It’s not uncommon for those with hypermobility and EDS to reach a point where movement itself becomes the thing they’re most afraid of. Not the diagnosis, not the pain flare that happened last Tuesday, but movement, full stop. The act of bending, reaching, walking across an uneven surface, or even just getting up off the sofa can start to feel genuinely dangerous, like the body is one wrong move away from catastrophe.
If you’re reading this and that sounds familiar, you’re in very good company. A very large amount of people in the hypermobility community experience this, often without ever having a name for it. The name, for what it’s worth, is kinesiophobia. And whilst that’s a somewhat intimidating word for something that literally just means “fear of movement”, understanding it properly, where it comes from, how it develops, and what genuinely helps, is one of the more useful things you can do for yourself if you’re trying to rebuild your relationship with physical activity.
Now, I want to be upfront about something before we get into this. When it comes to kinesiophobia in hypermobility and EDS, this is a topic I feel genuinely strongly about, because it sits right at the intersection of the physical and the psychological in a way that a lot of other topics don’t. It’s also an area where the standard advice, the “just push through it” or conversely the “you must rest completely” messaging, tends to fail people spectacularly. The research, whilst not enormous, is interesting. And some of it is quite surprising.
This article is going to be a long one. We’re going to cover what kinesiophobia actually is and how it’s measured, the fear-avoidance cycle and why it tends to spiral in hypermobility, the proprioception problem that makes the fear feel so rational, the link between kinesiophobia and fatigue, fear of falling as its own separate issue, why your beliefs about pain matter more than you might think, what the evidence says actually helps, and, critically, the nuance around not over-pathologising perfectly intelligent decisions about movement. There’s a lot to cover. So, if you’re ready, let’s go.
What Kinesiophobia Actually Is (and How We Measure It)
Kinesiophobia is defined as an excessive, irrational, and debilitating fear of physical movement and activity resulting from a feeling of vulnerability to painful injury or re-injury. That’s the formal definition from Kori, Miller and Todd back in 1990, who coined the term. The word comes from the Greek “kinesis” (movement) and “phobos” (fear), so it does exactly what it says on the tin.
Now, it’s worth being clear about the word “irrational” in that definition, because when it comes to hypermobility, that’s actually one of the more complicated parts of the whole picture. We’ll come back to that. For now, the important thing to understand is that kinesiophobia isn’t just being cautious about movement. It’s a specific pattern where the fear of what movement might do becomes, in and of itself, a driver of avoidance and disability. The fear starts doing as much damage as the original injury or condition.
So how do we measure it? The most widely used tool is the Tampa Scale for Kinesiophobia (TSK), a 17-item questionnaire where people rate their agreement with statements like “pain always means I have injured my body” and “my body is telling me I have something dangerously wrong.” Scores range from 17 to 68, with higher scores indicating more kinesiophobia. The conventional cut-off for clinically significant kinesiophobia is typically around 37.
Here’s the number that stopped me when I first came across it. Have you ever seen a statistic and just had to sit with it for a moment? A 2013 cross-sectional study by Celletti and colleagues, which looked at 42 patients with joint hypermobility syndrome and EDS hypermobility type, found that 93% of participants scored above the kinesiophobia cut-off on the Tampa Scale (1). Ninety-three percent. In a group that was already selected because they had chronic pain related to their condition. That’s a striking finding, and whilst we have to be honest about the limitations, which include a very small sample, an almost entirely female cohort, and a single-centre design, it gives you a strong signal about just how prevalent this is. It’s not a fringe experience for those with hypermobility. It may well be the norm.
However, a single small cross-sectional study isn’t the whole story, and we should resist the temptation to treat 93% as a universal truth. What it does tell us, with reasonable confidence, is that kinesiophobia deserves to be taken seriously in this population rather than dismissed as an edge case or a sign of psychological weakness.
The Fear-Avoidance Cycle and Why It Tends to Spiral
To understand kinesiophobia properly, you need to know about the fear-avoidance model. This was developed by Vlaeyen and Linton in a seminal 2000 review paper (3), and it remains one of the most influential frameworks in chronic pain psychology. The basic idea is this: when someone experiences pain, they have two broad options. They can either confront it, gradually return to activity, test their body, and find out that movement doesn’t always equal damage, which eventually reduces the fear. Or they can avoid it, which feels safer in the short term but creates a vicious cycle.
The avoidance route looks something like this. You experience pain. You interpret that pain catastrophically, meaning you assume the worst about what it means: “this is doing real damage”, “I’m going to make this so much worse”, “something is seriously wrong.” That catastrophic interpretation produces fear of movement. Fear leads to avoidance of the activities associated with pain. Avoidance leads to physical deconditioning because you’re moving less. Deconditioning, over time, means that when you do move, it hurts more. More pain feeds back into more catastrophising, more fear, more avoidance. And round and round it goes. Sound familiar?
For a lot of people in chronic pain, this cycle explains a great deal of their disability. But for those with hypermobility, it’s worth pausing for a second to acknowledge that this model, as originally described, doesn’t quite capture everything that’s going on. Because in hypermobility, the catastrophic interpretation isn’t always catastrophic in the way we mean that word in pain psychology. Sometimes the concern about movement is grounded in very real lived experience. We’ll come to that shortly.
The fear-avoidance model also maps neatly onto what we know about how chronic pain develops and perpetuates in the nervous system, and it connects directly to the role of central sensitisation, where the nervous system becomes increasingly tuned to threat signals. When you’re in that sensitised state, movement itself becomes a threat signal, even if the underlying tissue is fine, that’s part of why understanding the fear component matters so much.
What’s interesting, and important, is that Vlaeyen and Linton’s original review identified what they called the “confrontation” pathway as the route toward recovery. Not aggressive, forced return to activity, but graduated confrontation with the feared stimulus. The idea being that only by actually testing the feared movement can you accumulate evidence that contradicts the catastrophic belief. Avoidance never gets to generate that evidence. It keeps the belief safely unchallenged.
However, this is where the conversation gets complicated for those with Ehlers Danlos syndrome and hypermobility. Because the confrontation pathway assumes you’ll find out the feared outcome doesn’t happen. And for some people with hEDS, some feared outcomes do occasionally happen. That’s not a small wrinkle. It fundamentally changes how we should approach graded exposure in this population, and we’ll look at that more closely when we get to the treatment section.
Why Hypermobility Makes the Fear Feel Rational (and Why That’s the Problem)
Here’s the thing that makes kinesiophobia in hypermobility genuinely different from kinesiophobia in, say, chronic low back pain following a disc injury. In most chronic pain populations, the fear of movement being damaging is, by definition, disproportionate. The tissue has healed. The movement doesn’t cause damage. The fear is what the field calls “irrational.”
But for those with hypermobility, there’s a real complication. Joints that have a genuine tendency to subluxate or dislocate don’t give you the same foundation for reassurance. When someone with hypermobile Ehlers Danlos syndrome tells you they’re scared their shoulder is going to come out, that’s not an unreasonable fear based on nothing. It may have happened to them dozens of times. The fear has a historical basis. This is not a cognitive distortion in the same clean way.
And then there’s the proprioception problem, which in my view is one of the most under-discussed aspects of kinesiophobia in this population. Why does this matter so much? Well, because it gets to the heart of why the fear in hypermobility isn’t just a psychological quirk.
Proprioception is your body’s ability to sense where its own parts are in space, to know, without looking, that your knee is bent at 30 degrees or that your shoulder is slightly elevated. It comes primarily from mechanoreceptors in your muscles, tendons, and joint capsules, which feed position and movement data up to your brain in real time. Think of it as an internal GPS system, constantly triangulating your position and feeding that information to your motor cortex so you can move with accuracy and confidence. A good GPS means you move fluidly. A poor signal means every movement feels uncertain.
A 2025 cross-sectional study of 83 participants, comparing hypermobile and non-hypermobile individuals, found that those with hypermobility showed significantly poorer proprioception at both the elbow and the knee, with Beighton scores correlating positively with proprioceptive error (7). Now this study had limitations, it was cross-sectional and the sample was relatively modest, but these findings support earlier work by Clayton, Jones, and Henriques from 2015, who found that EDS patients showed significantly impaired proprioceptive localisation of the hand compared to healthy controls, with the degree of impairment correlating with their Beighton scores (8).
So what does this mean in practice? It means the internal GPS is running on a degraded signal. When you move, the position data your brain receives is less precise than it would be in someone without hypermobility. The brain, which is constantly trying to predict what’s going to happen next and model the consequences of movement, is working with less reliable data. And a brain that can’t fully trust its own proprioceptive input has every reason to be more conservative, more defensive, more cautious about movement.
We’ve noticed this a lot with the clients we work with. There’s often a description of movement feeling unpredictable, that the body does things it wasn’t asked to do, that joints move further than anticipated, that the feedback just doesn’t match expectation. When your own body feels like it can’t be fully trusted, the fearfulness around movement isn’t irrational at all, it’s a logical response to genuinely unreliable information. The difference between navigating movement with accurate proprioceptive feedback versus degraded feedback really is, in a practical sense, the difference between navigating a familiar room in daylight and navigating the same room in the dark.
However, the point worth making here is that whilst the poor proprioception is real, avoidance doesn’t fix it. In fact, as we’ll discuss, avoidance tends to make proprioceptive function worse over time, not better, because you’re giving the nervous system less practice at the very thing it needs practice at. One of the more encouraging things about movement-based rehabilitation in hypermobility is that appropriate, targeted exercise can genuinely improve joint stability and proprioceptive precision over time, even if it takes patience to get there.
But, does that mean we should just encourage everyone to exercise through the fear? No. Not without a thoughtful structure around it. And that’s exactly what the evidence tells us.
Kinesiophobia and Fatigue: The Three-Phase Model
Back to Celletti’s 2013 study (1) for a moment, because it contained something beyond just the 93% figure that I think deserves attention. What if the most significant driver of fatigue in EDS isn’t the pain itself, but the constant vigilance around movement? The study found that kinesiophobia correlated strongly with general severity of fatigue, but, notably, did NOT significantly correlate with pain intensity. Meaning: the people who scored highest for kinesiophobia weren’t necessarily the ones in the most pain. They were the ones experiencing the most fatigue.
This led the researchers to propose a three-phase model specific to JHS and EDS hypermobility type: pain produces kinesiophobia, and kinesiophobia produces fatigue. Now, as a cross-sectional study with only 42 participants, we have to be careful about how much we read into this. Causation is very much off the table. But the finding is conceptually interesting because it flips the way most people think about fatigue in EDS.
The common assumption is that pain causes fatigue, or that the physical effort of living in a body that needs constant muscular compensation drives exhaustion. Both of those things are true. However, this model suggests there’s another route: the constant vigilance that kinesiophobia requires, the hypervigilance around every movement, every potential threat, the cognitive load of monitoring your body for danger signals all day, that vigilance is genuinely exhausting.
This is also amplified in hypermobility because of hypotonia, the reduced resting muscle tone that many with the condition experience. When your muscles are already working harder just to hold your joints in position during normal activities, the additional load of fear-driven muscular bracing, guarding, and restricted movement patterns adds up. If you’ve ever noticed yourself holding your breath and tensing everything when you move in a way that scares you, that’s exactly what we’re talking about. It’s costly. And it accumulates.
For anyone who’s already dealing with the exhausting overlap between pain and fatigue in hypermobility, the idea that addressing kinesiophobia might reduce fatigue is potentially significant, even if the evidence is still at an early stage. The relationship between fatigue and breathing mechanics in chronic illness adds another layer to this, particularly around how guarding and restricted breathing patterns can amplify exhaustion. It’s also worth noting that brain fog in EDS and POTS has similar roots in the cognitive overhead of constant threat monitoring, so the two experiences often travel together.
Fear of Falling: A Separate Problem That Gets Overlooked
Most of the research on kinesiophobia focuses on fear of movement and fear of pain. But a 2023 cross-sectional online survey by Chuchin and Ornstein, which looked at 168 people with hEDS and hypermobility spectrum disorders, identified something that hadn’t really been examined before in this population (2). Fear of falling.
This might seem obvious in retrospect. However, the study was actually the first to formally apply the full fear-avoidance model to hEDS and HSD, and in doing so, it found that fear of falling was a novel, independent predictor of disability, above and beyond general kinesiophobia, above and beyond pain severity, and above and beyond anxiety. It was one of the two strongest unique predictors of disability alongside pain severity itself.
Think about what this means practically. And ask yourself: how often does the fear of falling actually come up in clinical conversations about hypermobility? Not often enough, is the honest answer. For those with hypermobility, ankle instability is common. Proprioceptive deficits mean the ground feels less reliable underfoot. The fear of a misstep leading to an ankle rolling, a knee buckling, or simply losing balance and being unable to recover it quickly enough is not a fantasy. It’s a specific, experience-grounded concern. And it appears to be driving disability in ways that haven’t been adequately addressed, partly because interventions for kinesiophobia haven’t historically been designed with falling-specific fear in mind.
The study had limitations, including its cross-sectional design, its reliance on self-report, and the fact that online recruitment potentially skews toward more severely affected individuals. But the signal is there. If you work with or support people with hEDS or HSD, fear of falling deserves to be on the assessment checklist. And if you’re someone with hypermobility who has noticed that your fears aren’t just about pain but also about losing your footing, knowing that this is a documented, studied phenomenon, that you’re not being overly cautious or neurotic, that’s worth something.
When it comes to addressing fear of falling specifically, ankle and knee instability are two areas that can be directly targeted. Stability work for the knee in hypermobility and exercises for tibial rotation and ankle control are both relevant here, because building the musculature that supports unstable joints can genuinely shift the experience of movement from something that feels precarious to something that feels more predictable. Likewise, issues like wrist pain in hypermobilityfeed into a similar picture: a body where load-bearing and catching yourself when falling feels genuinely risky is a body that learns to fear movement for very practical reasons.
Why Your Beliefs About Pain Matter More Than the Pain Itself
This is the bit that tends to surprise people the most. We generally assume that how disabled someone becomes by chronic pain is primarily driven by how much pain they have. If you have more pain, you have more disability. Makes intuitive sense. However, the research is increasingly suggesting that this relationship is more complicated than that.
Is it possible that the biggest driver of disability in chronic pain isn’t actually pain? That might sound counterintuitive, but bear with me. A 2023 pooled analysis of a randomised controlled trial by Ryum and Stiles, involving 69 patients receiving exposure-based treatment for chronic low back pain, looked at what actually mediated improvements in disability (16). They found that pain catastrophizing, fear-avoidance beliefs, and pain self-efficacy each mediated the relationship between changes in pain intensity and changes in disability. In plain language: how you interpret your pain, how much you believe movement will make things worse, and how confident you feel in your ability to manage, these things turned out to matter more for disability reduction than the raw pain relief itself.
Now, this was a study of chronic low back pain patients, not specifically hypermobility. That’s an important limitation. But the finding is consistent with a broader pattern in pain research, and it aligns with what Vlaeyen and Linton’s original model would predict. The belief that pain equals damage, that movement will cause harm, that the situation is uncontrollable, these are the beliefs that drive avoidance and disability, sometimes more than the underlying sensation itself.
So what does this tell us? It tells us that interventions which only target the physical side of things, only address the joint stability or the tissue, may be missing a substantial part of what’s keeping people disabled. And this is especially relevant in hypermobility, where the symptom picture is often complicated by the emotional weight of medical trauma from years of delayed or dismissed diagnoses and by the genuine difficulty of finding practitioners who understand the condition properly.
It’s also worth flagging the finding from a 2025 cross-sectional study by Fletcher, Fischer, and Manocha, which found a high prevalence of depressive symptoms associated with fatigue and pain catastrophizing specifically in HSD and hEDS populations (19). Depression and pain catastrophizing tend to reinforce each other, each making the other harder to shift. However, this isn’t meant to be discouraging. It’s meant to explain why, when it comes to kinesiophobia, working only on strength and mobility sometimes genuinely isn’t enough. The psychological layer isn’t a secondary concern you deal with after you’ve sorted the physical stuff. It’s often the layer that makes everything else more possible.
What the Evidence Actually Says About Helping
Right. So we’ve established that kinesiophobia is extremely common in hypermobility, that it has multiple drivers including proprioceptive deficits, catastrophic pain beliefs, fear of falling and fatigue, and that your beliefs about pain matter at least as much as the pain itself. What actually helps?
Let’s be honest upfront: the evidence base for treating kinesiophobia specifically in hEDS and HSD is not large. A lot of what we have is from chronic pain populations more broadly. We’re going to be clear about that as we go. However, there are some consistent signals worth taking seriously.
Pain Neuroscience Education
One of the best-supported first steps is something called pain neuroscience education, or PNE. This is essentially the process of helping people understand what pain actually is, how the nervous system generates it, and why pain doesn’t always mean tissue damage. The idea is that changing the “pain equals damage” belief, even partially, reduces the threat value of movement and makes avoidance less compelling.
We have a reasonably good evidence base for this approach in chronic pain generally, and the conceptual grounding is solid. Understanding how central sensitisation drives pain in conditions like fibromyalgia and hypermobility is one part of this, and it genuinely shifts things for some people when they first grasp that a sensitised nervous system can produce real, severe pain without ongoing tissue injury. It doesn’t dismiss the pain. It reframes its meaning. There’s also a relevant connection here to hyperalgesia and the amplification of pain signals, which is a mechanism that helps explain why even gentle movement can register as intensely painful in a sensitised nervous system.
Graded Exposure
The gold standard intervention for phobias is exposure, and kinesiophobia is no different. Graded exposure involves creating a hierarchy of feared movements, from the least scary to the most scary, and then gradually working up through them, systematically collecting evidence that the feared outcome doesn’t materialise. The key difference from just gradually exercising more is the explicit targeting of the specific fear hierarchy, you’re not just building fitness, you’re building evidence against specific catastrophic beliefs.
A 2022 scoping review in Frontiers in Behavioral Neuroscience found that physical exercise is the most commonly used approach for managing kinesiophobia across chronic pain conditions, with physiotherapeutic approaches making up 69% of the interventions studied (5). The scoping review, whilst useful, was not systematic and covered heterogeneous conditions, so we should be careful about extrapolating too directly to hypermobility.
A small quasi-experimental study from 2010 by George and colleagues, involving 33 people with chronic low back pain, compared graded exercise and graded exposure specifically and found broadly equivalent outcomes for pain and disability (11). Interestingly, reductions in disability were associated with reductions in pain catastrophizing rather than just pain reduction, which brings us back to the Ryum and Stiles finding. And a 2025 quasi-experimental study, albeit very small at just 19 participants with chronic low back pain, found that psychologically informed physiotherapy combined with progressive exposure significantly reduced fear on the Tampa Scale, from an average of 34.55 down to 28.66, and produced improvements in pain and disability that a control group receiving standard physiotherapy alone did not show (13).
The evidence is thin and the samples are small. It would be overstepping to claim this is definitively proven territory. However, the consistency of the signal across different studies, combined with the strong theoretical basis from the fear-avoidance model, means graded exposure is the approach we currently have the best reason to use. For anyone wanting to understand how to build back into movement safely and progressively, the principles in our guide to getting started with exercise in hypermobility are a useful starting point.
Neurocognitive Rehabilitation
This is a relatively new approach in hypermobility specifically, and the evidence is very early, but I think it’s worth discussing because it makes a lot of conceptual sense given what we know about proprioception.
Celletti and colleagues published a 2021 pilot study (4) looking at neurocognitive rehabilitation in hEDS patients with chronic low back pain. This approach focuses on movement awareness, body perception, spatial orientation, and tactile discrimination, so it’s targeting the proprioceptive and body schema deficits directly rather than just building strength or flexibility. The results from this pilot were encouraging: significant reductions in pain (p=0.003), fatigue (p=0.03), kinesiophobia on the Tampa Scale (p=0.003), and pain-related disability (p=0.03). The researchers described this as the first neurocognitive rehabilitation attempt specifically in hEDS.
Now, I want to be very honest here: this was a pilot study with no control group. That means we cannot say these improvements were due to the intervention, as opposed to natural fluctuation, placebo, or other factors. The sample was small. These are preliminary findings that need replication in larger, controlled trials. But the mechanism is sound. If proprioceptive impairment is driving fear and feeding the avoidance cycle, then improving proprioceptive feedback through targeted training is a logical lever to pull.
The Problem with Unsupervised Exercise for Kinesiophobia
Here’s something that doesn’t get said enough: home exercise programmes, even good ones, may not be sufficient to shift kinesiophobia. A 2022 RCT by Spanhove and colleagues, involving 21 people with hEDS and HSD who had multidirectional shoulder instability, found that both exercise programmes significantly improved shoulder function over 24 weeks (9). However, kinesiophobia as measured by the Tampa Scale did not significantly improve, with p=0.12. The researchers themselves suggested that a supervised, multidisciplinary approach may be needed to actually alter kinesiophobia, rather than just functional capacity.
This makes sense when you think about it. The mechanism by which graded exposure works requires the person to actually encounter the feared stimulus and find that the catastrophic outcome didn’t happen. When you’re doing that alone at home, without a practitioner’s presence to provide reassurance and to help you process the experience, the reassurance-gathering is less effective. You’re more likely to stay at the bottom of the fear hierarchy, avoid anything that feels even slightly threatening, and not accumulate the disconfirming evidence your nervous system needs.
This is also why the 2026 pragmatic clinical trial of an online Pilates programme for people with hypermobility, which looked at 420 participants split between a Pilates group and a waitlist control, found that whilst hypermobility impact and body awareness improved significantly (6), kinesiophobia improvement was below the minimum clinically meaningful threshold. The programme improved a lot of things. But fear of movement specifically, when left to an unsupervised home-based format, didn’t shift meaningfully. The Pilates group also had a 32.6% dropout rate before they even started, which is itself potentially a kinesiophobia signal, those with the most fear may have been least able to begin.
Interdisciplinary Approaches
A 2024 study by Hållstam and colleagues compared hEDS and HSD patients to other chronic pain patients in interdisciplinary pain rehabilitation programmes and found that patients with hypermobility conditions benefited from interdisciplinary rehab similarly to patients with other chronic pain conditions (10). This is actually a meaningful finding in a population that often gets told “you’re too complex” or is quietly deprioritised for pain programmes. The study had limitations, it was an observational comparison rather than a dedicated hypermobility trial, but it’s evidence against the idea that those with hypermobility need to wait for some future EDS-specific programme before benefiting from what already exists.
For those with significant psychological components to their kinesiophobia, such as comorbid anxiety, depression, or a history of medical trauma, combined physical and psychological approaches appear to offer the best outcomes. A 2013 pilot study by Bathen and colleagues in 12 women with EDS-HT found that combined physical and cognitive-behavioural therapy showed promise for reducing disability (20). However, we should note that 12 participants, all female, is very preliminary data. A 2023 scoping review specifically looking at psychological interventions for EDS and HSD highlighted CBT and acceptance-based approaches as the most studied options, whilst noting the evidence base remains limited and calling for higher-quality trials (17).
Body Awareness and Interoception: An Emerging Area
There’s a growing interest in approaches that improve interoception, your ability to perceive and interpret signals from inside your own body, as a route to reducing fear around movement. The 2026 Pilates trial mentioned above found a large effect on body awareness (6), and a 2025 pilot study by Kosma and colleagues, involving just six women with hEDS, looked at a performative movement programme designed around community-based activity for EDS (14). They found that participants shifted their relationship with movement from describing it as “dreadful” to finding it enjoyable. Kinesiophobia decreased, body schema improved, and a supportive peer community appeared to reduce fear.
Now, six participants, all female, seven weeks, qualitative design. This is about as preliminary as research gets. Does that mean we should ignore it? No. Weak evidence isn’t the same as negative evidence, and the mechanism it points to is supported from other directions. I’m not going to pretend this is strong evidence. But the direction is interesting: approaches that target the felt sense of the body, not just its mechanical function, seem to do something that purely physical training doesn’t always achieve on its own. There’s a conceptual overlap here with what the research on the pelvic floor in hypermobility tells us about body schema and internal perception, and it connects to the broader picture of proprioceptive confidence.
Likewise, addressing the dysregulation of the autonomic nervous system that often accompanies hypermobility is part of the interoceptive picture, since the way your body registers internal states, including threat, is partly downstream of autonomic function. However this is a complex and still-developing area of research, and we wouldn’t want to overstate how well the mechanisms are currently understood.
Not Everyone Avoiding Movement Is Showing a Cognitive Distortion
This is the part of the article where I want to put on the brakes slightly, because I think the kinesiophobia literature, useful as it is, can sometimes tip into a kind of reductiveness that does disservice to people with hypermobility.
A 2015 qualitative study by Schmidt and colleagues, based on interviews with 11 women with joint hypermobility syndrome and chronic pain, specifically challenged the simplistic application of the fear-avoidance model to hypermobility (15). What they found was complex decision-making around activity that goes well beyond “I’m scared, so I avoid.” Participants were weighing goals, values, consequences, their knowledge of their own body, and multiple contextual factors when making decisions about movement. They weren’t just reacting to fear. They were problem-solving.
This is an important corrective. When someone with hypermobility decides not to go for a long walk because they know from experience that their SI joint tends to go out afterwards and that the recovery cost isn’t worth it today, that’s not kinesiophobia. That’s intelligent body management. When they decide not to carry heavy shopping because their shoulder has a history of subluxating under load, that’s not avoidance in the pathological sense. That’s pacing. When it comes to understanding the difference between reasonable activity modification and genuine fear-driven avoidance, the distinction matters enormously, both for how practitioners approach these patients and for how you, as someone living in this body, should evaluate your own decisions.
Pacing is a genuinely evidence-supported approach for managing chronic conditions, and it’s not the same thing as avoidance. Pacing is strategic. Avoidance is fear-driven. They can look similar from the outside, but the internal logic is different. And if a practitioner tells you that any restriction of activity is kinesiophobia without bothering to understand your individual history and symptom patterns, that practitioner has missed something important. However, the reverse is also true: not all activity restriction in hypermobility is smart pacing. Sometimes it really is fear, and it’s worth being honest with yourself about which category you’re in.
The Schmidt study, whilst limited by its small qualitative sample and all-female cohort, gives language to something a lot of those with hypermobility already know from the inside: the decision-making around movement in this condition is not simple, and it shouldn’t be treated as if it is.
This doesn’t mean kinesiophobia isn’t real or isn’t a problem. It obviously is, given that 93% of one studied cohort scored above the cut-off. But it does mean that the therapeutic goal isn’t to eliminate all movement caution. It’s to understand which fears are disproportionate and are driving unnecessary restriction, and address those, whilst respecting the intelligent adaptations that people have made to manage a genuinely complicated condition.
A Brief Tangent on the Word “Fear”
I want to briefly say something about the language of “fear” that we use so freely in this topic, kinesiophobia, fear-avoidance, fear of falling, and I think there can be a risk that it pathologises an experience that actually makes a lot of sense given what people have been through. Many of those with hypermobility spent years, sometimes decades, being told there was nothing wrong with them, that they were being overdramatic, that the pain wasn’t real, that they just needed to exercise more. When you’ve been dismissed that many times and then finally get a diagnosis that explains why your joints behave the way they do, a degree of protective caution around movement is not weakness or irrationality. It’s a completely reasonable response to a history of being hurt and not helped.
I think that context matters for how we think about and talk about kinesiophobia in this population. The impact of medical trauma in EDS is real and documented, and it shapes how people relate to both their body and to advice about movement. Getting past fear isn’t a simple psychological fix, it’s a process that often has to go through a lot of unlearning, and that deserves patience and proper support rather than just being told to push through it.
What You Can Actually Do: Practical Takeaways
So, where does all of this leave us practically? Let’s try to be concrete.
The first thing is to understand whether what you’re experiencing is genuinely kinesiophobic avoidance or whether it’s intelligent pacing. And honestly, how do you tell the difference? The difference, broadly, is whether the belief driving the restriction is “if I do this, it will damage me” versus “if I do this today, given where I am right now, the cost will outweigh the benefit.” The first is worth examining. The second is often just good management.
If you do recognise a pattern of movement fear that feels disproportionate, or that’s limiting activities you genuinely want to be able to do, the evidence points toward a few practical directions.
Finding a practitioner who understands both the physical and the psychological aspects of hypermobility is, realistically, the most effective route. Not because the physical work doesn’t matter, it absolutely does, but because unsupervised exercise alone is unlikely to shift kinesiophobia significantly, as both the Spanhove RCT (9) and the Pilates trial (6) suggested. A practitioner who can walk alongside you through graded exposure, who can help you design a meaningful fear hierarchy and collect the evidence your nervous system needs, makes a genuine difference. For those also dealing with significant pain flares, the principles around managing EDS flare-ups can help you understand the context in which you’re making movement decisions.
Pain neuroscience education, understanding what pain actually is and why it doesn’t always mean damage, is a useful starting point that you can begin exploring now. There’s a growing body of accessible material on this. We’d suggest looking for resources specifically framed around hypermobility rather than generic chronic pain information, because the proprioception piece, the real physical variability, and the intelligent complexity of your body’s signals mean the generic stuff doesn’t always translate cleanly.
Stability and proprioception work, done carefully and progressively, addresses one of the root drivers of the fear by improving the quality of your body’s position data. This doesn’t mean jumping into a high-load exercise programme. It means targeted work at an appropriate level. Core stability work specifically designed for hypermobility and foot and ankle stability exercises are two areas where this kind of targeted proprioceptive work tends to have good returns. Likewise, running and higher-impact movement for those with hypermobility is something that can be worked towards with the right preparation, even if it seems completely out of reach right now.
If anxiety, depression, or pain catastrophizing are significant parts of your picture, asking for support that addresses those directly isn’t a sign of weakness, it’s evidence-based. The 2023 scoping review by Luong and colleagues (17) and the combined CBT approach in Bathen’s pilot study (20) both suggest that the psychological component deserves its own direct attention, not just as a side effect of getting the physical stuff right. The relationship between childhood adversity and chronic pain is worth understanding if trauma is part of your history, since that context shapes how threat signals get processed in the nervous system, often in ways that make kinesiophobia more stubborn and more treatment-resistant.
If you’re dealing specifically with fear of falling, which Chuchin and Ornstein’s research (2) identified as its own significant predictor of disability, naming that fear specifically and working on it directly is worth prioritising. Balance training, proprioceptive ankle and knee work, and building confidence in your ability to recover from unexpected perturbations are all relevant. It’s a different fear from general movement fear, and it benefits from targeted attention rather than generic reassurance.
Finally: try to access an interdisciplinary programme if you can. The 2024 Hållstam data (10) suggests those with hypermobility do benefit from these programmes, and the evidence is reasonably consistent that no single-discipline approach, whether physical therapy alone or psychology alone, is as effective as addressing the full picture together. We know that the biopsychosocial reality of hypermobility and related conditions means all the threads pull on each other. Addressing them together is simply more efficient.
However, we’re also aware that access to interdisciplinary programmes is not universal, that wait times can be long, that EDS-informed practitioners are still relatively thin on the ground, and that sometimes you have to work with what’s available. If that’s your situation, the best place to start is still building your own understanding, finding even one practitioner who takes you seriously, and being patient with a process that isn’t going to be linear.
A Final Word
Kinesiophobia in hypermobility and EDS is real, it’s prevalent, and it’s more complicated than in most other chronic pain populations. The fear often has legitimate roots. The proprioceptive deficits are real. The history of joints actually doing the thing you’re afraid of is real. The years of being dismissed by practitioners who didn’t understand your condition are real. None of this makes kinesiophobia inevitable or untreatable. But it does mean that the approach needs to be thoughtful, individualised, and honest about the complexity.
If you’ve been struggling with movement fear for a long time, we want you to know that it’s not a character flaw and it’s not something you just “push through.” It’s a very well-documented, very understandable response to a challenging physical situation, and there are evidence-informed paths through it, even if those paths look a bit different for those with hypermobility than they do for the rest of the chronic pain population.
We have a lot more on the physical side of managing hypermobility across the site. If any of the topics we’ve touched on today feel relevant to your situation, it’s worth exploring them more deeply. The overview of Ehlers-Danlos syndrome symptoms, understanding the Beighton score and why it matters, and the comprehensive guide to what actually causes chronic pain in these conditions are all good places to start building the bigger picture.
You’re not broken, and you’re not irrational. You’re dealing with a complicated condition in an under-resourced healthcare landscape, and you’re doing your best. That’s genuinely enough to start from.
— The Fibro Guy Team —
References
(1) Celletti C, Castori M, La Torre G, Camerota F. Evaluation of Kinesiophobia and Its Correlations with Pain and Fatigue in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome Hypermobility Type. BioMed Research International. 2013. https://doi.org/10.1155/2013/580460
(2) Chuchin JD, Ornstein TJ. Fear avoidance, fear of falling, and pain disability in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Disability and Rehabilitation. 2023. https://doi.org/10.1080/09638288.2023.2268520
(3) Vlaeyen JWS, Linton SJ. Fear-avoidance and its consequences in chronic musculoskeletal pain: a state of the art. Pain. 2000. https://pubmed.ncbi.nlm.nih.gov/10781906/
(4) Celletti C et al. Pain Management through Neurocognitive Therapeutic Exercises in Hypermobile Ehlers-Danlos Syndrome. BioMed Research International. 2021. https://pmc.ncbi.nlm.nih.gov/articles/PMC8189767/
(5) Treatments for kinesiophobia in people with chronic pain: A scoping review. Frontiers in Behavioral Neuroscience. 2022. https://pmc.ncbi.nlm.nih.gov/articles/PMC9531655/
(6) Russek LN, Di Bon J, Herbland A, et al. An Online Pilates Program for People with Hypermobility: A Pragmatic Clinical Trial. Journal of Multidisciplinary Healthcare. 2026. https://doi.org/10.2147/JMDH.S564972
(7) The effects of joint hypermobility on strength, proprioception, and functional performance. Scientific Reports. 2025.https://doi.org/10.1038/s41598-025-24199-x
(8) Clayton HA, Jones SAH, Henriques DYP. Proprioceptive precision is impaired in Ehlers-Danlos syndrome. 2015. https://sedinfrance.org/wp-content/uploads/2018/12/Proprioceptive-precision-is-impaired-ClaytonJonesHenriques2015.pdf
(9) Spanhove V, de Wandele I, Malfait F, Calders P, Cools A. Home-based exercise therapy for treating shoulder instability in patients with hEDS/HSD: A randomized trial. Disability and Rehabilitation. 2022. https://doi.org/10.1080/09638288.2022.2076932
(10) Hållstam A, Gerdle B, Stålnacke B, et al. Interdisciplinary Pain Rehabilitation for Patients with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. Journal of Rehabilitation Medicine. 2024. https://doi.org/10.2340/jrm.v56.12431
(11) George SZ et al. Comparison of Graded Exercise and Graded Exposure Clinical Outcomes. Journal of Orthopaedic & Sports Physical Therapy. 2010. https://doi.org/10.2519/jospt.2010.3396
(12) Clark NL, Johnson M, Kottam L, et al. The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review. Rheumatology International. 2023. https://doi.org/10.1007/s00296-023-05298-2
(13) The effects of psychologically informed physical therapy on kinesiophobia and chronic low back pain. Journal of Physical Therapy Science. 2025. https://pmc.ncbi.nlm.nih.gov/articles/PMC12592222/
(14) Kosma M, Erickson N, Hinerman AL, Anderson IA III. EDS-HEART performative movement programme for hEDS. International Journal of Environmental Research and Public Health. 2025. https://pmc.ncbi.nlm.nih.gov/articles/PMC12841307/
(15) Schmidt A, Corcoran K, Grahame R, de C Williams AC. How do people with chronically painful joint hypermobility syndrome make decisions about activity? 2015. https://doi.org/10.1177/2049463714554112
(16) Ryum T, Stiles TC. Changes in pain catastrophizing, fear-avoidance beliefs, and pain self-efficacy mediate changes in pain intensity on disability. PAIN Reports. 2023. https://doi.org/10.1097/PR9.0000000000001092
(17) Luong D, Feldman ECH, Song JZ, et al. Psychological interventions for individuals with EDS and HSD: a scoping review. Orphanet Journal of Rare Diseases. 2023. https://doi.org/10.1186/s13023-023-02799-y
(18) Safety and Impacts of Physical Activity for Individuals Living with HSD/hEDS (Protocol). JMIR Research Protocols. 2026.https://www.researchprotocols.org/2026/1/e80394/PDF
(19) Fletcher EK, Fischer A, Manocha R. Depressive symptoms are highly prevalent and associated with fatigue and pain catastrophizing in HSD and hEDS. Rheumatology International. 2025. https://doi.org/10.1007/s00296-025-05869-5
(20) Bathen T, Hångmann AB, Hoff M, et al. Multidisciplinary treatment of disability in EDS-HT/JHS: pilot study using physical and cognitive-behavioral therapy. American Journal of Medical Genetics Part A. 2013. https://doi.org/10.1002/ajmg.a.36060
