Devon, you have to stop doing this, dropping things in my inbox that make me go "oh. of fucking course this isn't me being Uniquely Weird". I had forgotten that the signs of hypermobility I exhibit are, in fact, Signs. There's knowing something, and there's *Knowing* it, and sometimes you need the reminder that needing to lie in bed in a way that makes the Yamcha pose look comfy to sleep is fucking weird.
Still knowing it so you can take care of yourself better, no matter how confronting that might be, is the only way to go forward. I used to be quite the obsessive weightlifter (not least because I tried to get those pesky trans thoughts to go away, which uhh, didn't work), really disliking the more gentle, less heavy ways of moving myself. I recently had the privilege of going on a trip to visit some family, and while there, I out of nowhere got in the habit of just taking walks. Befuddled the hell out of me, I always *hated* walking, it felt so unpleasant. But as I realized then, it wasn't just the novelty of a different place, it was the fact these walks were on dirt or gravel paths, full of fallen, crunchy autumn leaves. Instead of hard, unyielding pavement and concrete. It's very tangential to the above, but I'd figure I'd share something that helped me.
omfg Kleo, Yamcha pose is exactly correct. That is exactly what I do in bed. (Or did, until recently. I do still revert to it sometimes). I wish I'd realized that while writing and included the .jpg. I still might.
Weightlifting is such a mixed bag for us hypermobile ppl. My friend Jessie says that the hypermobile people who get diagnosed the latest are incredibly strong, because we have compensate enough to hide a lot of the major issues and prevent injury for a time, though we often get strong in the wrong places. I'm glad I had a few years on T and lifting, but I sure wish I'd focused on the glutes, core, and lower back rather than sculpting myself into a Dorito man-shape. Pilates is frustratingly slow, but I have finally been humbled enough to see that I need it, and enjoy it. It is so silly to learn that sometimes work that is easier really is better than cranking your joints into impossible positions throwing weights around and huffing and puffing everywhere. What time I wasted.
Walking on soft surfaces is a dream. I love that springy, solid rubber material you sometimes see on playgrounds and outdoor exercise parks these days. I have some Goretex Nike running shoes that are really pleasantly springy and soft on the knees, too. But more often than note, putting braces on everything is even better.... still getting used to the idea of needing to take care of my body all the time, rather than punishing it until it breaks.
Totally, it's quite the journey getting used to it. I haven't quite gotten there yet, the little voice asking me why I'm not lifting ridiculous weights piping up from time to time, but it's not as hard anymore to ignore it and go do nothing. (To name just one particular area I really tended to overdo it, among many others.) I miss being strong as fuck, but it certainly beats being forced into doing nothing by overdoing it. Again.
The things you publish and share feel so often like they were custom-fit for my most frustrating blindspots in my own wellbeing as a queer autistic person, and I'm really grateful that you take the time and effort to synthesize and publicize your life experience, because reading your work has given me a first-time feeling in my life: that someone is ahead of me on the path, and I'm not alone. I so appreciate you and your candor and what you do. Thank you.
I was diagnosed with hypermobilty and fibromyalgia by a rheumatologist (who said that the two are "the same thing viewed through different facets of a prism" when I was 44. Since then, I've started taking it seriously it's really impacted my capacity. I work less than I have since I was pre-pubescent and do so much resting. When writing my disability claim, I requested my whole life medical record and learned that my parents took me to the doctor because my hips were dislocating when I was 18 months old. It took me the whole of my life, 5 decades, to be taken seriously when I had a hypermobile pelvis that kept slipping out of alignment and a shoulder that visibly drops out of its socket when I relax the muscles around it. I hope that by putting your experiences out into the world, more people are able to recognise their own experiences and give themselves the support they need. I believed for years that everyone's body felt the way mine does and they were all just better at coping with it than me. Talking about this stuff is so important. If just one person reading this realizes for the first time that their struggles to sit upright and their body's tendency to hurt for apparently no reason isn't a standard baseline human experience, you will have offered a huge service.
This is so wonderful to read - thank you for sharing! I’m neurocomplex, (I discovered in my forties), and was also diagnosed with hEDS around the same time. So much of what you describe resonates, right down to the Squishmallow nest I’ve made to retrain myself to sleep on my back! Great work. May your journey unfold with love.
This was insanely relatable and describes most of my journey over the past 5 years. I want to drop my biggest insights in case they help anyone else here! 🙏
The Whole Body Breathing - Integrated Unfolding (https://wholebodybreathing.com/) course has been incredible for my understanding of both my body and mind. He goes deep into tensegrity and how to "reinflate" the body so that the breath and posture are fully integrated and supportive of each other. Learning about fascia and tensegrity has been a game changer.
The Human Garage YouTube channel has also been incredible, especially if you have any injuries or misalignments. It's freaky work, but aside from an excellent craniosacral therapist/osteopath, it doesn't get better for re-aligning the body. I've heard Rolfing is excellent for that too and I'll be trying that as soon as I can afford it!
Shaking, pandiculation (exiting the startle response), and yielding have also been really interesting to learn about and really powerful techniques for relaxation. I recently learned that if you weren't held enough as a baby (with good pressure/body-to-body contact), or if you were premature, it's possible the rib cage becomes stiff from having to brace against the floor instead of being able to flexibly yield into a soft body. So doing exercises like wrapping yourself in a heavy blanket and breathing against it, or breathing and expanding into the floor fully, can help the rib cage (and diaphragm) become properly integrated and flexible.
Also, psychedelics like mushrooms, LSD, and mescaline can have massive somatic healing and integration effects—literally allowing you to remap your whole proprioception in one session. Somatic Experiencing and Psychedelic Therapy are really awesome methodologies because the mind literally is the body, as I've learned. Trauma Release Exercises (TRE) is another simple thing on YouTube that is insanely powerful; as mammals, we should be naturally tremoring/shaking to release stress but most of us have lost that ability.
I have literally been obsessed with all of this stuff for years and it's rare to be able to talk about it. Sorry for the infodump, but thank you for all of these Golden nuggets! 🙏
I got my EDS diagnosis last year and I’ve been relearning trumpet as an adult—no wonder I find the breath control aspect SO HARD. That video was life changing, thank you for sharing!
Thanks for writing this it’s very insightful and feels a lot like a glimpse into what could be my future. I got diagnosed with EDS when I was like 15 and my PE teacher one year would make everyone run multiple miles every week and my knees would hurt for months afterwards. When i sleep without any support from blanket piles and pillows, whether it’s stomach or back I can feel my knees lock and overextending backwards, and if I do not support them it will hurt to walk the next day. I daydream about getting more support
As a hypermobile person (and late diagnosed Autistic), I've always had a hard time figuring out what type of exercise works best for me because of how easily I get injured. Two years ago, I thought it would be fun to try martial arts until I did a jumping knee kick in a warmup exercise, twisted my ankle as I came down and ended up rupturing my ACL. This was 5 months into it, and I was just doing complete beginner stuff. Rupturing the ACL is an injury that mostly happens to serious sports athletes, and it happened to me on a random Tuesday doing a warmup exercise. My family has made fun of my clumsiness and wobbliness since I was little, and that made me think I was just not trying hard enough to "not be clumsy" as if it was something I could control; I mean, I had to wear orthopedic boots as a child to help fix how far my knees bended to the back but it was still somehow my fault. As I get older, I try to be gentler on my body to ensure I am not going beyond my limits, and Pilates has been great for this. As someone with a deep interest in the human body and how it works, following your hand injury journey has been fascinating. That last paragraph makes me think of the life I live now, centered in self-care and acceptance of this wobbly and sensitive meat sack I call my body. It is indeed extremely freeing. Thanks again, Devon, for sharing your story. <3
After reading this, I tried sleeping on my back last night and woke with no back pain for the first time ever and I’m just shocked Pikachu about it - thank you!
I hope I'll be able to find healthcare professionals at some point who will be willing to actually consider what I'm telling them about my body, my observations, my symptoms, and all. Hypermobility and/or EDS seem like the more plausible explanation for my chronic joints pain, although I'm far from flexible these days. Thing is I was as a kid. Big time. Limbo champion, the kid who always sprained at least a joint, sometimes more than one, every season of recreative soccer or basketball I played. I mean, I even managed to sprain my big toe in an inflatable slide, once... But since then, I'm stiff. Hyper rigid. Every physiotherapist, chiropractor and friends/partners trying to give me a massage have been surprised how tensed and stiff I was.
Recently, we started me on muscle relaxants, as it's one of the only thing helping me sleep. Cause I'm too tensed to sleep. And well, we have to find the sweet spot between helping me relax and feeling less pain...and getting me too slack and at risk of more injuries.
Cause well... I'm still dealing with weird joints injuries. Last December, I sprained my lower back while bending over to wash my feet in the shower. I had tendinitis to both of my wrists a couple years ago (the pain you mention in your thumb when playing too much Pokemon Go? It's a very frequent occurrence for me, even without playing that specific game, but just like, typing on my phone is enough). I have at least 4 upper back hernias, without any specific injuries or accident to blame them on. Both my knees are fucked, although the orthopedic who operated on them 13 years ago didn't see anything.
When we add that to my digestive parricularities (I am either intolerant to many random food, or... it's something else 🤔), my autism, my ADHD, my THPI, my sleep issues, my transness... I just hope I'll end up meeting a doctor who'll actually want to investigate for real and to find solutions.
I should clarify (just for anyone reading who doesn't know, I'm sure that you do) mobility and flexibility are different, and a lot of hypermobile people are in fact *very* rigid and inflexible because their bodies are tightening up so much to compensate for the slippery joints. This is not a rule, however -- I happen to be both flexible and hypermobile, with some random muscle tension in specific places for funsies. I am so sorry you are dealing with so much provider ignorance and dismissiveness.
What speech-to-text apps do you use? I want to use one for journalling , I used to journal a lot but I used pen and paper and these days my hand really hurts if I write for too long. I want to find one that doesn't use AI though because I'm kind of creeped out by the thought that my innermost thoughts would be going to Google or Microsoft or whoever to be processed into text!
I talked about a few that I was using in the previous hypermobility piece, but honestly they have all gotten worse this year because of AI integration...Google Keyboard sucks now even when you turn AI off. :/ I would love recommendations.
This was super interesting to read, thank you for sharing. I have one slightly hyper mobile joint (my thumbs just kind of “pop” in and out of place in the joint where they connect to the rest of my hand, always have been like that, doesn’t hurt just a little bit weird and apparently most people’s don’t) but one of my siblings has a few to the point where she looked up EDS symptoms but she doesn’t meet that criteria. I didn’t know other types of hypermobility were so prevalent. Also, I feel like so little is known about HRT in combination with hyper mobility. I know anecdotally my own wrists and forearms became more stable and stronger after I started T to an extent that kind of surprised me.
I’m glad you are learning to rest and figure out how to meet your needs and I hope this article helps other people do the same
Thank you Seth! I think in certain pockets of the internet, people fully equate hypermobility with hEDS, and in medicine people kind of just ignore both (while treating hypermobility as a legitimate but meaningless human difference, and hEDS as fake. :/). So much of our medical care is so standardized that any diversity of bodies is not accounted for, which is a damn shame. Hypermobility is so common! Then again, being plus sized is even more common, and doctors don't account for that.
I sprained my knee and ankle about ten years ago, just by walking over a dip in the pavement. No one ever looked more closely at how that might be possible. Two years ago when I finally had physio she took one look at me and diagnosed hypermobility. It’s also changed my life- all the things I’ve found so difficult and painful are actually difficult and painful for my poor body, I’m not just being dramatic and feeble.
I’ve been lucky enough to find a trainer who is also hypermobile and neurodivergent and it’s been absolutely life changing. Like you I thought it was really cool that I was so bendy, I felt so proud in yoga classes, but now I have a much better understanding of why it was that I could bend so far and also be so weak.
Something I’ve started to look into is fibromyalgia. I’ve always had really strong inflammatory responses in my body at times of stress, and now my joints get inflamed whenever my mental health is under pressure. It has really reframed my self care. Therapy supports my body and training supports my mind, and I have to put so much work into just getting by. But I’m so glad I know these things now, and that I’m finally able to take care of myself properly.
I would not be surprised if some years down the line we discover that a lot of what gets written off by doctors as psychologically-driven fibromyalgia is in fact a combination of hypermobility, EDS, neurodivergence, trauma, and inflammatory activation caused by the constellation of those things. (Of course, fibro would still be just as real and in need of better interventions were it to prove completely psychological in origins, but then again the body can never be so cleanly divided!). I have been observing flare-ups in my hypermobile joints feeling "tweaked" that I cannot always predict; a hard work day of writing predicts wrist strain, sure, but why are my knees hurting today when they didn't hurt after another weekend of walking just as much as I did this weekend? It sure seems to me that stress exacerbated my Hand Saga last year. I will have to keep noticing how things fluctuate. I wonder if my hormone cycle (now that I menstruate again) is in the mix at all too.
The more I learn, the more arbitrary a lot of these diagnoses seem to be. I meet a lot of criteria for a lot of ‘disorders’ and I suspect a lot of the time your diagnosis depends on what doctor you see at a particular time, along with socio-economic factors such as race, gender and class. It feels like people just draw a circle around a lot of ‘symptoms’ and give it a name, but there’s so much overlap between things that you can’t test for.
In my anecdotal experience, autism increases your chance of experiencing trauma, trauma leads to inflammation, inflammation leads to many different issues in your body. But not once have I had a conversation with a GP that has come anywhere close to discussing that. It’s just been ‘well it’s probably psychological so we will refer you for a bit of CBT.
The timeliness of my reading this is perfect! I'm neurodiverse (on the spectrum), long-time flexible yogini; I sustained a tibial plateau fracture of the left leg 3.5+ years ago and since then, due to being immobilized and ignorant of the importance of strength-training, I presently am dealing with left shoulder-arm-hand issues that progress down the left side of the body. I think it's sticky fascia!
May I recommend the book "On Muscle" by Bonnie Tsui -- so much good information on how the muscle can be friend or enemy depending upon how we treat it (feed it) and make it work. Good luck and persist!
Thank you for this message Gwen! That book sounds fascinating. I hope that you are able to get supportive care & competent PT to get you through the upper body pain.
This in its self, was a supportive read. I may be in the midst of your hand experience, but instead it's my jaw that's sounding the alarm after wisdom teeth extraction. A number of my joints sublax and a saddle chair has recently replaced the generic desk chair. Thanks for the alert and reminder to accept and work with, not against my body
We constantly need that reminder to accept the body and our needs as they are!!! So sorry to hear about your jaw. I had my wisdom teeth out this year too, and the lead-up was so agonizing, how horrible that surgery brought you pain rather than relief. A saddle chair sounds satisfying...!
Devon, you have to stop doing this, dropping things in my inbox that make me go "oh. of fucking course this isn't me being Uniquely Weird". I had forgotten that the signs of hypermobility I exhibit are, in fact, Signs. There's knowing something, and there's *Knowing* it, and sometimes you need the reminder that needing to lie in bed in a way that makes the Yamcha pose look comfy to sleep is fucking weird.
Still knowing it so you can take care of yourself better, no matter how confronting that might be, is the only way to go forward. I used to be quite the obsessive weightlifter (not least because I tried to get those pesky trans thoughts to go away, which uhh, didn't work), really disliking the more gentle, less heavy ways of moving myself. I recently had the privilege of going on a trip to visit some family, and while there, I out of nowhere got in the habit of just taking walks. Befuddled the hell out of me, I always *hated* walking, it felt so unpleasant. But as I realized then, it wasn't just the novelty of a different place, it was the fact these walks were on dirt or gravel paths, full of fallen, crunchy autumn leaves. Instead of hard, unyielding pavement and concrete. It's very tangential to the above, but I'd figure I'd share something that helped me.
omfg Kleo, Yamcha pose is exactly correct. That is exactly what I do in bed. (Or did, until recently. I do still revert to it sometimes). I wish I'd realized that while writing and included the .jpg. I still might.
Weightlifting is such a mixed bag for us hypermobile ppl. My friend Jessie says that the hypermobile people who get diagnosed the latest are incredibly strong, because we have compensate enough to hide a lot of the major issues and prevent injury for a time, though we often get strong in the wrong places. I'm glad I had a few years on T and lifting, but I sure wish I'd focused on the glutes, core, and lower back rather than sculpting myself into a Dorito man-shape. Pilates is frustratingly slow, but I have finally been humbled enough to see that I need it, and enjoy it. It is so silly to learn that sometimes work that is easier really is better than cranking your joints into impossible positions throwing weights around and huffing and puffing everywhere. What time I wasted.
Walking on soft surfaces is a dream. I love that springy, solid rubber material you sometimes see on playgrounds and outdoor exercise parks these days. I have some Goretex Nike running shoes that are really pleasantly springy and soft on the knees, too. But more often than note, putting braces on everything is even better.... still getting used to the idea of needing to take care of my body all the time, rather than punishing it until it breaks.
Totally, it's quite the journey getting used to it. I haven't quite gotten there yet, the little voice asking me why I'm not lifting ridiculous weights piping up from time to time, but it's not as hard anymore to ignore it and go do nothing. (To name just one particular area I really tended to overdo it, among many others.) I miss being strong as fuck, but it certainly beats being forced into doing nothing by overdoing it. Again.
I sleep in Yamcha pose too!
The things you publish and share feel so often like they were custom-fit for my most frustrating blindspots in my own wellbeing as a queer autistic person, and I'm really grateful that you take the time and effort to synthesize and publicize your life experience, because reading your work has given me a first-time feeling in my life: that someone is ahead of me on the path, and I'm not alone. I so appreciate you and your candor and what you do. Thank you.
I was diagnosed with hypermobilty and fibromyalgia by a rheumatologist (who said that the two are "the same thing viewed through different facets of a prism" when I was 44. Since then, I've started taking it seriously it's really impacted my capacity. I work less than I have since I was pre-pubescent and do so much resting. When writing my disability claim, I requested my whole life medical record and learned that my parents took me to the doctor because my hips were dislocating when I was 18 months old. It took me the whole of my life, 5 decades, to be taken seriously when I had a hypermobile pelvis that kept slipping out of alignment and a shoulder that visibly drops out of its socket when I relax the muscles around it. I hope that by putting your experiences out into the world, more people are able to recognise their own experiences and give themselves the support they need. I believed for years that everyone's body felt the way mine does and they were all just better at coping with it than me. Talking about this stuff is so important. If just one person reading this realizes for the first time that their struggles to sit upright and their body's tendency to hurt for apparently no reason isn't a standard baseline human experience, you will have offered a huge service.
This is so wonderful to read - thank you for sharing! I’m neurocomplex, (I discovered in my forties), and was also diagnosed with hEDS around the same time. So much of what you describe resonates, right down to the Squishmallow nest I’ve made to retrain myself to sleep on my back! Great work. May your journey unfold with love.
Thank you so much Tara!
This was insanely relatable and describes most of my journey over the past 5 years. I want to drop my biggest insights in case they help anyone else here! 🙏
The Whole Body Breathing - Integrated Unfolding (https://wholebodybreathing.com/) course has been incredible for my understanding of both my body and mind. He goes deep into tensegrity and how to "reinflate" the body so that the breath and posture are fully integrated and supportive of each other. Learning about fascia and tensegrity has been a game changer.
The Human Garage YouTube channel has also been incredible, especially if you have any injuries or misalignments. It's freaky work, but aside from an excellent craniosacral therapist/osteopath, it doesn't get better for re-aligning the body. I've heard Rolfing is excellent for that too and I'll be trying that as soon as I can afford it!
Shaking, pandiculation (exiting the startle response), and yielding have also been really interesting to learn about and really powerful techniques for relaxation. I recently learned that if you weren't held enough as a baby (with good pressure/body-to-body contact), or if you were premature, it's possible the rib cage becomes stiff from having to brace against the floor instead of being able to flexibly yield into a soft body. So doing exercises like wrapping yourself in a heavy blanket and breathing against it, or breathing and expanding into the floor fully, can help the rib cage (and diaphragm) become properly integrated and flexible.
Also, psychedelics like mushrooms, LSD, and mescaline can have massive somatic healing and integration effects—literally allowing you to remap your whole proprioception in one session. Somatic Experiencing and Psychedelic Therapy are really awesome methodologies because the mind literally is the body, as I've learned. Trauma Release Exercises (TRE) is another simple thing on YouTube that is insanely powerful; as mammals, we should be naturally tremoring/shaking to release stress but most of us have lost that ability.
I have literally been obsessed with all of this stuff for years and it's rare to be able to talk about it. Sorry for the infodump, but thank you for all of these Golden nuggets! 🙏
I definitely hear a few things in here that I definitely should try. Thank you!
I got my EDS diagnosis last year and I’ve been relearning trumpet as an adult—no wonder I find the breath control aspect SO HARD. That video was life changing, thank you for sharing!
Thanks for writing this it’s very insightful and feels a lot like a glimpse into what could be my future. I got diagnosed with EDS when I was like 15 and my PE teacher one year would make everyone run multiple miles every week and my knees would hurt for months afterwards. When i sleep without any support from blanket piles and pillows, whether it’s stomach or back I can feel my knees lock and overextending backwards, and if I do not support them it will hurt to walk the next day. I daydream about getting more support
As a hypermobile person (and late diagnosed Autistic), I've always had a hard time figuring out what type of exercise works best for me because of how easily I get injured. Two years ago, I thought it would be fun to try martial arts until I did a jumping knee kick in a warmup exercise, twisted my ankle as I came down and ended up rupturing my ACL. This was 5 months into it, and I was just doing complete beginner stuff. Rupturing the ACL is an injury that mostly happens to serious sports athletes, and it happened to me on a random Tuesday doing a warmup exercise. My family has made fun of my clumsiness and wobbliness since I was little, and that made me think I was just not trying hard enough to "not be clumsy" as if it was something I could control; I mean, I had to wear orthopedic boots as a child to help fix how far my knees bended to the back but it was still somehow my fault. As I get older, I try to be gentler on my body to ensure I am not going beyond my limits, and Pilates has been great for this. As someone with a deep interest in the human body and how it works, following your hand injury journey has been fascinating. That last paragraph makes me think of the life I live now, centered in self-care and acceptance of this wobbly and sensitive meat sack I call my body. It is indeed extremely freeing. Thanks again, Devon, for sharing your story. <3
After reading this, I tried sleeping on my back last night and woke with no back pain for the first time ever and I’m just shocked Pikachu about it - thank you!
I hope I'll be able to find healthcare professionals at some point who will be willing to actually consider what I'm telling them about my body, my observations, my symptoms, and all. Hypermobility and/or EDS seem like the more plausible explanation for my chronic joints pain, although I'm far from flexible these days. Thing is I was as a kid. Big time. Limbo champion, the kid who always sprained at least a joint, sometimes more than one, every season of recreative soccer or basketball I played. I mean, I even managed to sprain my big toe in an inflatable slide, once... But since then, I'm stiff. Hyper rigid. Every physiotherapist, chiropractor and friends/partners trying to give me a massage have been surprised how tensed and stiff I was.
Recently, we started me on muscle relaxants, as it's one of the only thing helping me sleep. Cause I'm too tensed to sleep. And well, we have to find the sweet spot between helping me relax and feeling less pain...and getting me too slack and at risk of more injuries.
Cause well... I'm still dealing with weird joints injuries. Last December, I sprained my lower back while bending over to wash my feet in the shower. I had tendinitis to both of my wrists a couple years ago (the pain you mention in your thumb when playing too much Pokemon Go? It's a very frequent occurrence for me, even without playing that specific game, but just like, typing on my phone is enough). I have at least 4 upper back hernias, without any specific injuries or accident to blame them on. Both my knees are fucked, although the orthopedic who operated on them 13 years ago didn't see anything.
When we add that to my digestive parricularities (I am either intolerant to many random food, or... it's something else 🤔), my autism, my ADHD, my THPI, my sleep issues, my transness... I just hope I'll end up meeting a doctor who'll actually want to investigate for real and to find solutions.
I should clarify (just for anyone reading who doesn't know, I'm sure that you do) mobility and flexibility are different, and a lot of hypermobile people are in fact *very* rigid and inflexible because their bodies are tightening up so much to compensate for the slippery joints. This is not a rule, however -- I happen to be both flexible and hypermobile, with some random muscle tension in specific places for funsies. I am so sorry you are dealing with so much provider ignorance and dismissiveness.
Hypermobile me (too) <3
What speech-to-text apps do you use? I want to use one for journalling , I used to journal a lot but I used pen and paper and these days my hand really hurts if I write for too long. I want to find one that doesn't use AI though because I'm kind of creeped out by the thought that my innermost thoughts would be going to Google or Microsoft or whoever to be processed into text!
I talked about a few that I was using in the previous hypermobility piece, but honestly they have all gotten worse this year because of AI integration...Google Keyboard sucks now even when you turn AI off. :/ I would love recommendations.
This was super interesting to read, thank you for sharing. I have one slightly hyper mobile joint (my thumbs just kind of “pop” in and out of place in the joint where they connect to the rest of my hand, always have been like that, doesn’t hurt just a little bit weird and apparently most people’s don’t) but one of my siblings has a few to the point where she looked up EDS symptoms but she doesn’t meet that criteria. I didn’t know other types of hypermobility were so prevalent. Also, I feel like so little is known about HRT in combination with hyper mobility. I know anecdotally my own wrists and forearms became more stable and stronger after I started T to an extent that kind of surprised me.
I’m glad you are learning to rest and figure out how to meet your needs and I hope this article helps other people do the same
Thank you Seth! I think in certain pockets of the internet, people fully equate hypermobility with hEDS, and in medicine people kind of just ignore both (while treating hypermobility as a legitimate but meaningless human difference, and hEDS as fake. :/). So much of our medical care is so standardized that any diversity of bodies is not accounted for, which is a damn shame. Hypermobility is so common! Then again, being plus sized is even more common, and doctors don't account for that.
I sprained my knee and ankle about ten years ago, just by walking over a dip in the pavement. No one ever looked more closely at how that might be possible. Two years ago when I finally had physio she took one look at me and diagnosed hypermobility. It’s also changed my life- all the things I’ve found so difficult and painful are actually difficult and painful for my poor body, I’m not just being dramatic and feeble.
I’ve been lucky enough to find a trainer who is also hypermobile and neurodivergent and it’s been absolutely life changing. Like you I thought it was really cool that I was so bendy, I felt so proud in yoga classes, but now I have a much better understanding of why it was that I could bend so far and also be so weak.
Something I’ve started to look into is fibromyalgia. I’ve always had really strong inflammatory responses in my body at times of stress, and now my joints get inflamed whenever my mental health is under pressure. It has really reframed my self care. Therapy supports my body and training supports my mind, and I have to put so much work into just getting by. But I’m so glad I know these things now, and that I’m finally able to take care of myself properly.
I would not be surprised if some years down the line we discover that a lot of what gets written off by doctors as psychologically-driven fibromyalgia is in fact a combination of hypermobility, EDS, neurodivergence, trauma, and inflammatory activation caused by the constellation of those things. (Of course, fibro would still be just as real and in need of better interventions were it to prove completely psychological in origins, but then again the body can never be so cleanly divided!). I have been observing flare-ups in my hypermobile joints feeling "tweaked" that I cannot always predict; a hard work day of writing predicts wrist strain, sure, but why are my knees hurting today when they didn't hurt after another weekend of walking just as much as I did this weekend? It sure seems to me that stress exacerbated my Hand Saga last year. I will have to keep noticing how things fluctuate. I wonder if my hormone cycle (now that I menstruate again) is in the mix at all too.
The more I learn, the more arbitrary a lot of these diagnoses seem to be. I meet a lot of criteria for a lot of ‘disorders’ and I suspect a lot of the time your diagnosis depends on what doctor you see at a particular time, along with socio-economic factors such as race, gender and class. It feels like people just draw a circle around a lot of ‘symptoms’ and give it a name, but there’s so much overlap between things that you can’t test for.
In my anecdotal experience, autism increases your chance of experiencing trauma, trauma leads to inflammation, inflammation leads to many different issues in your body. But not once have I had a conversation with a GP that has come anywhere close to discussing that. It’s just been ‘well it’s probably psychological so we will refer you for a bit of CBT.
The timeliness of my reading this is perfect! I'm neurodiverse (on the spectrum), long-time flexible yogini; I sustained a tibial plateau fracture of the left leg 3.5+ years ago and since then, due to being immobilized and ignorant of the importance of strength-training, I presently am dealing with left shoulder-arm-hand issues that progress down the left side of the body. I think it's sticky fascia!
May I recommend the book "On Muscle" by Bonnie Tsui -- so much good information on how the muscle can be friend or enemy depending upon how we treat it (feed it) and make it work. Good luck and persist!
Thank you for this message Gwen! That book sounds fascinating. I hope that you are able to get supportive care & competent PT to get you through the upper body pain.
Thanks for responding, Devon. I encourage you to check out chapter 13 of "On Muscle" if nothing else. The muscle is a miraculous tissue!
This in its self, was a supportive read. I may be in the midst of your hand experience, but instead it's my jaw that's sounding the alarm after wisdom teeth extraction. A number of my joints sublax and a saddle chair has recently replaced the generic desk chair. Thanks for the alert and reminder to accept and work with, not against my body
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We constantly need that reminder to accept the body and our needs as they are!!! So sorry to hear about your jaw. I had my wisdom teeth out this year too, and the lead-up was so agonizing, how horrible that surgery brought you pain rather than relief. A saddle chair sounds satisfying...!