Why Am I in So Much Pain with hEDS/HSD? Now We Can Actually See Why

If you live with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD), your pain and instability involve several things happening together.

Among those are visible changes in your fascia, muscles working overtime to hold unstable joints in place, and a nervous system that has learned to turn up its own volume on pain.

New ultrasound research has finally made the fascial piece visible, showing measurable thickening and densification in connective tissue that used to be invisible on any scan.

The Integral Movement Method (IMM) is built to work with these parts of the picture at once.

Key Takeaways

Ultrasound research has made fascial changes in hEDS/HSD visible for the first time, showing thickened, less mobile connective tissue known as fascial densification.
Muscles often grip and tighten as a protective response to joint and fascial laxity, creating a tight but weak pattern.
Pain in hEDS/HSD can come from tissue changes, nerve involvement, or a sensitized nervous system, often more than one at once.
The Integral Movement Method works with fascia, muscle guarding, and nervous system sensitization together.

What’s actually happening in your fascia?

Fascia is the connective tissue network that wraps around and connects every muscle, organ, bone, and nerve in the body, giving it structure and letting tissues glide smoothly against each other as you move.

In hEDS and HSD, the deep fascia becomes thickened and loses that normal ability to glide, a change researchers call fascial densification. Diagnostic ultrasound has finally made it visible for the first time, one of the first times what this community has been feeling has also shown up as something measurable in the body.

I’ve spent years explaining this community’s pain to people who could see nothing wrong on a scan. One of the worst aspects of living with an invisible illness is that comment “you’re fine – your scans are normal”. And then we get dismissed with no clear answers. This research changes that conversation.

When fascia doesn’t glide well, it can’t disperse mechanical load properly, and that stress gets passed on to the joints instead, which may be part of why instability, subluxations, and pain that’s hard to pin down show up together so often.

Fascia is also rich in pain-sensitive nerve endings, so thickened, stiffened fascia can irritate those too.

A 2025 review by Dr. Wang and colleagues proposes that fascia’s maintenance and repair process may not work correctly in hEDS and HSD, based on small-scale tissue biopsy studies rather than the imaging above (1): cells behave abnormally, and the material that gives fascia its structure becomes disorganized instead of staying strong and flexible.

The review connects this disruption to symptoms often treated as separate: joint instability, chronic pain, and proprioceptive difficulties among them, since fascia does several jobs at once: helping transmit force, housing pain-sensing nerves, and housing the sensors that tell your brain where your body is in space (1). That’s the review’s synthesis across several studies, not a single proven finding.

Why do your muscles feel tight when your joints are loose?

Muscles tighten in hEDS and HSD because they’re compensating for joints and ligaments that can’t provide enough support on their own. I call this false stability, and it’s the answer to a question I hear constantly: if my joints are so loose, why do I feel so tight?

Our goal with movement is to build true stability – one that relies on whole-body organization as opposed to tightness, guarding, and rigidity.

The body recruits the big global muscles to do a stabilizing job they were never designed for. They end up overworked, fatigued, and tight but weak, while the deeper stabilizing muscles that should share the load stay underused.

A fatigued muscle will always let you down – that’s why it is so important that we work on the whole body muscle tone and balance so that all the muscles do the jobs they were designed for.

Otherwise, it becomes a cycle: muscles tighten to protect lax joints, that tightness feels restrictive, we want to stretch for relief, and the stretch can destabilize the joint further, starting the cycle again. Breaking this cycle isn’t about more stretching. It’s about teaching the deeper stabilizing muscles to do their job.

There’s another mechanism worth naming here too. Some research describes thickened fascia taking over more of the load-bearing work itself, which can mean the muscles around it get used less over time (1).

That’s a different picture from muscles gripping and overworking, and researchers are still working out how both patterns fit together in a hypermobile body. Either way, the muscles need to be retrained, whether they’ve been overworking or underworking to get there.

Why does this hurt more than it “should”?

Pain in hEDS/HSD comes from three distinct mechanisms, and most people experience some combination of them. Dr. Leslie Russek, scientific advisor to The Zebra Club, calls them nociceptive, neuropathic, and nociplastic pain.

Nociceptive pain comes from actual or potential tissue stress, the kind you’d expect from a subluxation or an overstretched ligament. Neuropathic pain comes from irritation or compression of the nerves themselves, similar to what happens in carpal tunnel syndrome.

Nociplastic pain works differently: it comes from the nervous system itself becoming more sensitive, reacting more strongly to input that wouldn’t normally hurt, sometimes without any clear trigger at all.

This third type is closely tied to central sensitization, where the nervous system’s alarm system turns up its own volume.

It’s a real physiological change. For many people with hEDS/HSD, a single flare can involve all three pain types layered together, which is part of why pain here can feel disproportionate to what’s actually happening in the tissue, and why it can be so hard to explain to someone else.

Fascial change and muscle guarding explain a lot about where this pain originates. But a nervous system that has learned to sound the alarm more easily will amplify signals coming from stiffened fascia or overworked muscles, which is part of why addressing only one piece of this picture often isn’t enough.

That’s why nervous system regulation comes first in the IMM. We work on safety first, stability and strength after that has been established or calmed down.

A 2026 study of 150 adults with hEDS/HSD found that central sensitization was closely tied to three things: fatigue, pain, and cardiac dysautonomia, the autonomic symptoms common in this community (2). Anxiety and depression didn’t show that same link. This points to something physical happening in the body, not just mood.

How does IMM work with all of this at once?

IMM works with fascia, muscle guarding, and nervous system sensitization together by sequencing six principles in a deliberate order, built for a hypermobile body. Each principle addresses a different part of the picture above.

Breath comes first: regulation before progression. A nervous system in alarm can’t build capacity, so calm comes before any movement progression begins, directly addressing the sensitization piece described above.

Relaxation follows: sequence before intensity, since hypermobile bodies often hold chronic tension as compensation for joint instability, and moving in the wrong order can increase pain.

Proprioception is next: awareness before repetition. Joint hypermobility affects the sense of where the body is in space (this is proprioception), and fascial change compounds that further, so IMM rebuilds that awareness before adding repetition.

Stability follows directly: alignment before load, targeting the muscle guarding pattern by teaching a joint to hold itself in place before resistance is added, since loading too soon is a common source of flares.

Balance and Posture complete the sequence: control before strength, and function before performance, keeping the focus on getting through daily life with energy left rather than chasing a performance benchmark.

This sequence is built for a body where fascia, muscles, and nervous system are all part of the same picture. In participant-reported outcomes, 88.2% would recommend the IMM for hypermobility. Explore the method to see how the six principles work together in more depth.

Ready to work with your body instead of against it?

Your pain and instability aren’t one thing, and they were never something to just push through.

Most exercise and physical therapy advice treats fascia, muscle guarding, and a sensitized nervous system as separate problems, or doesn’t address them at all. The Zebra Club was built around the opposite idea: that these parts of the picture need to be worked with together, in the right order, for a hypermobile body.

Ready to start? Join The Zebra Club and begin with a foundational session built around exactly this, breath, proprioception, and stability before anything else.

References

You Don’t Have to Earn Rest: What Hypermobility and hEDS Taught Me About Listening Earlier

Many of us with hypermobility and EDS have asked ourselves some version of this question: Am I bad enough today to justify stopping?

Perhaps you’ve been taught to push through pain. Or you try to keep going, or to only rest when you are completely exhausted. You tell yourself you will rest tomorrow or after just one more task.

But for many people living with hEDS and HSD, that moment is often too late. One of the most valuable lessons I have learnt personally and through working with our community is that rest isn’t something you have to earn.

Rest can be a useful and essential tool. If we can learn to recognize the early signs that the body is asking for a different approach, it can be transformational.

That’s one of the reasons I created The Zebra Club – to help the community learn how to work WITH their bodies rather than constantly feeling in a battle with themselves.

Key takeaways

Rest is not something you earn by reaching a certain level of exhaustion. Feeling “not quite right” is already enough reason to slow down.
People with hEDS and HSD expend more energy than most just to get through a normal day, which means overriding rest signals adds load to a system that is already stretched.
Responding to early warning signs before you hit the wall, including increased tension, brain fog, or feeling wobbly, is more effective than waiting for a full flare.
In the Integral Movement Method, rest and movement are not opposites: rest means finding the level of movement your body can receive right now.
The Zebra Club’s Rest and Restore programme was built for the “not quite right” days: not a full workout, not complete rest, but gentle restorative movement that keeps fascia hydrated and supports nervous system regulation.

The Question Many of Us With Hypermobility Ask Ourselves

I had a real dilemma recently, and maybe you can relate. I think it is a quiet question that many of us might have with ourselves: Am I sick enough? To cancel? To rest? To not push through today? It is an uncomfortable place.

You’re not at your worst, so you tell yourself you should keep going. You may try to minimize that feeling or compare it to what you did last week.

Recently, I had a cold that turned for the worse, but I caught myself thinking, ‘Other people have colds, and they carry on.’ I’ve done this before, of course.

The first time I had pneumonia in 2009, I saw a consultant on a Monday. He said I needed to come into the hospital for a stay. My first question was ‘Will I be ready by Friday, as I have a course booked?’ I really wanted to start my Pilates training at Polestar.

He calmly looked at me and said, “Jeannie, you are not well enough just now for anything. The course can wait.” I was quite prepared to push through.

Looking back now, I can see this story wasn’t just about having pneumonia. It reflected a pattern I’d developed over many years living in a hypermobile body.

People who live with hEDS or HSD often become experts at pushing through discomfort because pain, fatigue and instability are part of daily life. We become so used to functioning despite symptoms that it can be difficult to recognize when the body genuinely needs to slow down.

Why Pushing Through Is Harder on a Hypermobile Body

People with hypermobility often start the day using more energy than they realise. Our muscles work harder to stabilize joints, our nervous system is constantly processing more sensory information, and many are also managing conditions like POTS, MCAS, and fatigue.

What looks effortless on the outside may require a huge amount of effort behind the scenes.

This is why ‘push through’ messaging can be so harmful. Repeatedly overriding the body signals and not practicing pacing can contribute to a boom-and-bust cycle. Over time, repeated booms and busts can make the nervous system more sensitized, and recovery takes longer.

I used to push through my pain and fatigue. It was really hard for me to accept that resting did not mean I was weak or that I wasn’t trying hard enough. I felt like a failure, to be honest.

Listening to your body doesn’t mean avoiding challenges or becoming fearful of movement; it means recognizing the difference between effort and pushing beyond your current capacity.

Practices that encourage rest are an integral part of The Zebra Club design. It was not an afterthought or an add-on, but rather something encouraged. There is a range of soothing meditations, programs that emphasise rest and recovery, and a community that helps support you.

What Your Body Is Telling You Before a Flare

My question is: What if we stopped measuring our need to rest against how ‘bad’ we feel?

What if feeling ‘not quite right’ was already enough? Rest isn’t something you earn by reaching a certain level of exhaustion or illness. It’s something we need to listen to. The earlier we listen, the better.

For many of us with symptomatic hypermobility, the earliest signs we need to slow down aren’t dramatic.

There might be more muscle tension, increased headaches, finding it harder to concentrate, feeling wobbly or dizzy, breathing more shallowly, or noticing movements feel harder than usual. These are not signs of failure, but vital pieces of information.

Try not to dismiss these early signs. For many years, I worked 6 days a week with daily headaches. My body was clearly trying to tell me something. I ignored it most of the time.

Maybe you also tell yourself you will rest on the weekend or run one more errand and then rest. I have found it is best not to wait until the point when the body leaves us no choice, and we crash.

Listening earlier doesn’t mean you have to stop every time you feel uncomfortable. It means becoming curious about the messages your body is sending you before they become impossible to ignore – like my pneumonia.

This can look like taking short breaks, changing your plans, choosing a gentler movement session, lying supine and breathing or simply closing your eyes for a moment and taking a long, deep breath.

These may seem like small things, but over time they can change the pattern from constantly reacting to flares to preventing them from escalating.

This is something we practice together every day in The Zebra Club. We learn to recognize the quieter signals, respond with curiosity instead of guilt, and make movement decisions that support long-term health and sustainability.

Why Rest Looks Different When You Have Hypermobility or EDS

When we hear the word rest, we may imagine stopping completely – lying on the sofa, staying in bed or avoiding movement altogether. Sometimes this is exactly what we need. But sometimes, complete inactivity isn’t the most restorative option.

Our joints rely heavily on our muscle tone for stability. Connective tissue responds well to gentle movement, and our nervous systems can respond to calm sensory inputs. Long periods of inactivity can leave us feeling more unstable.

Rest is more than doing nothing. Sometimes it means slowing your pace; sometimes it means gentle mobility instead of strength training.

The question is, what kind of movement can my body tolerate today? This is at the heart of the Integral Movement Method. Rather than seeing rest and movement as opposites, we see them as partners.

The right movement at the right time at the right intensity. The Zebra Club has options and solutions for this. We can calm the system, improve body awareness and reduce unnecessary tension, supporting recovery.

This philosophy is the reason behind our Rest & Restore program in The Zebra Club. It was designed for those days when your body needs kindness rather than challenge. This program can help you stay connected to movement in a way that supports healing.

Restorative Classes for Hypermobility: What to Try When You Need to Rest

So, when I wasn’t feeling well recently, like I mentioned above, I listened. I cancelled plans, I rested, I slept, I said no to things. I think this is the way to sustainable progress.

That’s why I created so many restorative resources and classes for The Zebra Club. These gentle classes support our need to rest and restore. We can still rest, but keep the fascia hydrated. Check out these classes if you are feeling or resisting the urge to rest.

One of the reasons I created these restorative classes is that I realized there was very little support out there for the days in between. All we are told is to get stronger and go exercise.

But what about the other days we have? Not the days when you are ready for a full workout, and not the days that you are on total rest – but for those ‘not quite right days’.

Inside The Zebra Club, we’ve deliberately created classes exactly for those moments. These offer gentle, restorative movements so that you don’t have to choose between pushing through and stopping completely.

Here are a few classes that live inside The Zebra Club. If you’re already a member, you can access them now. If you’re not yet a member, consider this a look at what’s waiting for you.

Rest & Restore Program — a collection designed for days when your body needs to step back without stopping entirely

Movement Meditation of Softness — a guided class combining breath and gentle movement to settle the nervous system and a member favorite.

Deep Restorative Relaxation Bolster Class — a supported, prop-based class for when even sitting upright feels like too much.

Post Viral/Illness Recovery — a gentle movement class specifically designed for the recovery window after illness, including colds and viral episodes, but works at any time to soothe the nervous system and get the tissues moving.

These gentle classes support your body’s need to rest and restore. They combine calming breathwork, mindful movement and gentle mobility to help regulate the nervous system, ease muscle tension and keep your fascia hydrated.

If you’re feeling ‘ not quite right’ or resisting the urge to rest, these classes are exactly where I’d encourage you to begin.

If you’re ready to stop fighting your body and start working with it, The Zebra Club was built for exactly that. Join us today.

Already a member? Head straight to the Rest & Restore program.. It’s waiting for you on a day just like this one.

Working WITH a Flare-Up: A Gentler Way to Respond to Pain, Tension, or a Subluxation in Hypermobility, hEDS, and HSD

When a musculoskeletal flare hits, whether it’s a pulled muscle, a subluxation, or a sudden spike of tension, there are usually two instincts.

One is to target the painful area directly: we move it more, stretch it, or target it with exercises to fix it. The other is to stop moving altogether. Neither actually helps.

Overworking the area can aggravate it further, and going completely still lets fascia turn sticky and stiff, which often means more pain, not less.

I’ve learned through the years the faster path to relief is down-regulating the whole nervous system first. In The Zebra Club, we call this working WITH a flare instead of working THROUGH it.

This is built on the same foundation as The Integral Movement Method: instead of pushing into what hurts, let’s step back and create conditions for the body to turn down the pain dial.

It makes sense that we would want to target the part of the body that is suddenly tender or protect it completely.

But in the acute phase, working with your body, not against it and not by avoiding it, is usually the faster way through.

Key takeaways

A flare, whether it’s a pulled muscle, a subluxation, or sudden tension, isn’t something to push through or wait out completely.
Down-regulating the nervous system, not targeting the painful area, is what actually speeds up recovery.
Total stillness isn’t safe either: fascia can stiffen and turn “sticky,” often meaning more pain once you move again.
Working WITH a flare means stepping back, keeping movement small and gentle, and using The Zebra Club’s resources alongside your regular care.

What’s the difference between working through a flare and working with one in a hypermobile body?

A pain flare is a sudden, temporary spike in pain, tension, or protective guarding, often triggered by a pulled muscle, a subluxation, or overexertion.

Working THROUGH a pain flare means pushing against pain, zeroing in on the painful area, trying to stretch it out, doing targeted exercises, or moving that specific joint more to “work through” the discomfort.

Going still means stopping movement altogether: staying as motionless as possible until the flare passes. It feels like the safe choice, but fascia doesn’t do well with total stillness. It can stiffen and turn “sticky,” leading to more pain.

Working WITH a pain flare means stepping back, and partnering with your body to calm your entire system, and creating the optimal conditions for your body’s natural healing.

I have found working WITH a flare is the approach that gets you back to baseline the fastest.

Why does calming the nervous system help more than targeting the painful joint?

Here’s what many people don’t realize: quicker resolution comes from down-regulation, not from targeting the problem area.

That protective increase in tension we feel may not just be a local mechanical issue, but a nervous system response designed to protect us. For some of us, this can be related to a more sensitized nervous system — one that’s become primed to sound the alarm more easily.

When we focus on breath and relaxation work, we actively reduce the protective tension that our nervous system creates during an acute flare.

Remember, everything in your body is connected. That shoulder pain isn’t just about your shoulder; it’s about how your entire system is responding to protect you.

Our members feel this directly. Tanya, a Zebra Club member, put it simply:

“I also did Jeannie’s meditations every day. I needed to calm my nervous system first.” — Tanya’s transformation with The Zebra Club

So what does working WITH a flare actually look like in practice?

What actually helps with pain relief during a subluxation or flare in hEDS and hypermobility?

Once you understand why down-regulation works, there are some simple practical shifts you can try.

Step back from the painful area instead of targeting it directly. Resist the urge to stretch it out or work it more.

Keep movement small and gentle. Don’t stop moving altogether. A few small, deliberate movements, even lying in bed if needed, keep fascia from stiffening further without pushing the area past what it can handle right now.

Reach for gentler tools built for this moment, like The Zebra Club’s audio meditations or classes in Mindful & Stress and Sleep & Fatigue.

None of this replaces medical care, bracing, taping, heat, or other support your body needs. These shifts work alongside standard care, not instead of it.

Our members feel the difference directly. Tanya, a Zebra Club member, put it this way:

“I began to learn about fascia and how this new exercise approach was helping my fascia to glide.”

How can The Zebra Club help during a flare-up?

The Zebra Club is built on mindful movement. For a flare specifically, a few resources are worth going to first:

For a structured, longer-term response, the Pain & Flare Recovery Structured Pathway is a step-by-step way to work with a flare over time, built for pain flares, fatigue crashes, and the loss of confidence that follows a setback. This pathway isn’t the right starting point for a new or acute injury. If you’re dealing with sudden severe pain, significant swelling, or a suspected dislocation or fracture, see a doctor first.

In Calm Your Mind, guided meditation built for a hypermobile nervous system can help, including Jaw and Throat Tension Release or Release Head, Neck, and Shoulder Tension, a member favorite.

In Pain management, you can find movement classes like Relieve Coccyx Pain, Gentle Spinal Movement, and Coat Hanger Pain, which are built for moments like this.

In Mindful & Stress, movement classes like Movement Meditation of Softness, Fascial Release, and Stomach Comfort are member favorites.

Everything above is available inside The Zebra Club. If you’re not a member yet, join The Zebra Club to get access.