Clinical Perspective — Hypermobility & hEDS
No Two Cases of Hypermobility Are the Same
Which is exactly why there is no such thing as the hypermobility protocol. There is an approach — evaluate broadly, fix the foundation, prune what is left, and maintain it for life.
Jacques Courseault, MD, CAQSM, FAAPMR
The Fascia Institute and Treatment Center® — New Orleans
· Flexibility patterns · Pain · POTS · MCAS · Brain fog · Fatigue · Injury history · Genetics · Occupation
1
Diagnosis on the chart
12+
Systems that can be involved
0
Two identical patients
∞
Ways to combine them
01 — The Same Word, Very Different Bodies
Two patients, one diagnosis, almost nothing in common
One is a 27-year-old dancer who can fold herself in half but has never dislocated anything. Her problem is a deep, burning ache along the back of her hips that shows up on day three of a heavy rehearsal week, and a heart rate that climbs 40 beats when she stands up in the morning.
The other is a 44-year-old attorney who has never been flexible a day in his life — except his thumbs, his elbows, and, it turns out, his entire thoracic spine. He has no dislocations either. His problem is fifteen years at a monitor, a jaw that clicks, three unexplained hospital visits for what turned out to be a mast cell response to a new supplement, and a fatigue that no amount of sleep touches.
Both have hypermobility. Both are on the same page of a textbook. If you handed both of them the same printed protocol — the same stretches, the same compression garment, the same supplement stack, the same start-with-pelvic-floor sequence — you would help one of them a little and set the other one back six months.
This is the single most important thing to understand about a hypermobile body: the diagnosis tells you the material you are working with. It tells you almost nothing about what to do on Tuesday.
02 — What Actually Varies
The variables are not small, and they multiply
When people hear that everyone is different, they usually picture minor variation — a little more of this, a little less of that. In hypermobility, the variation is structural. Each of the axes below can sit anywhere from absent to dominant, and they interact. That is why two people with the same score on the same exam can need almost opposite plans.
| Flexibility & distribution | Some patients are globally lax. Some are lax in five joints and rigid everywhere else — a very common and very frequently missed pattern. Some are hypermobile in the spine and thorax while their limbs look ordinary on exam. |
| Pain | Sharp and joint-centered in one person; diffuse, deep, and fascial in the next; nerve-flavored (burning, electric, gloving) in a third. Same label, three different treatment targets. |
| Dysautonomia & POTS | Absent in many. In others it is the dominant symptom — lightheadedness, exercise intolerance, temperature dysregulation, post-meal crashes, tachycardia on standing. Where this sits on the list changes the entire order of operations. |
| Mast cell activation | Some patients tolerate everything. Others flush, itch, swell, or crash from foods, heat, exercise, or a new supplement. Treating tissue before the mast cell layer is calmer is often why good treatment produces a bad week. |
| Brain fog & cognition | Word-finding trouble, losing the thread mid-sentence, reading the same paragraph four times. For some patients this is more disabling than the pain — and it responds to different things than the pain does. |
| Fatigue | Ranges from tired by evening to a payback pattern where a normal Saturday costs three days. Fatigue architecture determines how much loading a body can absorb, which determines how fast anything else can move. |
| Injury history | A patient with twelve ankle sprains, two shoulder subluxations, and a decade-old whiplash is carrying a very different scar and compensation map than a patient who has never been hurt. Old injuries are not history; they are current mechanics. |
| Computers & posture load | Nine hours at a desk with a laptop on a stack of books loads the neck, jaw, and thorax in a way no exercise program overcomes if the desk does not change. This is one of the highest-yield and most ignored variables we see. |
| Occupation | A nurse on twelve-hour shifts, a surgeon holding static positions, a hairstylist with arms overhead, a truck driver absorbing vibration, a stay-at-home parent lifting a growing toddler forty times a day — each demands a different plan, not a different intensity of the same plan. |
| Athlete vs. non-athlete | An athlete’s problem is usually load management and force distribution. A deconditioned patient’s problem is usually capacity. Give the athlete program to the deconditioned patient and you cause a flare; give the deconditioned program to the athlete and you waste a season. |
| Genetics | Family patterns, methylation and folate-related variants, and other inherited factors shape how connective tissue is built and maintained. This is an active research area — it explains real differences in some patients, and it is not the whole story in any of them. |
| Diet & nutrition | Protein intake, iron and B-vitamin status, sodium and fluid needs, food-trigger patterns, GI motility. Two patients with identical joints and different nutrition heal at different speeds. |
| Environment | Heat, humidity, mold exposure, air quality, sleep environment, work environment, stress load, and how much control the patient actually has over any of it. New Orleans summers alone change what is possible in July versus January. |
Thirteen axes. If each one had only three settings, that is over a million combinations. Real bodies have more settings than three.
03 — Why The Protocol Fails
A protocol is an average. You are not an average.
A protocol is a reasonable answer to the question of what helps most people. It is a poor answer to the question of what this person should do next. And in hypermobility, the gap between those two questions is unusually wide, for three reasons.
The absence of a protocol is not the absence of a plan. It is the presence of judgment.
It is also worth saying plainly: the published diagnostic criteria themselves are imperfect and under active revision. Whether a given patient lands on the hypermobile Ehlers-Danlos side of a checklist or the hypermobility spectrum disorder side does not change how we treat them, and it does not change how much they are suffering. A dysfunctional body is dysfunctional whether it is a little or a lot. We will treat you wherever you are on the spectrum.
04 — The Approach
Four phases, in this order, every time
What generalizes across every hypermobile patient is not the treatment. It is the sequence. This is the framework we run at The Fascia Institute, and the content inside each phase is built from that specific person’s exam, labs, imaging, work, and life.
05 — What Is Included, and What Is Optional
We would rather you know up front, so nothing is a surprise
Because every plan is built individually, patients often ask what comes with the program and what is chosen along the way. We are happy to lay that out plainly — you should never find out about a cost after the fact, and you should never feel obligated to add something you are not ready for.
None of these decisions have to be made on day one. We will walk through the options with you, tell you what we would recommend and why, and give you the cost before anything is scheduled. If something is not in the budget right now, say so — we will build you a plan that works without it.
06 — Bring It to the Shop
You drive it. We service it. Neither one is optional.
A hypermobile body is a high-performance body. That is not a consolation prize — it is an accurate description of the material. Hypermobile people are disproportionately represented among dancers, gymnasts, musicians, and athletes for a reason. But high-performance machines are high-maintenance machines. Nobody buys a Ferrari and is offended that it needs servicing more often than a sedan.
What we ask of patients is the same thing you would do with that car. You handle the daily care, and you bring it in on a schedule instead of waiting for the tow truck. Coming in for maintenance is not a sign the plan failed. It is the plan.
What the daily side usually includes:
· A movement program built for your specific lax and stiff map — not a generic stretching routine, which for many hypermobile patients is actively counterproductive
· Loading that builds capacity without provoking your particular flare pattern
· Hydration, electrolytes, and nutrition matched to your autonomic and metabolic findings
· Workstation and occupational load changes, which for desk-based patients often outperform everything else on the list
· Pacing and sleep strategy, especially if fatigue or payback is part of your picture
What the periodic visit is for: re-mapping what has drifted, catching a new compensation before it becomes an injury, treating what needs hands and instruments, and updating the daily program so it keeps matching the body you have now instead of the one you had a year ago.
07 — A Careful Word About the Internet
There are a lot of good people online. There is also a lot of damage.
Let me be fair first, because this deserves fairness. Some of the most useful information in this field is being shared by patients, advocates, and clinicians online, for free, often at personal cost. Support groups have gotten people diagnosed who had been dismissed for a decade. Patients frequently arrive at our office better informed than the last three providers they saw. That is a good development and I am not asking anyone to stop reading.
But here is what we also see, week after week. Patients come in having spent money they did not have on something a stranger with a large following was confident about. Sometimes it was simply a waste — an expensive supplement stack, a device, a program that did nothing. Sometimes it was worse than a waste. Aggressive stretching that made an unstable joint more unstable. A modality applied to inflamed, reactive tissue that set off a flare lasting months. An elimination diet followed so strictly that the patient became malnourished. A supplement that was fine for most people and a serious problem for a mast-cell-reactive body. A protocol from a body that shared a label with theirs and nothing else.
The failure mode is not that the information was false. It is that it was built for someone else’s body, and there was nobody in the loop to notice that you are not that person.
A few things worth holding onto when you are evaluating what you find:
· Confidence is not evidence. The most certain voice in a thread is often the one with the least clinical exposure to how differently these bodies behave.
· Be alert when someone is selling the answer. Not everyone selling something is wrong — but a protocol, a stack, or a program that works for every hypermobile patient does not exist, and anyone marketing one has already told you something important.
· It cured me is a real story and a sample size of one. Take it seriously as a lead. Do not take it as a plan.
· Anything aggressive deserves a second opinion first. Hard stretching, intense manual work, high-dose anything, prolonged restriction. These are the interventions we most often have to undo.
· Change one thing at a time. Four new interventions in one week means that when something goes wrong, or right, you will never know which one did it.
· Bring it in. Print the post. Screenshot the thread. Put the supplement bottle in your bag. We would much rather spend ten minutes telling you an idea is reasonable, or not, than spend six months repairing what it did.
08 — The Team
Keeping this system healthy is a team effort
No one holds this alone — not the patient, and not the physician. You are the one who lives in the body, notices the pattern, does the daily work, and reports back honestly about what helped and what did not. We are the ones who evaluate, image, treat, interpret, and adjust. Add the physical therapist, the trainer, the nutrition support, the specialists we coordinate with, and the family members who make the daily program possible, and you have an actual team.
The patients who do best over years are not the ones who found the perfect protocol. They are the ones who built a stable team, understood their own body’s specific pattern well enough to make good decisions between visits, and kept showing up for maintenance instead of waiting for the next crisis.
That is the offer. Not a protocol — a process, and people who know your specific version of this.
The Fascia Institute and Treatment Center®
Let us find out what your version of this looks like
A full evaluation, a foundation-first plan built for your body and your life, and a maintenance rhythm you can actually keep. Bring your questions — and bring what you found online. We would rather look at it together.
Selected References and Further Reading
Malfait F, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C. 2017;175(1):8–26.
Castori M, et al. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet C. 2017;175(1):148–157.
Ritelli M, et al. Perspectives on the diagnostic criteria for hypermobile Ehlers-Danlos syndrome and the need for revision. 2024.
Monaco A, et al. Association of mast-cell-related conditions with hypermobile syndromes. Immunol Res. 2022.
Bonamichi-Santos R, et al. Association of postural tachycardia syndrome and Ehlers-Danlos syndrome with mast cell activation disorders. PMID 31267471. These conditions co-occur clinically; the underlying mechanism remains under investigation.
Courseault J, et al. Folate-dependent hypermobility syndrome: a proposed mechanism and diagnosis. Heliyon. 2023;9(4):e15387.
This article is for general education and does not constitute medical advice, diagnosis, or treatment, and does not create a physician-patient relationship. Hypermobility presentations vary widely; nothing here should be applied to your own body without evaluation by a qualified clinician who has examined you. Individual results vary.
