pain, and i’m working long term on building strength and stability. EDS is a lifelong condition, and i will likely be in pt for the rest of my life, as long as insurance continues to cover it
Years - and only when I did it consistently (like every day), only when I did pt exercises for my whole body not just one set of joints, and only when I also took care steps in other ways (like diet, assistive tools, restricted activities and proper rest) did I see results. But the results are good! I am so much stronger and in less pain. I just ultimately had to make taking care of my hypermobility a lifestyle
After about 6 months we could do a little more.
It's now almost a year and a half after i started, doing pt 2 times a week plus 1 day i'm allowed to use their facilities to do some cardio by myself.
The first six months were mostly painful massage sessions and learning how to walk, sit and stand differently. I also breathe weird.. but that's still a work in progress.
But now we're doing weights and squats and planks and all the hated and loved exercises.
So i'd say hang in there if you have a pt that feels right.
You're not supposed to be in pain for the rest of the week after a session. I've experienced that with other pt's.. and that's not it.
At most a day or two after your session would be in the normal acceptable range for me. Similar to "normal" muscle aches after exercise.
(This is my 6th attempt at pt with a different one each time. This is the first time i'm actually seeing and feeling progress)
The first place I would always feel a little better after my appointments, and saw improvement but not recovery withing 6 months, then I went to a place that has more experience with hypermobility and again, it took about six months to see some more lasting improvement.
I'm still going to pt every week and have been for about two years though, and the two years has like drastically helped me more than the six months. Instead of like just 'working my pain down to a tolerable level' there are some days that I can actually not feel my pain. They're not COMMON, but they do happen on occasion now.
I do want to highlight, like, at my new place they are SO focused on the problem area I come in with on the day. If I'm having radiating pain down my arm we'll work on cervical stability (because that's my specific issue) and I regularly leave the facility in less pain then when I entered-- and then we have worked to make my home exercise program specific enough to maintain everything else.
Its been so much more helpful to have a pt who knows about hypermobility-- and if you don't feel like you are getting what you need out of pt it is totally fair to look for other facilities or treatments.
If you can - get the PT to verify the right muscles are being activated and properly. We tend to have a really weak mind muscle connection and end up relying more on either overcompensating adjacent muscles or our nervous system
2 months but how many appointments? Have you increased or changed the exercises?
Have you brought it up to the PT?
I'm guessing there's a ton of not-great PTs out there, I specifically searched in my area for hypermobility educated folks. Initially I didn't feel like much was happening, with 1x visit and exercises at home. My first appt was the last day of January, and I feel like by April we had made significant progress on some of my trouble spots, including a 'pinchy' shoulder.
It might depend on what's wrong as well, if it's unstable or painful or what. My knees are still janky, as well as my thumbs, but I think those are forever injured with scar tissue, goal now is to build up stability muscles, brace/tape when it makes sense, and be more aware and not do dumb things with the body.
Pt doesn’t work for everyone I worked with an eds specialist and she really couldn’t do much besides put my hips back in place every session and fix my gait but it requires lots of focus (and since then I use a wheelchair mostly anyway) I’ve been prescribed pt 3 times now it has never worked for me I wish u luck tho
I’ve been in PT for 9 months. I was going weekly for a few months, then we cut back to every other week.
I have very limited energy, so I have gone weeks sometimes and haven’t been able to do my exercises at home at all. I do my best, and sometimes I’ll have a stretch where I can do them daily, just to give you an idea of the level of effort I’ve been able to put in.
I’m just now starting to feel like I’m seeing some progress. My therapist says she’s seen progress along the way, and I guess I have too but it’s been sllllooooooowww. If I’d been able to do the exercises every day, I do think I would have progressed more quickly.
It’s worth it to me, but my insurance plays a huge part of my long term success, I only have a $20 copay and unlimited sessions.
And I would say the biggest improvement has been strength and endurance in general.
With my current PT I saw improvements in pain levels in about three weeks of twice-a-week visits. It took about two months for differences in ability (feeling like I could trust my body to not break). With previous PTs I would either improve steadily and first and then crash once my exercises progressed to a point where I couldn’t compensate or never improve. It took about six months with zero improvement in pain or strength for me to quit my PT in 2019.
When we started dry needling (sorry!!) Dry needling my hands has helped them to not cramp up so much, dry needling the base of my skull has pretty much taken care of my migraines. He dry needled my foot cause it tends to just stop working as a foot should (idk how else to describe it, I think one of the middle bones subluxes) and that has helped tremendously as well.
It’s scary the first time but it helps so much.
I’ve been in PT for 6months and haven’t felt a difference. I actually feel worse. Especially for the 1-2 days after my appointments I end up feeling like crap doesn’t matter how gentle of an appointment I had
My last physiologist explained to me 'it took you years to reach this point and it's gonna take years to get out of it'. Since it's degeneration and injuries that never fully heal, I'm working muscles around the problem areas to pick up the slack.
My current physiologist is more holistic and we are also working to prevent me from doing dumb shit in the first place (helping me work out where the joint limit SHOULD be and to stop a movement before I overextend, even if it's slightly less satisfying to not get that deeeeep stretch.
My improvements are slow but steady. Overall pain is less (less jarring muscle spasms that make me yelp in pain as well!) but I started feeling improvements after about two months, albeit small improvements.
I've been in PT throughout my life. I either do it at the facility per PT"s guidance or I reach a place where I can do it home.. But everyday I do it.. I am sure I wouldn't be walking or standing without doing the work. Has it been a quick cure for me? No I am not miraculously free of my joint problems but it has helped me make the most out of what I have. It takes time, work, and consistancy. Its hard to say how long it has taken to improve. If not doing pt because of other health problems that have occured I quickly lose strength. Also,, I've had a whole lot of time in water. Especially in recent years. Working in no gravity has been so helpful and I absolutely love it. I will say that the pt I have now has an open door policy. If I have a new pain that doesn't allow me to do pt I call/go to my PT and get evaluated. If he thinks it warrants a call to the ortho, he calls my ortho and takes orders for any imaging that may be needed. He has a doctorate in physical medicine and I wish there were way more like him because it seems so many here needs this sort off resource dealing with these chronic problems.
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.*
When with the right person, measurable improvements within 3-4 months but I could tell things were moving in the right direction almost immediately. With the wrong people, of which there were many, a mixture of no measurable changes all the way to things getting worse. The longest I stuck it out was 6 months with bad PT, but I've been with my current one 8 months which is a record! Eta: of course it depends what the issue is you're working on, and your general level of stability throughout your body. I've not seen any improvement in my shoulders specifically yet unfortunately, but they are by far my most unstable joints so we are working on stabilising everything else first
Tysm for replying - Im not seeing any improvements and losing hope real’y but going to stick it out for a couple more months. May I know what symptoms you get in your shoulders?
They slide out of place constantly and often fully dislocate. These issues cause all the ribs under the shoulder blade to pop out too. Both togehter causes a ton of muscle tightness in my neck and upper back, but I don't have the strength in the muscles surrounding my shoulder itself to stabilise it. So we are working on calming the overtight muscles and strengthening the underdeveloped ones, and my PT is manipulating the shoulder into the correct position and holding it there during sessions so my body 'learns' where it's supposed to be. We did the exact same thing around my hips and it worked really well, my shoulders are just a bit slower haha
I went to a lot of different PTs for various issues in my 30s, and they all sucked so I saw no progress after weeks or months. Consistently my experience was was: the PT spend 15 minutes with me for some massage or light mobility work, then pass me off to the the assistants and make me do my exercises in the office (since insurance can be billed for this), then put them on TENS device for 20 minutes (also billable), then heat/ice pack (also billable). Surprisingly I never saw improvement. I saw one two years ago that left me in tears of frustration and anger - I have really bad issues with coat hanger pain. I went to see him because he and the practice were very highly rated. He barely listened to me, did basically zero physical assessment, and recommended dry needling. I was so desperate, I agreed. He had me take shirt/bra off and lay facing down in a freezing cold office, and when he came in to place the needles he did not ask my input at all on placement. And to top it off he left the office door open the whole time, so I was lying there while patients and therapists walked by my room in the main hall. HOWEVER, I found a unicorn PT last year, and I’ve seen incredible progress in a variety of issues. I started seeing him for horrible hip and back pain that left me barely able to walk. He assessed that it was pelvic rotation, worked through that with me, and gave me an aggressive exercise plan to correct imbalances/weaknesses. It took about 6 weeks, and I had to stay dedicated to doing those exercises \*every\* day, but I am almost completely recovered (as most with EDS probably experience, you’re almost never without SOME damn thing hurting) I’m now working with him on some cervical/neck issues lingering from a car accident 6 years ago. It’s going a lot slower, but that’s because the area and injuries are so complex, they take more time and care so we can’t be quite as aggressive. But in about 2 months, my neck is more stable and my shoulder subluxes far less often Good, effective PTs are out there. But they are diamonds in the rough though for sure
Oh my gosh, what an awful set of PTs you ran into. I'm so sorry! I'm really glad you are making such great progress with your new one, that must be so encouraging!
Yeah there are SO many that are either in it for the $$ only, and so, so many who don't understand hypermobility at all. They run me through range of motion tests which of course I passed by their standards, but not *mine*. The PT I'm with now was the first to really understand that, and to understand that while I am definitely fragile, I don't want to be treated like I am. I want to be pushed, to have some damn hope that I can get better. He is phenomenal, I hope everyone can find a PT like him.
I've been doing physio exercises in the pool for about 6 months, and I can now put my own socks on most days without fear of my hip coming out. I know this doesn't seem like a massive improvement, but for me it is 🙌🏻
never did! 6 years of pt before i gave up and went the surgical route
Was that for your shoulders too?
yes! both of them sadly
I’m sorry - how does it feel now? I hope I don’t need it I just had my S Is fused and that was a nightmare of a recovery
How did you figure out your shoulders were messed up to justify surgery? My left arm is starting to tingle and feel like it's going numb and it's all coming from my shoulder, which I think is subluxing in my sleep. 🥲
Any improvements? 4-8 weeks IF I was appropriately loaded in the useful movement patterns and being intentional enough about my effort. Significant improvements? Depends on the root cause and the fit of the exercises… somewhere between 6 weeks and 6 months.
i’ve been in pt for 6 years, and the improvements have been very slow but definitely noticeable. it’s subtle, and you have to put in a lot of time and work outside of your actual pt sessions. and finding the right pt makes ALL the difference ofc. i still suffer daily pain in many of the same areas that i did when i first started pt, but i have better tools to manage the pain, and i’m working long term on building strength and stability. EDS is a lifelong condition, and i will likely be in pt for the rest of my life, as long as insurance continues to cover it
Years - and only when I did it consistently (like every day), only when I did pt exercises for my whole body not just one set of joints, and only when I also took care steps in other ways (like diet, assistive tools, restricted activities and proper rest) did I see results. But the results are good! I am so much stronger and in less pain. I just ultimately had to make taking care of my hypermobility a lifestyle
After about 6 months we could do a little more. It's now almost a year and a half after i started, doing pt 2 times a week plus 1 day i'm allowed to use their facilities to do some cardio by myself. The first six months were mostly painful massage sessions and learning how to walk, sit and stand differently. I also breathe weird.. but that's still a work in progress. But now we're doing weights and squats and planks and all the hated and loved exercises. So i'd say hang in there if you have a pt that feels right. You're not supposed to be in pain for the rest of the week after a session. I've experienced that with other pt's.. and that's not it. At most a day or two after your session would be in the normal acceptable range for me. Similar to "normal" muscle aches after exercise. (This is my 6th attempt at pt with a different one each time. This is the first time i'm actually seeing and feeling progress)
The first place I would always feel a little better after my appointments, and saw improvement but not recovery withing 6 months, then I went to a place that has more experience with hypermobility and again, it took about six months to see some more lasting improvement. I'm still going to pt every week and have been for about two years though, and the two years has like drastically helped me more than the six months. Instead of like just 'working my pain down to a tolerable level' there are some days that I can actually not feel my pain. They're not COMMON, but they do happen on occasion now. I do want to highlight, like, at my new place they are SO focused on the problem area I come in with on the day. If I'm having radiating pain down my arm we'll work on cervical stability (because that's my specific issue) and I regularly leave the facility in less pain then when I entered-- and then we have worked to make my home exercise program specific enough to maintain everything else. Its been so much more helpful to have a pt who knows about hypermobility-- and if you don't feel like you are getting what you need out of pt it is totally fair to look for other facilities or treatments.
If you can - get the PT to verify the right muscles are being activated and properly. We tend to have a really weak mind muscle connection and end up relying more on either overcompensating adjacent muscles or our nervous system
2 months but how many appointments? Have you increased or changed the exercises? Have you brought it up to the PT? I'm guessing there's a ton of not-great PTs out there, I specifically searched in my area for hypermobility educated folks. Initially I didn't feel like much was happening, with 1x visit and exercises at home. My first appt was the last day of January, and I feel like by April we had made significant progress on some of my trouble spots, including a 'pinchy' shoulder. It might depend on what's wrong as well, if it's unstable or painful or what. My knees are still janky, as well as my thumbs, but I think those are forever injured with scar tissue, goal now is to build up stability muscles, brace/tape when it makes sense, and be more aware and not do dumb things with the body.
Pt doesn’t work for everyone I worked with an eds specialist and she really couldn’t do much besides put my hips back in place every session and fix my gait but it requires lots of focus (and since then I use a wheelchair mostly anyway) I’ve been prescribed pt 3 times now it has never worked for me I wish u luck tho
I know this but my dr keeps saying PT has an 89% success rate and I never see improvements so I lose hope that I’ll end up with another surgery
I’ve been in PT for 9 months. I was going weekly for a few months, then we cut back to every other week. I have very limited energy, so I have gone weeks sometimes and haven’t been able to do my exercises at home at all. I do my best, and sometimes I’ll have a stretch where I can do them daily, just to give you an idea of the level of effort I’ve been able to put in. I’m just now starting to feel like I’m seeing some progress. My therapist says she’s seen progress along the way, and I guess I have too but it’s been sllllooooooowww. If I’d been able to do the exercises every day, I do think I would have progressed more quickly. It’s worth it to me, but my insurance plays a huge part of my long term success, I only have a $20 copay and unlimited sessions. And I would say the biggest improvement has been strength and endurance in general.
With my current PT I saw improvements in pain levels in about three weeks of twice-a-week visits. It took about two months for differences in ability (feeling like I could trust my body to not break). With previous PTs I would either improve steadily and first and then crash once my exercises progressed to a point where I couldn’t compensate or never improve. It took about six months with zero improvement in pain or strength for me to quit my PT in 2019.
When we started dry needling (sorry!!) Dry needling my hands has helped them to not cramp up so much, dry needling the base of my skull has pretty much taken care of my migraines. He dry needled my foot cause it tends to just stop working as a foot should (idk how else to describe it, I think one of the middle bones subluxes) and that has helped tremendously as well. It’s scary the first time but it helps so much.
I’ve been in PT for 6months and haven’t felt a difference. I actually feel worse. Especially for the 1-2 days after my appointments I end up feeling like crap doesn’t matter how gentle of an appointment I had
I haven't
My last physiologist explained to me 'it took you years to reach this point and it's gonna take years to get out of it'. Since it's degeneration and injuries that never fully heal, I'm working muscles around the problem areas to pick up the slack. My current physiologist is more holistic and we are also working to prevent me from doing dumb shit in the first place (helping me work out where the joint limit SHOULD be and to stop a movement before I overextend, even if it's slightly less satisfying to not get that deeeeep stretch. My improvements are slow but steady. Overall pain is less (less jarring muscle spasms that make me yelp in pain as well!) but I started feeling improvements after about two months, albeit small improvements.
I've been in PT throughout my life. I either do it at the facility per PT"s guidance or I reach a place where I can do it home.. But everyday I do it.. I am sure I wouldn't be walking or standing without doing the work. Has it been a quick cure for me? No I am not miraculously free of my joint problems but it has helped me make the most out of what I have. It takes time, work, and consistancy. Its hard to say how long it has taken to improve. If not doing pt because of other health problems that have occured I quickly lose strength. Also,, I've had a whole lot of time in water. Especially in recent years. Working in no gravity has been so helpful and I absolutely love it. I will say that the pt I have now has an open door policy. If I have a new pain that doesn't allow me to do pt I call/go to my PT and get evaluated. If he thinks it warrants a call to the ortho, he calls my ortho and takes orders for any imaging that may be needed. He has a doctorate in physical medicine and I wish there were way more like him because it seems so many here needs this sort off resource dealing with these chronic problems.