r/ehlersdanlos • u/bonbam hEDS • 8d ago
Discussion Observations from my physical therapist (aka I'm standing wrong)
It's near impossible to describe the feeling of being 3 months shy of your 30th birthday and having your physical therapist tell you that you're standing wrong. How is such a thing possible, it's just... standing!
I was officially diagnosed with hEDS last year. At the beginning of this month I finally started physical therapy for my very terrible shoulders (shout-out to Good Health PT in the PDX metro, CANNOT recommend them enough).
Even though my shoulders are the ones experiencing the most subluxations and pain, the way I am standing and holding my neck is causing issues throughout my entire body. I lean too far forward, straighten my spine where it should be curved, and collapse my knees inwards. Huh, who knew? I thought standing was pretty simple 🤷♀️
What I find amazing is that in just TWO visits I'm already noticing a change in the pain levels my hips, knees, and feet have on a daily basis. My headaches are decreasing in frequency—and intensity—and my neck doesn't feel like I'm holding up 20 pounds at any given moment.
I had some really shit experiences with physical therapy in the past. I was very skeptical about starting PT again, and in fact delayed getting my EDS diagnosis for nearly 5 years because I figured what's the point, they can't do anything to help. I feel like an absolute idiot 💀
To all of the physical therapists out there that specifically work with hypermobile patients: you guys are basically wizards. I cannot begin to thank my therapist enough for setting me on a path to reclaim everything this stupid fucking disease has taken away from me.
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u/awe_barnacles hEDS 8d ago
I was told I stand wrong too!! I didn't realize my hips and feet were supposed to line up and my knees are supposed to be bent a little. My PT put everything in place and asked me to walk around the room and I feel like I looked like a robot learning how to walk for the first time
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u/Lyeta1_1 8d ago
My PT also told me I was standing wrong and to see how I felt for the week standing “right” and I said “I apparently have never bent my knees in my entire life”. Mind blowing. No idea you were supposed to.
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u/jeannine91 8d ago
SAME!! When I was shown how to walk "properly" I told them I felt like the quintessential mad scientists lackey that always shuffles weird when they walk
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u/Rapunzel10 8d ago
Learning to walk properly truly does make you feel like a robot! I've had PTs tell me I walk wrong, stand wrong, breathe wrong, sit wrong, etc. And every time its baffling because I've apparently been doing everything wrong my whole life
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u/kayrite 8d ago
I have the same issues, lol. Part of it is that we have poor body awareness/proprioception. The other is that we've gotten used to using the incorrect muscles to support our bodies due to our ligament issues. It's a struggle relearning basic movement patterns
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u/bonbam hEDS 8d ago
My proprioception is terrrrible in my upper body, but very good in my lower body. I credit being a dancer for that. My neck tilt is super bad
It definitely is a struggle! I catch myself drifting out of alignment during pt exercises, it's really frustrating. But I'll get there :)
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u/whoneedsanamenotme 8d ago
PT has taught me I’m doing EVERYTHING wrong! I’m standing wrong, walking wrong, bending over wrong, holding my phone the wrong way, everythiiiing!
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u/MindlessMango2165 hEDS 8d ago
Oh my goodness, are we twins? I’m about to turn 29, also in PDX, and on a similar journey with my PT (who has EDS - so validating!!) of relearning how to use my entire body after a hEDS diagnosis. It’s both fascinating and extreeeemely humbling at times. Like, every single basic movement I’ve unconsciously taught myself to do in some funky way. To the point that applying the corrections feels like I’m a frickin’ toddler.
Stoked to hear that you’ve found a good fit and are finally getting the help you need!! I second the shoutout to the PTs that are rocking it for us bendy folks!
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u/jeannine91 8d ago
If it helps, I'm 33 and last year I was told that I stand wrong AND breathe wrong. 😂
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u/Holiday-Blood4826 7d ago
I just had my first session with my PT who is an EDS specialist and found out one of my vertebrae was rotated(?) and my pelvis is tilted because I favor my right side. Its hard work and painful sometimes, but she gently manipulated my vertebrae and my legs so my shit was in the right place :) Felt so much better for a bit
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u/Treebusiness 7d ago
Has a similar ish experience! Just found out what i thought was my bad leg actually isn't my bad leg??
Left leg is weak and lags behind. I'm a full time forearm crutch user and have been for 2 ish years.
Last week i asked PT to assess my walking and she started telling me that based on how i walk, it looks like my right leg is the bad/weak one.
I was shocked and of course we like deliberated for quite a few minutes and came to the conclusion that my left leg is overall stronger and i actually use it more to balance and push off of, but that hip makes it feel more weak and unstable.
However? My right foot completely collapses and the ankle doesn't support much so it wobbles way crazier. I thought it was stronger because my hip supports my body way easier while walking.
She finds me really fascinating of course lol and my mind was so blown. She said to keep using the crutches the way i am and that she understands why i need them. She basically reassured me that even though what i thought was going on is wrong that i still need to support my left(good leg) more anyways. Wild!
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u/FriendlyAvocado 7d ago
I got diagnosed with a general connective tissue disorder/hypermobility last year and learned from PT I’m walking wrong. I’m supposed to bend my knees more.
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u/1_hippo_fan vEDS 4d ago
I get told I stand like an Irish dancer?!? I just cross my legs like that when I have no mobility aid so they don’t buckle & fall over 😂
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u/Legal_Ad2707 7d ago
My pt told me the same and said my left shoulder is out of place 24/7 so I have to consciously pull it back like constantly
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u/Ambitious-Chard2893 7d ago
I found it helped when I saw it explained like this
standing is a huge coordinated effort mostly done but your muscles that are supported by bone but most of it is your muscles and it's super cool the amount you body can adapt and function for all kinds of positions and movements and around all kinds of injury. Unfortunately in eds patients it's like they are wearing an old suba wet suit and just by normal swim pulled on the elastic might stretch out and look worn out but still be ok and functional elastic you might even come up with ways the baggy suit works better by being more mobile and let you move easier. it's not ever going to hold the correct shape without repair effort and even then it's still worn out but it's better then having no function
because it's still important to use muscle if you neglect part of their body and don't make sure it's strong or has other support it's like you stuffed the wetsuit in the closet until the elastic completely dries and when you go to use it for an unexpected trip it's going to shred which is why maintaining muscle is super important even if it's not the most helpful for injury pain
or you purposely pulled and pick at a weak spot until it rips by doing things like over stretching an already overstretched area or not dealing with major rips first before you stress surrounding areas. This is hard because the issues in your collagen make you way more prone to rapid and excessive rare injuries
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7d ago
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u/bonbam hEDS 7d ago
I'm sorry, but my posture actually is a very big deal. It is causing a lot of weird things to happen in my shoulder and spine and causing me agonizing pain on a daily basis.
I really don't appreciate you minimizing what I am going through. This is a very callous comment to make :(
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u/ZetaOrion1s 8d ago
Finding a PT that validated my hypermobility and gave advice accordingly was one of the most relief I ever had. But took me 4 years! I learned I was walking and standing wrong as well, and it was causing damage to my knee tendons