Hypermobile Ehlers-Danlos Syndrome (hEDS)
Can you feel steady without bracing every time you move?
You may be able to hold a plank and still feel like you have to tighten your stomach before getting out of a chair. The plank tells me what you can do when you set up for it. Standing tells me how you organize that support while you move.
What hEDS can mean for movement
hEDS is a connective tissue disorder. People with hEDS can have joint pain, joints that feel unstable, or repeated sprains or dislocations. A clinician uses the full diagnostic criteria and considers other explanations. Being flexible on its own doesn’t establish hEDS. Symptomatic hypermobility can also fall under a hypermobility spectrum disorder, or HSD. [1, 2, 3]
What the diaphragm and pelvic floor do while you move
The diaphragm is the main breathing muscle under your ribs. The pelvic floor is the group of muscles at the bottom of the pelvis. Together with the abdominal wall, they help adjust intra-abdominal pressure, the pressure inside your abdomen. Lab studies show that the diaphragm and pelvic floor take part in both breathing and movement-related support. Pressure can contribute to how firmly the lower spine resists movement under experimental conditions. [4, 5, 6]
What I check when standing up takes a lot of effort
I start by asking when you feel unsteady and what you already do to get through it. If you tell me you hold your breath to get up from a chair, we can try the same chair with a small change in foot position, support, or breathing timing. Then we repeat it and compare how steady you feel, how much effort it takes, and whether your breath stays comfortable.
At a treatment visit, I may use a gentle hands-on cue to help you feel the movement, then repeat it with less input from me. If you have to think through every step for it to work, that tells me what we still need to practice. I use automatic stability to describe the goal of feeling steadier during a familiar task with fewer cues over time.
Where the research fits
Reviews of hEDS and HSD rehabilitation support individualized exercise and movement-control training, though studies are often small and the programs differ. One small spinal stabilization trial studied women with an older joint hypermobility diagnosis. The breathing and pressure studies explain why coordination is worth assessing, while evidence for a specific diaphragm-and-pelvic-floor protocol in hEDS is limited. Evidence for hands-on therapy in hEDS is also limited. [7, 8, 9, 11]
Strength still matters, especially as you build toward activities that require more effort. I choose a starting load you can manage and use your response during the task and afterward to decide when to progress. [10]
Frequently asked questions
Why do I feel steady when I think about how I move, then wobbly when I get distracted?
I’d ask which task shows the difference. We can compare it with a cue and again with less input from me. That helps us see what support you can use without having to think through every step.
The chair felt easier here. How do I tell whether that carries over at home?
Notice whether you still have to pause, hold your breath, or prepare to stand from your usual chair. We can use that everyday stand to decide how much cueing still helps.
Why can my joints move so far and still feel stiff?
I’d ask when the stiffness appears and what position makes you feel like you have to hold yourself there. We can compare supported movement and see where you feel both comfortable and steady.
What if I feel fine during practice and wiped out afterward?
Tell me when the fatigue shows up and what else you were doing that day. We can use that information along with what happens during the task to decide how much practice fits right now.
How can I have a strong core and still feel unsteady?
Strength is how much force you can produce. Control is how you use it while the task changes. I check both using a movement you recognize.
Should I tighten my stomach all day?
I look for support that adapts as the task changes. A heavy lift may call for a different strategy from standing up, taking a step, or reaching for a cup.
Do I need pelvic floor squeezes?
That depends on what you’re experiencing and what the exam shows. I can start by observing breathing and movement externally. Pelvic pain, pressure, or leakage may call for a pelvic health assessment.
Can I feel a change at the first visit?
A movement may feel steadier when we change the setup. That gives us something to work with. We also check whether it carries over later and holds up as the task gets more demanding.
Can a movement test tell me whether I have hEDS?
A movement test tells us about that task. A diagnosis requires a broader clinical history and exam, including consideration of other conditions.