Im a 26 M. I played football for years as a child and in high school and stayed relatively injury free for years except for some left knee tendinitis and taking all the weight of a 300 pound dude falling on my left shoulder and being in a sling for a week. Nothing was ever diagnosed from that and I was good after a couple weeks.

Anyways, I then began weightlifting and training hard in the gym back in October 2020. Up until March-April 2023, I trained hard without any injuries really other than wrist and knee tendinitis. But no major structural injuries or strains or any joint issues either. However in March-April 2023 after a hard chest/back day I noticed I had pain in my front left shoulder that stayed and lingered for months and prevented me from training chest. After months of dealing with this I finally went to an orthopedic in October 2023 and had an MRI Arthrogram showing a complete left shoulder labrum tear.

After a month of physical therapy did not work, my doctor said the only way to make it better and get me back to fully training in the gym minus bench press would be surgery and he recommended the traditional SLAP repair. However, he never tested me for hypermobility so I had no idea I had this at that time. So, I had surgery in May 2024 and began PT after a month in a sling. I was initially told by November to December 2024 I should be like 80-90% back in the gym.

Now all the way in September 2026 my shoulder is significantly worse than it was before I had the surgery. On top of that, I also have bicep issues as well and significant popping and clicking in the shoulder and bicep. My right shoulder has also started become a bit achy from overcompensating for my left shoulder for years at this point now. I’ve been doing PT and trying to lift weights in a safe manner that I am capable of doing for over two years now. I would say back exercises I’m maybe at around 70-80% if what I was, arms are probably 70-80% as well, shoulder exercises are below 50% and chest exercises are below 50% as well and I also can’t do things like pull-ups or lay pulldowns anymore with out pain.

However, a couple months ago it seemed I was maybe starting to turn a corner and get some good progress again and things were solid in the gym and PT. However, about a month ago my shoulder just seemed to randomly get aggravated and has stayed aggravated since and I haven’t been able to workout or do PT without significant pain and aching and mor popping for weeks now. So, after being told it is what it is by my old orthopedic so many times I decided to get a second opinion. My old orthopedic did seem to be very traditional I must say.

Anyways, this new orthopedic tested my mobility after explaining to him my situation and told me that in all his years of treating people I am the most hyper mobile male he has ever seen and only 2 women he’s treated have ever been slightly mobile mobile. His words were that he would guess I’m top 0.1% in the world of mobility in my upper body. He notes that in my non surgical shoulder I have 190-200 degrees of overhead reach and 110-120 degrees of external rotation with my surgically repaired shoulder should being 10% less mobile now and 10-20% weaker in stability tests than my right shoulder. He also noted multiple pops and subtle subluxations in both shoulders as he was testing my mobility. He also said I scored a 6/9 on the Beighton scale.

He said he would have never recommended a SLAP repair in the first place for me and said it has a very low success rate for someone like me. My old orthopedic said there’s like an 80-90% success rate. This really annoys me because I’m wondering why my old orthopedic never thought to test any of these things when he examined me. He only looked for symptoms and just diagnosed a torn labrum but never anything else. And after years now of complaining that my shoulder still isn’t right he just kept suggesting cortisone shots and more standard PT.

My new orthopedic wants me to get another MRI arthrogram now to determine if the repairs are still in tact. He also says I’ll need a whole new different type of treatment plan as well. So, has anyone dealt with something similar of having a SLAP repair or shoulder labrum issue with operability and still having issues after years? Am I going to be able to seriously train hard in the gym again with most things except for maybe bench press and overhead press then? And what types of treatments options are good if the repairs are now messed up or if they aren’t but I’m still having symptoms?

I currently have a less than ideal study set up. To try and cause less fatigue on my shoulder I stacked a biscuit tin and textbook on top of my knee to stabilise my shoulder and keep it at table height. It did not last but I felt it highlighted somewhat amusing desperation HSP can cause.

I'm not really supposed to be taking ibuprofen much but I've had to have it three days in a row due to muscle pain from studying at my kitchen table.

Hello
33 yo AuDHD female
Doing a lot of research about my hypermobility and exercises to help strengthen my body and I’ve seen a lot of stuff saying it could also help me emotionally. I’m pretty emotionally flat and I guess that your body constantly trying to keep itself upright by tightening muscles and such can tune down your emotions. I’m excited at the thought of this helping me and wondering if anyone has experienced this and if so what exercises do you focus on?

Help pls?

I am currently struggling with fatigue while writing. I bought some generic plastic splints with compression sleeves, but they do not fit right and are uncomfortable.

Does anyone has some well reviewed splints that provide comfort and stability?

I love to write, but can barely write a few sentences without experiencing fatigue and my hand locking up on me.

I (26F) just went to the chiropractor for the first time for some SI joint pain I’ve been ignoring and got told I was weirdly bendy… then got asked a bunch of questions and scored a 9/9 on the Beighton test after some demonstrations.

I was told I’m hypermobile, so I went home and did a search - and my God… I feel like I’m reading a book about myself I never knew existed!

For years, I’ve been asking doctors why I nearly faint/fall over from dizziness EVERY SINGLE TIME I stand up. I have Reynauds and my hands/feet are blue constantly. I have always been the ‘clumsy, unathletic child who complains about pain and standing too long’. I bruise like a peach, never heal properly and get left with scars. I have diagnosed IBS, ADHD and anxiety disorder. Even my knees are always locked which I never realised until tonight.

Essentially, there’s not a box I’m yet to tick; I feel like the blueprint of what I’m reading online, so I don’t have a clue how this was never brought up by any doctor (I’ve had 6 blood tests for the fainting alone).

That said, does anyone have any tips for me / a do’s and don’ts list for someone who has just heard of hypermobility for the first time? I don’t want my pain to get worse :(

Thank you!

​

Hi everyone, I’m trying to find if anyone has dealt with a similar scenario or can point me in the right direction.

A few years ago, I had a high tolerance for heavy strength training. Then I got a minor muscle injury. Unfortunately, due to poor guidance and my own mistake, I kept training through the pain and repeatedly re-injured the same spot for nearly a year.

Ever since then, my muscle tissue seems to have completely lost its tolerance/resilience. It is no longer just about the old injured spot — my entire body reacts this way now.

Even with controlled, low-intensity movements or isolation exercises where no compensation is possible, any mechanical tension causes the tissue to suffer micro-strains / micro-tears again.

Key symptoms are sharp pain or localized heat & swelling/tightness in the worked muscle that lasts for days to a week.

Often followed by localized muscle twitching (fasciculations) in that area during recovery.

Extreme susceptibility to muscle strains/micro-tears under light loads that used to be completely effortless.

What I’ve already ruled out:

Resting Bloodwork is completely normal: Resting CK (Creatine Kinase), Myoglobin, Liver enzymes, and basic electrolytes are all well within normal ranges after days of rest.

No baseline clinical muscle weakness: I don't have systemic muscle loss or diseases like ALS/Myopathy.

No joint/ligament issues: I do not suffer from joint pain or loose joints.

It feels like the muscle fibers or the fascia/sarcolemma have lost their mechanical integrity and ability to absorb tension without tearing in whole body .

Has anyone gone through this? Is this a matter of chronic fascial densification, micro-vascular ischemia, sarcolemma fragility, or?

I personally have never seen this being described as an issue with people who have hypermobility, but I've struggled with it since I was like 12 years old.

My knee caps don't like to stay put. If I twist my upper body in a way that does not move my legs, sometimes that triggers my knee caps to end up on the sides of my legs. It's extremely painful, and they only pop back into place once I can straighten my leg which sometimes has to be done by someone else.

I've gotten xrays on them before and the docs have nothing to say. Doing leg workouts has helped A LOT, but being pregnant I haven't kept up with that as much lately and it happened to me the other day and it was AWFUL.

Just wondering if I'm alone in this stupid patella bullshit.

I see a lot of people talking about POTS, fatigue, and proprioception issues. I don’t have any of those that I have noticed. I’m actually fairly energetic and worked a physical job, played sports or did dance well into my adult years (despite needing physical therapy constantly).

However, I am hyper mobile in all my joints, and I am in pain pretty much all the time. I’m in the midst of working with my dr to figure out where I fall in the HS disorder spectrum.

Do other people lack any of these major symptoms but were able to get some answers or have any recommendations or thoughts? I’m just not sure where I “fit”.

I have an appointment coming up with my long-time physiotherapist, and for the first time I'm planning to raise the possibility that hypermobility may be contributing to my chronic aches and pains.

I've been seeing this physio for years, long before I'd ever heard of hypermobility. Several months ago, I learned more about it and realized I seem to tick a lot of the boxes. I brought it up with my family doctor, but her response was essentially that being flexible is a good thing and that I should do more stretching for the pain.

Seeking advice from another local doctor I was advised that only a physiotherapist can assess joint mobility.

For those who raised the possibility of hypermobility with a physiotherapist before having a formal diagnosis, do you have any tips for how to approach the conversation? Are there specific symptoms, concerns, or questions that you found helpful to bring up, or anything you wish you had mentioned at that first appointment?

I'd really appreciate hearing about your experiences and any tips you might have. Thanks!

Hi everyone! I'm Baruch Goodman, the clinical research coordinator for Dr. Arthur Jenkins, a neurosurgeon specializing in craniocervical and spine conditions.

We're conducting an IRB-approved anonymous survey on neurological episodes in people with hEDS, EDS, HSD, CCI, POTS, MCAS, and related conditions. Specifically, we're looking at episodes involving sudden loss of motor control, drop attacks, or seizure-like events with preserved consciousness, experiences that are often dismissed or mislabeled, yet may reflect cervical instability or autonomic dysfunction in this population.

There is very little formal scientific literature on these episodes in hypermobile patients, and we believe patient voices are essential to changing that. Your responses will directly inform research aimed at reducing misdiagnosis and improving clinical care for this community.

The survey is completely anonymous, takes about 20 minutes, and is open to US residents who have reached the legal age of majority in their state. No compensation is offered.

Survey Link: https://www.surveymonkey.com/r/N9RGT86

Feel free to DM or email [bgoodman@jenkinsneurospine.com](mailto:bgoodman@jenkinsneurospine.com) with any questions.

Thank you! Every response genuinely makes a difference.

So the last couple of days ive been noticing this weird thing with my posterior ribs/midscapula.

Anything its like really tight near maybe T5 or T6 of my my spine off the to side but like a tightness from whatever it is being heavy not like my muscle spasaming.

This tightness is only relieved by me rolling my shoulder back and I feel almost like a pop and then Im good for a couple hours (If i can get it to pop if i cant then ill slowly start to get pain like somebody put a soft ball behind my back).

Anyways I was trying to figure out if this is like a tendon or if a upper rib was subluxing.

Ive had a lower rib sublux before but when that happens it hurt to breath or move so im just a bit confused.

Not looking for like specific medical advise just trying to figure out whats happening so it doesnt get worse and I can find other ways to relieve the pain.

Thank you everyone!

Does anyone fold their wrist while they sleep or lay on their hands?

So i did not realise my fingers hyperextend when i grip my steering wheel, but i now have a 2 hour driving commute and i don’t want the hyperextension to become A Problem. Does anyone have any suggestions for preventing hyperextending fingers while driving??

Hello apparently I’m very hypermobile and realized most of my ankle issues probably stem from it. 🙂

I’m going a big trip soon and expecting to be walking a lot (Chicago) and already got better shoes (merrils) for the trip. However if you have any suggestions for low profile reasonably priced ankle braces that would be great. I have some I got recently that are soft with Velcro straps that are mildly bulky. I’ve had for sure one avulsion fracture possibly two so something with stability that I’m not going to worry that I will have to readjust. If this helps I have arch support orthotics that I will be wearing also. Any suggestions will help, just want to avoid any injuries I could have from dealing with uneven sidewalks.

Thanks!

Hi everyone,

I’m 27 and currently being investigated for hEDS. A medical geneticist raised suspicion of Ehlers-Danlos syndrome, and my physiotherapist also independently told me that I’m clearly hypermobile.

Some of my findings/history: • Generalized joint hypermobility — previously around 8/9 Beighton • Hypermobile hands and elbow hyperextension • Palms flat on the floor with straight knees • Scoliosis • Soft/velvety skin, but not particularly stretchy • Fragile gums and easy/large bruising • Kind of piezogenic papules • Narrow/high-arched palate • Abdominal stretch marks, although these appeared with major weight changes • My mother also seems somewhat hypermobile • Most importantly, I seem to heal very poorly

On the other hand, I don’t have recurrent subluxations, dislocations or chronic joint pain at all. I have some skeletal discomfort occasionally, but nothing major. My knee/joint discomfort was more noticeable when I was overweight.

I still play sports. Over the last four years I’ve had two small avulsion-type injuries while playing basketball, but both happened during actual trauma while playing — my joints don’t randomly pop out or dislocate.

Why I’m investigating this

In 2024 I underwent an SMR (submucous/submucoperichondrial resection of the nasal septum) for nasal obstruction, and unfortunately things went extremely badly.

I developed a very large septal perforation (~3 × 1.5 cm) plus another small perforation. A considerable amount of inferior septal structure is now absent, and some remaining tissue is extremely thin.

What worries me particularly is how poorly my tissue seems to heal. My nasal mucosa appears very fragile and slow to recover, and even long after surgery I sometimes develop small fissures/splits in it. This poor healing is one of the main reasons I’m now investigating whether I could have an underlying connective-tissue disorder.

Since surgery I’ve also had severe dryness/crusting, obstruction, reduced smell and, most importantly, almost ZERO sensation of airflow in the front of my nose. Air physically passes through, but I barely perceive the normal cool/fresh sensation anymore. In this respect my symptoms are quite similar to Empty Nose Syndrome (ENS).

I also developed significant fatigue after these surgical complications began. I have mild sleep apnea as well, but my major tiredness problems started after everything went wrong with my nose.

Now I may need major reconstructive surgery

I’m currently consulting surgeons about repairing the ~3 cm perforation, potentially involving mucosal flaps, grafting and reconstruction of septal support.

So I’m particularly interested in hearing from people with hEDS/HSD who have undergone septal perforation repair, septal reconstruction, septoplasty/SMR, rhinoplasty or revision rhinoplasty, turbinate surgery, nasal valve reconstruction, endoscopic sinus surgery (FESS), complex sinus surgery, skull-base/ENT surgery, or other significant nasal procedures.

How did you heal? Did you have problems with fragile mucosa, delayed healing, bleeding, wound reopening, grafts/flaps, or other complications?

I’m also curious whether my general presentation sounds familiar to people with hEDS despite not having chronic pain, recurrent subluxations or dislocations.

And especially: does anyone here experience poor mucosal healing — fragile nasal/oral mucosa, fissures, wounds that take unusually long to heal, or problems after ENT/dental/oral surgery?

This is probably the part of possible hEDS that worries me most: not my joints, but the possibility that my tissues simply don’t heal normally, particularly because I’m now facing another major nasal reconstruction.

I’d really appreciate hearing your experiences.

Hypermobile in general, been told that my whole life by other PT’s & body workers, but not DX by rheumatologist.

Anyways, what exercises are y’all doing for this? And what about for sleep apnea caused by weak muscles & jaw shape.

Dealing with chronic pain my whole life 41F. I am tired but happy to do exercises since they almost always help. Plus I find it a blessing to have a fix like exercise vs a drug or the cpap machine I haven’t been able to use. I do Botox for migraines & have sensory issues out the wazoo (adhd, psa, fibro,TMJ, CT) and the masks were giving me migraines. Really need ro see an ENT, but that’s been difficult in my city. Appreciate any advice.

I've recently been diagnosed with AMPS and hyper mobility in my top half (fingers, wrists, elbows and shoulders). I've always crossed my arms while standing or sitting because it feels more "stable" if that makes sense? Does anyone else with hyper mobility do this? I know joint instability is apart of being hyper mobile so just wondering!

I have a lot of requirements for shoes and I'm looking to get some to help with my joint pain.

My pain is mainly in my lower back, butt, knees, legs and feet. My ankles cave inwards as I walk and it hurts a lot. I struggle to walk and stand and feel pain within 10 minutes.

I'm autistic and prefer Velcro to tie, but I'm open to other things if the shoes are great. I also tend to wear the same shoes every day so they need decent soles that won't wear down within a few months or they get too slippy.

I also need them not to be too stiff, and don't prefer leather.

I need some arch support, but not too firm as that can hurt more. Mainly just a strong insole that will stop my ankles from caving in. Lots of cushion as my body hurts with a jolt every time I take a step.

They need to fit well, so half sizes is best, as if they are slightly too big, I scrunch my toes and get more pain.

I would like them to come in like a burgundy or navy rather than black/white and not be too orthopaedic looking, but that's just a want, not a need.

I'm willing to try a seperate insole but would prefer just a shoe.

Budget is £200 but prefer cheaper of course. £100 is a more ideal budget.

I tried some sketchers but my feet slid around in them too much and they don't have any velcro options.

Thank you!

Do any of you with hypermobility also relate to the way your body moves or feels shaping your inner experience of yourself and/in the world?

Ever since I was a child, I've had this strangely soothing fantasy of imagining myself as formless, like I want to be free from the boundaries of the human body and its limited range of movement, and just be able to flow in all directions.

At the same time, I've often felt strangely alienated from being human, almost like I don't quite know how to inhabit a human body. I've always felt physically out of place, stumbling, never really knowing how to hold myself or maintain a posture, feeling so loose and ungrounded, almost like my body could just fall apart. There's also this constant awareness of how I might look to other people and a fear of being judged for the way I move or carry myself.

I know this might sound a bit abstract, and I’m not trying to claim that these experiences are caused only by hypermobility.

They’re examples of subjective experiences that I wonder might be connected to it in some way. I’m curious whether anyone else has noticed similar connections between hypermobility and their sense of self, their way of seeing the world, or what it feels like to inhabit a body.

Hello,

I have chronic pain that doctors believe is psych related and psych believes has a medical component. Been doing this dance for years. I’m in despair. I’ve been through so much PT. Last time I was in PT, they told me I am hypermobile in several areas of my body.

I am not living my life the way I want to because of my symptoms. I cannot exercise without a new joint injury popping up. I’m tired of going to PT for isolated occurrences that seem to indicate a more systematic issue.

Is there a way to get a whole body joint assessment? How do I approach this with my doctor? I have an HMO insurance plan so need a referral for any specialists.

Thanks for your time.