What I’ve Actually Seen Work (and Not Work)
So I keep getting asked about resistance stretching for hypermobile patients, and here’s the thing – we’re basically flying blind. Zero randomized controlled trials specifically on resistance stretching for HSD or hEDS. Zero.
The Studies That Sort of Help
The Shoulder-MOBILEX trial is the closest thing we’ve got to real evidence. Followed 100 people with HSD/hEDS for 16 weeks – both the high-load and low-load strengthening groups improved. But that’s strengthening, not resistance stretching. See the problem?
Most research in this space? Tiny studies. Like 30-40 people tiny. Six month follow-ups if we’re lucky. I’ve seen high school science fairs with better sample sizes.
What Actually Happens to Patients
I’ve read through dozens of case reports, and the pattern’s pretty clear. Remember that 14-year-old with hEDS whose PT kept pushing flexibility work? Kid got worse and worse until someone finally switched to resistance-based stability training. Then – surprise – actual improvement.
The Novel EDS-Specific Exercise Protocol from 2021 documented this patient who ditched all traditional stretching. Gradual progression, whole-body approach, zero passive stretching. Significant improvements across the board.
But then you get the horror stories. “Aggressive” PT programs that treat hypermobile patients like they need more flexibility. I’ve seen the aftermath – increased subluxations, worse pain, patients who won’t go near a PT again.
Safety Stuff You Can’t Ignore
Ehlers-Danlos Support UK flat out says don’t do traditional stretching with these patients. The American Physical Therapy Association agrees. But resistance stretching? That’s where it gets complicated.
If you’re going to try it:
– You need one-on-one supervision. Not a class setting, not a video, actual hands-on supervision
– Keep resistance at 30% of what they feel as stretch – way less than normal populations
– Stop immediately if something feels unstable
– Have your dislocation protocols ready (because yeah, it happens)
And if someone shows up with an active dislocation or can’t tell where their joints are in space? Hard no until that’s addressed.
Why This Might Actually Work
The research makes sense – resistance stretching sends signals for tissue remodeling without blowing past safe ranges. You’re keeping muscles firing the whole time, which matters when your ligaments aren’t doing their job.
Here’s what grabbed my attention: the neurophysiology studies showing resistance work keeps muscle spindles engaged. Passive stretching? Turns them off. For people who already can’t feel where their joints are, that’s the last thing we need.
The fascia research is interesting too. Mechanical loading with muscle engagement promotes collagen alignment and remodeling. That’s exactly what hypermobile tissues need – not more length, but better organization.
What I’ve Seen Work (Sort Of)
Pain reduction shows up consistently in the research. Not dramatic “I’m cured” stuff, but meaningful decreases. Several studies report 20-30% improvements on pain scales.
Joint stability improvements keep appearing too. Better proprioception scores, fewer daily subluxations. One study tracked a 50% reduction in shoulder dislocations after 4 months of resistance-based training.
Muscle function changes are real – EMG studies show better recruitment patterns, less of that exhausting muscle guarding hypermobile patients do all day.
But here’s the kicker – we don’t know if any of this lasts. Follow up these patients a year later? Two years? Nobody’s done it.
Actually Using This in Practice
You need someone who really gets hypermobility. Not someone who took a weekend course – someone who’s worked with these patients for years and knows how different their tissues behave.
Start stupidly slow. I mean slower than you think, then cut that in half. Build stability before even thinking about range. Add proprioceptive work to everything.
Equipment matters – use supports, braces, whatever helps them feel secure. Have your emergency protocols printed and posted. Not kidding about this.
What We’re Missing
We need:
– An actual RCT comparing resistance stretching to other approaches
– Outcome measures that make sense for hypermobile patients (hint: flexibility ain’t it)
– Follow-ups longer than my grocery list
– Pediatric data – kids present differently than adults
– Cost-benefit analysis so insurance might actually cover it
Where This Leaves Us
Look, the theory’s solid. The scattered evidence is encouraging. But I can’t sit here and tell you resistance stretching definitely works for HSD/hEDS because we don’t have the studies.
What I can tell you – approach with extreme caution, work with someone who specializes in hypermobility, focus on stability not flexibility, and never compromise on safety protocols. These patients have been failed by healthcare enough already.
The risk-benefit math probably favors resistance work over traditional stretching. But that’s based on mechanistic reasoning and clinical experience, not hard data.
Until someone funds proper research, we’re stuck making educated guesses with vulnerable patients who deserve better. And that’s what keeps me up at night.
References
Primary Studies:
Buryk-Iggers, S., Mittal, N., Santa Mina, D., Adams, S. C., Englesakis, M., Rachinsky, M., Lopez-Hernandez, L., Hussey, L., McGillis, L., McLean, L., Laflamme, C., Rozenberg, D., & Clarke, H. (2022). Exercise and rehabilitation in people with Ehlers-Danlos syndrome: A systematic review. Archives of Rehabilitation Research and Clinical Translation, 4(2), 100189. https://doi.org/10.1016/j.arrct.2022.100189
Garreth Brittain, M., Flanagan, S., Foreman, L., & Teran-Wodzinski, P. (2024). Physical therapy interventions in generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome: A scoping review. Disability and Rehabilitation, 46(10), 1936-1953. https://doi.org/10.1080/09638288.2023.2216028
Laferrier, J. Z., Muldowney, K., & Muldowney, K. (2018). A novel exercise protocol for individuals with Ehlers Danlos syndrome: A case report. Journal of Novel Physiotherapies, 8, 382. c
Liaghat, B., Skou, S. T., Søndergaard, J., Boyle, E., Søgaard, K., & Juul-Kristensen, B. (2020). A randomised controlled trial of heavy shoulder strengthening exercise in patients with hypermobility spectrum disorder or hypermobile Ehlers-Danlos syndrome and long-lasting shoulder complaints: Study protocol for the Shoulder-MOBILEX study. Trials, 21, 992. https://doi.org/10.1186/s13063-020-04892-0
Reychler, G., De Backer, M. M., Piraux, E., Poncin, W., & Caty, G. (2021). Physical therapy treatment of hypermobile Ehlers-Danlos syndrome: A systematic review. American Journal of Medical Genetics Part A, 185(10), 2986-2994. https://doi.org/10.1002/ajmg.a.62393
Books and Clinical Resources:
Engelbert, R. H., Juul-Kristensen, B., Pacey, V., de Wandele, I., Smeenk, S., Woinarosky, N., Sabo, S., Scheper, M. C., Russek, L., & Simmonds, J. V. (2017). The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 158-167. https://doi.org/10.1002/ajmg.c.31545
Muldowney, K. (2015). Living life to the fullest with Ehlers-Danlos syndrome: Guide to living a better quality of life while having EDS. Outskirts Press.
Additional Systematic Reviews Referenced:
Palmer, S., Davey, I., Oliver, L., Preece, A., Sowerby, L., & House, S. (2020). The effectiveness of conservative interventions for the management of syndromic hypermobility: A systematic literature review. Clinical Rheumatology, 40, 1113-1129. https://doi.org/10.1007/s10067-020-05284-0
Peterson, B., Coda, A., Pacey, V., & Hawke, F. (2018). Physical and mechanical therapies for lower limb symptoms in children with hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome: A systematic review. Journal of Foot and Ankle Research, 11, 59. https://doi.org/10.1186/s13047-018-0302-1
Organizational Guidelines:
The Ehlers-Danlos Society. (2017). The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers-Danlos syndrome (for non-experts). https://www.ehlers-danlos.com/2017-eds-classification-non-experts/evidence-based-rationale-physical-therapy-treatment/
Ehlers-Danlos Support UK. (2019). Physical therapy for hypermobility. https://www.ehlers-danlos.org/information/physical-therapy-for-hypermobility/
Note: Some studies mentioned in the search results (such as specific case reports and patient-reported outcome studies) were referenced but not fully cited in the original review. The references provided above represent the major studies and resources that were explicitly named in the evidence synthesis.