Hypermobility and the nervous system

Flexible is only the part people can see

You might have been the kid who could bend your thumb back to your wrist, or the adult people call “so flexible.” Sometimes that’s all it is. Joint hypermobility simply means a joint can move through a bigger range than is typical. On its own, that isn’t necessarily a disorder, and plenty of people are naturally hypermobile and never have a significant problem because of it.^[2]

For other people it comes with more: pain that keeps returning, joints that feel unstable, injuries that repeat, fatigue, a less precise sense of where your body is, dizziness when you stand, or other difficulties across several areas of health.^[2] So the most useful question isn’t only “are you hypermobile?” It’s “what does that hypermobility mean for you?”

Three names that often get mixed up

Online, you’ll see a few terms used as if they meant the same thing. They don’t, and the difference changes what, if anything, needs attention.

Generalized joint hypermobility means many of your joints move further than typical. It’s a physical finding, not a diagnosis. Hypermobility spectrum disorder, or HSD, means joint hypermobility that causes symptoms but doesn’t meet the criteria for another specific condition. Hypermobile Ehlers-Danlos syndrome, or hEDS, is a specific diagnosis within the Ehlers-Danlos syndromes, a group of inherited conditions that affect connective tissue, the tissue that gives your joints, skin and organs their structure.^[1,2]

The international classification doctors use today draws this line clearly, keeping hypermobile joints as a physical finding apart from hypermobility-related disorders.^[1,2] hEDS is still a clinical diagnosis, which means a clinician makes it by examining you and taking your history. Unlike the other types of EDS, there’s currently no established genetic test that confirms it on its own.^[1]

This matters for everything that follows. Being flexible isn’t the same thing as having a disease, and having a hypermobility-related condition isn’t the same thing as having a “dysregulated nervous system.”

The Beighton score

If you’ve ever been checked for hypermobility, it probably started with the Beighton score. It’s a nine point check of how far a handful of joints move: the little fingers, thumbs, elbows and knees on each side, plus bending forward to put your palms flat on the floor.^[1] It’s a screen rather than a diagnosis, and it only looks at a few joints.^[2]

Here’s a clinician doing the check, if you’d like to see what it looks like:

Your brain needs to know where your body is

Try this. Close your eyes and lift your arm. You don’t need to look to know where it is, whether your elbow is bent, or roughly where your hand is in space. You can probably touch your nose with your eyes closed, too.

That’s proprioception: your sense of where your body is and how it’s moving. It’s part of what lets you walk without watching your feet, hold your posture and coordinate your muscles, and it lets your nervous system make constant small corrections without you having to think about them. Much of the information comes from sensors in your muscles, tendons, joints and other tissues.^[22]

Now think about what happens when those tissues behave differently. If a joint moves further than expected, your nervous system still has to control it. To do that, it needs to know where the joint is, how fast it’s moving, how much force is on it and how stable it is. That’s why proprioception is so interesting in hypermobility.

When the signal is less precise

Research suggests proprioception can be different when hypermobility causes symptoms. When researchers pooled several studies, people diagnosed with benign joint hypermobility syndromebenign joint hypermobility syndromeAn older name for joint hypermobility that causes symptoms, also called joint hypermobility syndrome. Since the 2017 classification, people who had this label would usually be described as having HSD or hEDS. turned out to be less accurate than other people at sensing the position and movement of their leg joints. For the arms, the results were mixed.^[7]

That doesn’t mean every hypermobile person has poor proprioception, and it doesn’t mean proprioception explains every symptom. But it’s one possible piece of the puzzle.

Imagine your ankle, knee or shoulder can move through a bigger range than average, and the information your nervous system gets about it is a little less precise. Your body finds ways to compensate. Your muscles may work harder. You may control movements more deliberately, rely more on your eyes, or feel less secure in certain positions. You may develop protective ways of moving. None of this has to be a conscious choice. Your nervous system is simply trying to solve a mechanical problem with the information it has.

Staying steady can be tiring work

We usually think of effort as the obvious things: lifting something heavy, running, climbing stairs, exercising. But there’s a less obvious kind of effort that’s much harder to see, and that’s the work of staying stable.

Stand on one leg for a moment. Your ankle, knee, hip and trunk are making tiny adjustments the whole time, and you never have to tell a single muscle what to do. Now imagine that holding a position steady takes more frequent or bigger corrections. From the outside, nothing looks unusual. On the inside, it may be taking more work.

That’s one possible reason why some people with symptomatic hypermobility feel so tired even when their day doesn’t look demanding. If that’s you, your tiredness shouldn’t be written off as laziness, poor motivation or a lack of fitness. There may be a real physical cost to staying steady.^[23]

It’s rarely only about the joints

It would be tempting to line it all up in one simple chain:

But bodies rarely work that neatly. Pain changes how you move. The way you move changes which muscles work, and that changes the signals coming back from your body. Fatigue changes movement too. Pain pulls your attention, and attention changes what you notice. Each of these can feed the others.

That’s one reason researchers increasingly see symptomatic hypermobility as a multisystem condition, meaning it can involve several of the body’s systems at once, rather than as a problem with joints alone. Recent reviews keep finding links with muscle and joint problems, autonomic symptoms such as dizziness on standing, digestive problems, anxiety and more, although the quality and consistency of the evidence varies from one symptom to the next.^[19,24]

The map below groups the kinds of symptoms this article covers by body system. Tick the ones you recognize, and it will point you to the part that explains each one.

Pain isn’t a damage meter

If you live with hypermobility and pain, you may have noticed that the pain doesn’t always seem to match what’s going on. That makes more sense once you know that pain in hypermobility doesn’t have to come from one place. It may be linked with:

Several of these can be going on in the same person at once.^[9]

We tend to imagine pain as a direct measure of physical damage: more damage, more pain; less damage, less pain. But the nervous system doesn’t work like a simple damage meter. Pain comes from the incoming signals, from how your nervous system processes them, and from your past experience, your attention, the context you’re in and more.^[26] That isn’t a way of saying pain is psychological. It’s a way of saying the nervous system is part of the biology of pain.

The smoke alarm

There’s a term you may have come across: central sensitization. It sounds complicated, but the idea behind it is fairly intuitive.

Think of a smoke alarm. Normally it goes off when there’s enough smoke to suggest a fire. Now imagine it gets more and more sensitive, until it responds to tiny amounts of smoke. That doesn’t mean the alarm is faulty, and there may well have been a real fire. The problem is that the system has become more responsive.

Something similar can happen with pain. After pain that lasts or keeps coming back, the nervous system can become more responsive to incoming signals. That’s what central sensitization describes: the central nervous system, meaning your brain and spinal cord, reacting more strongly than before.^[27]

Researchers have found signs of this in people with hEDS and related hypermobility conditions, including greater sensitivity to pain and widespread changes in how pain is processed.^[8] In a recent study at a specialist clinic, the people with more signs of central sensitization also tended to have more symptoms across the body, especially pain, fatigue and heart-related autonomic problems.^[18]

It’s an important area of research, but it shouldn’t become another overly simple explanation. Central sensitization doesn’t mean every symptom in hypermobility comes from central sensitization, and it certainly doesn’t mean structural or mechanical problems don’t matter.

Real pain, even when your nervous system is involved

If you’ve ever been told “it’s all in your head”, this part is for you. If your nervous system is involved in producing your pain, that doesn’t make the pain imaginary. Your nervous system is part of your physical body. Your brain is an organ. Your spinal cord is an organ. Pain processing is a biological process.

You can have genuine joint instability, genuine tissue problems, genuine injuries and genuine pain, and also develop changes in how your nervous system processes pain. These things can exist together. Knowing that gives you a much more useful way to think about your pain than being forced to choose between “it’s physical” and “it’s psychological.”

The part of your nervous system that runs itself

If you’ve ever felt your heart pound as you got up, or had to hold on to the kitchen counter until the dizziness passed, this part is about you. It’s probably where the link between hypermobility and the nervous system is strongest.^[3,4]

Your autonomic nervous system runs the things that happen without you deciding them. It helps regulate:

You don’t tell your blood vessels to tighten when you stand, and you don’t think “my heart should speed up a little now.” Your autonomic nervous system makes those adjustments for you, and that becomes important the moment you get up.^[28]

What standing up asks of your body

Getting up from a chair seems too ordinary to think about. For your body, though, it’s a series of quick adjustments. Gravity pulls blood toward the lower part of your body, so your circulation has to compensate. Blood vessels tighten, your heart rate changes, your blood pressure is adjusted and blood flow is redistributed. Your autonomic nervous system coordinates much of this, and for most people it happens so smoothly that they barely notice.^[29]

If you have orthostatic intolerance, which means your body struggles with being upright, standing can bring real symptoms.^[4,29] They can include:

Suddenly, something as ordinary as standing in line can be physically demanding. The drawing below steps through what standing asks of your body, and how it can feel when your body struggles to keep up.

POTS, and why it can look like panic

One form of orthostatic intolerance is postural orthostatic tachycardia syndrome, usually called POTS. Tachycardia means a fast heart rate. In POTS, your heart rate rises too much when you move into an upright position, together with the typical symptoms of orthostatic intolerance. POTS is a medical condition.^[30,31]

That’s worth saying clearly, because some of its symptoms look remarkably like anxiety: a racing heart, trembling, sweating, shortness of breath, dizziness, feeling faint, and a sense that something is wrong. Those sensations can happen during panic.^[32] They can also happen because of a physical problem with how your body adjusts to being upright.^[31] If you’ve been told it’s just nerves, that difference matters.

How often POTS and hypermobility go together

So how often do they go together? That depends a lot on which study you read. When one recent review gathered the research on people with EDS or POTS, the overlap ranged enormously from one study to the next. The chart below shows just how wide!^[6]

What the studies do agree on is that POTS and EDS or hypermobility often occur together.^[4,5,6] What can’t be said is that everyone with hypermobility has POTS, or that hypermobility always causes it.

Researchers are looking at several possible explanations, including how blood vessels behave, blood pooling in the lower body, autonomic control, blood volume and nerve-related mechanisms.^[3,31] There may not be one single mechanism. Different people may arrive at similar symptoms by different routes.

How a racing heart turns into fear

Picture it. You stand up, and your heart suddenly races. You feel lightheaded, your chest feels strange, and you become aware of your breathing. Your brain now has a problem to solve: what’s happening?

Your brain is always trying to interpret signals from your body. If a sensation is unfamiliar or frightening, it may read it as a threat, and that reading can raise your arousal further. Your heart may beat faster, your muscles tense, your breathing changes and your attention locks onto your body. Now there’s even more to notice. You think “why is my heart beating even faster?”, which raises the fear, which raises the checking, which makes the sensations more noticeable still.^[33]

The loop below shows how that can build. It’s a genuine mind-body process. But it doesn’t mean anxiety caused the original physical symptom.

From “that’s strange” to “maybe I shouldn’t go out”

Imagine your heart races every time you stand. At first you just find it strange. Then it happens while you’re out. You get dizzy, and you get frightened. Before long, the thoughts start:

The original symptom may have been completely real. But now a psychological layer has grown around it. You might start avoiding the places where it happened, and the avoiding can make the fear stronger, because your nervous system learns “that situation is dangerous.” Slowly, life can start to organize itself around avoiding it.^[34] This is how a physical symptom can become psychologically disabling without ever being psychologically imaginary.

The supermarket problem

Your brain is a prediction machine. It learns from experience, and if a situation keeps coming before pain, dizziness, instability or another frightening sensation, your brain starts to expect it.^[35]

Say you’ve felt dizzy in the supermarket a few times. Soon, just walking in makes you anxious, and you start scanning yourself. How do I feel? Is my heart okay? Am I getting dizzy? Where’s the nearest place to sit? The supermarket has become linked with danger.^[34]

That’s a very normal kind of learning. The difficulty is that the protective response can grow bigger than the original problem, until you avoid the supermarket even on days when your body might have managed it.

Paying attention isn’t the same as imagining it

If your body has surprised you with pain, dizziness, instability or other symptoms again and again, it makes sense to pay attention. If a sensation has been followed by something frightening before, noticing it early can even feel protective. The trouble starts when watching your body becomes constant, which is sometimes called hypervigilance.^[36]

At that point, the attention itself becomes exhausting. That’s one of the places where psychological help can be useful. Not because the sensations are imaginary, but because your relationship with them has become threatening.

Feeling the inside of your body

There’s a name for how you sense what’s going on inside you: interoception. It covers how signals from inside your body are sensed, processed and interpreted: your heartbeat, your breathing, hunger, thirst, temperature, nausea, muscle sensations and changes in your internal organs.^[37]

We don’t experience emotions only as thoughts. We feel them in the body too. Anxiety, for example, can come with a racing heart, a tight chest, butterflies in the stomach, muscle tension, changes in breathing, sweating and restlessness. The body is part of the emotional experience.^[38]

Researchers have also found links between joint hypermobility, anxiety and the way body signals and emotions are processed, including differences in the brain areas that handle information from the body.^[10,39]

It helps to be careful here, because interoception isn’t simply “body awareness.” You can be very aware of your heartbeat without knowing why it’s beating faster. You can notice sensations intensely without reading them accurately.^[40] And you can be barely aware of some signals while still having significant symptoms. So what matters is less whether you’re “in touch with your body” and more how your body’s signals are detected, interpreted and given meaning.

Why anxiety and hypermobility show up together

Sleep sits in the middle

Sleep can affect almost everything else. Pain can make it harder to sleep, and poor sleep can make you more sensitive to pain.^[46] Fatigue can mean you do less, and doing less can change your sleep. Anxiety can make it harder to fall asleep, and poor sleep can make emotions harder to manage.^[47]

So asking “is my sleep causing my pain?” may be less useful than asking how your sleep, pain, fatigue and mood are affecting one another. Complex symptoms often work in loops rather than straight lines. If nights are a big part of it for you, it’s worth reading about how busy your brain is while you sleep.

Brain fog

“Brain fog” isn’t a diagnosis. It’s a description people use for things like:

People with symptomatic hypermobility often describe these, and again there may be several contributors.^[25] Pain demands attention. Fatigue drains your mental resources. Poor sleep affects concentration and memory. Anxiety can narrow your attention toward possible threats.^[48] Autonomic symptoms can make thinking harder, especially when you’re upright.^[49] And constantly monitoring your body takes mental energy.

Imagine trying to follow a conversation while also wondering whether your heart is beating too fast, whether you’re getting dizzy, whether your knee feels unstable and how much energy you have left. That’s a lot competing for your attention!

Headaches and migraine

Headaches and migraine are often reported by people with hypermobility-related conditions. One review found that migraine is common in symptomatic hypermobility, although estimates vary a lot between studies. Its authors also stressed looking at the different possible causes of a headache, rather than assuming every headache in a hypermobile person works the same way.^[15]

So the right conclusion isn’t “hypermobility causes migraine.” Migraine is a complex neurological condition that’s also very common in people without hypermobility.^[50] The more useful conclusion is that when several symptoms turn up together, they deserve to be understood as part of your whole picture rather than treated as unrelated problems.

The gut

At first, digestion might seem to have nothing to do with joints. But your gut is heavily regulated by the nervous system,^[51] and digestive symptoms are increasingly recognized in hEDS and HSD.^[17]

When one recent review pooled the earlier research, more than six in ten people with hEDS or HSD reported long-term gut symptoms. Disorders of gut-brain interaction, where the gut and brain don’t communicate as smoothly as they should,^[52] were among the problems commonly reported alongside them, together with reflux, chronic fatigue, migraine and orthostatic intolerance. The authors were careful to say the studies varied widely, that the quality of the evidence is low, and that the findings should be read with caution.^[24]

It’s another reminder that the nervous system isn’t only in charge of thoughts, emotions and movement. It’s involved throughout the body.

Body and mind aren’t separate systems

You may have sat across from a doctor and felt you had to pick a box: is this physical, or is it mental? This may be the central idea of the whole article: biologically, the line between the two is much less clear than those boxes suggest.

Pain changes mood, and mood changes how pain feels. Stress changes autonomic activity, which creates sensations in the body, which affect emotion. Sleep affects pain and pain affects sleep. Fear changes how you move, how you move changes your physical conditioning, your conditioning affects fatigue, and fatigue affects mood. These aren’t abstract ideas. They’re real processes in your body.

Trauma, and the myth of a hypermobile personality

Trauma is another area where online discussions get oversimplified. Psychological trauma doesn’t cause hEDS. It doesn’t create the connective-tissue differences behind an inherited connective-tissue disorder.^[1]

At the same time, trauma can affect pain, sleep, autonomic arousal, how you perceive threat, attention and how you manage emotions.^[32,54] And living with chronic physical symptoms can be hard in itself. Repeated injuries, medical procedures, pain, uncertainty, losing things you could once do, not being believed, changes in relationships and work, and fear about the future can all add to distress.^[12,42] So the better description is that physical illness and psychological experience can influence each other, not that trauma caused the illness.

It also needs saying that there’s no single psychological profile of a hypermobile person. Some people with hypermobility have anxiety and some don’t. Some have trauma histories and some don’t. Some have significant autonomic problems and some don’t. Some have severe chronic pain and some have little or none. The research shows links, and higher rates of certain difficulties in some groups.^[12,16] It doesn’t justify turning those links into a personality type.

What “nervous-system dysregulation” actually means

You’ll find this phrase everywhere: “your nervous system is dysregulated,” “your body doesn’t feel safe,” “you’re stuck in fight-or-flight,” “regulate your nervous system.” Some of the ideas underneath this language can be useful. But it’s often so broad that it’s hard to know what’s actually being described. Is it:

These aren’t interchangeable. Orthostatic hypotension, for example, is a drop in blood pressure when you stand,^[30] which is a different thing from anxiety or chronic pain. There’s no single medical diagnosis called nervous-system dysregulation, and there’s no single exercise that “regulates your nervous system” in a way that resolves all of these. That matters with hypermobility, because genuine autonomic disorders can need medical assessment and treatment.^[3,31]

The vagus nerve, and what the evidence supports

The vagus nerve has become a bit of a celebrity in wellness circles, and it really is important. It’s a major part of the parasympathetic nervous systemparasympathetic nervous systemThe branch of the autonomic nervous system associated with rest, digestion and recovery. It works alongside the sympathetic branch, which prepares the body for effort, rather than taking turns with it., and it carries messages between the brain and organs including the heart and the gut.^[28]

But online explanations often make it sound much simpler than it is. You may have heard that it works like a switch between “safe” and “unsafe”, or that almost any symptom comes from a vagus nerve that isn’t “activated” enough. The real neurobiology is far more complicated.

This is also why it’s worth being careful about treating polyvagal theorypolyvagal theoryA theory developed by the neuroscientist Stephen Porges that links feelings of safety and threat to different branches of the vagus nerve. It’s widely used in therapy, and several of its central claims are disputed. as established fact. It has been influential in psychotherapy and trauma-informed practice, but several of its central claims remain scientifically disputed. Recent peer-reviewed papers have strongly criticized its claims about anatomy and evolution, and others have been published defending it.^[20,21]

None of this means slow breathing, relaxation, time with people you trust or mindfulness are useless. Quite the opposite: they can help!^[55,56] We just don’t need claims that go beyond the evidence to explain why. If you’d like a place to start, slow breathing is easy to try in two minutes.

You don’t need to calm your nervous system every time you feel something

A nervous system that switches on hasn’t necessarily gone wrong. Your heart should beat faster when you exercise. You should get more alert when something needs your attention; that’s your stress response doing its job. Fear is sometimes the right response. Pain protects you. Sympathetic activationSympathetic activationActivity in the branch of the autonomic nervous system that prepares the body for effort or for something that needs attention: heart rate rises, breathing quickens, muscles ready themselves. is normal.

The goal isn’t to be calm all the time. A system that never switched on would be just as much of a problem as one that never settled. What matters is flexibility.^[57] Can your system respond when something is asked of it, adapt when things change and settle back down when that’s appropriate? Can you notice a sensation without jumping to catastrophe, and respond to your body without being completely run by it? That’s a far more useful way to think about regulation.

Same heartbeat, different meaning

A sensation isn’t the same as the meaning you give it. Your heart beats faster; that’s the sensation. If you read it as “I’m exercising,” you respond one way. If you read it as “I’m having a heart attack,” you respond another. The sensation may be identical. The meaning changes the emotional experience.^[33]

That doesn’t mean interpretation creates all symptoms. It means interpretation can shape what happens next. It matters most when you’ve had unpredictable symptoms, because your brain has a history. It remembers what happened last time, and that history shapes what it predicts this time.

When protection turns into restriction

Many habits that become a problem in long-term illness start as sensible protection. You avoid a movement because it once hurt. You sit down because standing made you dizzy. You check your heart because it has raced before. You cancel plans because you don’t know how much energy you’ll have. At first, these can be exactly the right thing to do.

But sometimes protection slowly turns into restriction. So a more useful question than “are you avoiding things?” is “is this avoidance still serving you?”^[36]

What therapy can and can’t do

If you’ve spent years being told it’s anxiety, the word “therapy” might make you wary, and that’s understandable. So it’s worth starting with the limits. Psychotherapy can’t stabilize an unstable joint. It can’t replace treatment for POTS, repair connective tissue, or make a migraine disappear through positive thinking. It should never be offered as a substitute for proper medical care.

So what can it do? Quite a lot! Therapy can work with the psychological processes that grow around a physical condition. It can help you understand fear, recognize avoidance, question worst-case thoughts, work through grief, build a relationship with your body that feels less like a fight, adapt to uncertainty, and reconnect with activities and values that illness has pushed aside. And sometimes, perhaps most importantly, it can be a place where you don’t have to prove your symptoms are real before you’re allowed to talk about how hard they are.

What the research says about therapy

One picture, many directions

At this point it can help to step back. Rather than one straight line from cause to effect, it’s more accurate to picture several systems influencing one another all the time: your connective tissue, the mechanics of how you move, the signals from your body, pain processing, your brain and spinal cord, your autonomic nervous system, what you live through day to day, how you respond psychologically, and what you end up doing.