Hypermobile Ehlers-Danlos Syndrome (hEDS): Understanding Your Body and Taking Back Control
- Ben Proctor
- 17 hours ago
- 10 min read
If you've recently been told you have hypermobile Ehlers-Danlos syndrome (hEDS), or you've lived with it for years, you may have experienced a mixture of relief and frustration. Relief because someone has finally given a name to what you've been experiencing. Frustration because, after finally getting a diagnosis, you may have been left wondering, "What do I actually do now?"
Many people tell me they have spent years feeling as though they weren't believed. Blood tests are normal. Scans don't explain the amount of pain they're in. Friends and family often say, "But you look well."
Living with hEDS can be exhausting, physically and emotionally. The good news is this: although we can't change the underlying connective tissue, there is a great deal we can do to improve your symptoms, your confidence and your quality of life.
My aim with this article is to help you understand why your body behaves the way it does and, more importantly, what you can do about it.
What is hypermobile Ehlers-Danlos syndrome?
Hypermobile Ehlers-Danlos syndrome is a lifelong condition affecting the body's connective tissue.
Connective tissue is found almost everywhere. It provides support and structure to joints, muscles, tendons, ligaments, skin and many other parts of the body. You can think of connective tissue as the body's scaffolding. One of its key building blocks is collagen.
In people with hEDS, that scaffolding is more elastic and less supportive than it should be. The result is that joints often move further than intended and require much more muscular effort to keep them stable. It is important to remember that this isn't something you have caused. You didn't become hypermobile because you exercised too much, stretched too often or did something wrong. It is simply the way your body has been built.
"But I've always been flexible..."
Many people with hEDS were described as "double-jointed" as children.
Perhaps you could:
Put your feet behind your head.
Bend your thumb back to your forearm.
Impress your friends with party tricks.
At the time, it may even have seemed like an advantage. As we get older, however, that extra movement can become harder for the body to control.
Imagine a tent. A normal tent has tight ropes holding everything firmly in place. Now imagine those ropes are slightly stretchy. The tent still stands, but every gust of wind causes it to wobble.
That's similar to what happens around hypermobile joints.
Why does it hurt?
This is probably the biggest question people ask. The answer is usually not because the joints are constantly being damaged. Instead, pain develops from several different factors working together.
Your muscles are working overtime
Normally, ligaments help stabilise our joints. In hEDS they are often more elastic, so the muscles have to do much more of the stabilising. Imagine holding a shopping bag all day. Eventually your arm aches. Now imagine every muscle in your body doing something similar every day. That is one reason why people with hEDS often describe feeling physically drained.
Small amounts of extra movement matter
Many joints don't fully dislocate. Instead they move slightly more than ideal. These tiny movements can irritate surrounding tissues, making muscles tighten in an attempt to protect the joint. This can lead to aching, stiffness and fatigue.
The nervous system becomes more protective
When pain has been present for months or years, the nervous system can become more sensitive.
Think of a smoke alarm. Normally it goes off when there's a fire. Over time it becomes so sensitive that it starts reacting to burnt toast. Your nervous system isn't imagining the pain. It is simply trying very hard to protect you.
The good news is that nervous systems can become less sensitive again with the right approach.
Why am I so tired?
Fatigue is often one of the hardest symptoms to explain to other people. This isn't simply "being tired." Many people describe feeling completely drained after relatively small tasks.
There are several reasons:
Your muscles are working harder than most people's.
Living with pain is exhausting.
Poor sleep is common.
Your body often has to work harder to maintain posture.
Fear of pain may lead to reduced activity and loss of fitness.
Some people also experience problems with their autonomic nervous system, such as dizziness or a racing heart when standing.
None of this means you are lazy. Your body is simply working much harder than it appears.
The battery analogy
One analogy I often use is to imagine everyone starts the day with a battery. Perhaps somebody without hEDS wakes up with a battery at 100%. Getting dressed uses 2%. Driving to work uses another 5%. Walking the dog uses 8%. They still have plenty left by lunchtime.
For someone living with hEDS, that battery may start at only 60–70%. Getting dressed requires more muscular effort. Standing to prepare breakfast takes more energy. Simply maintaining good posture while sitting at work is more demanding. By lunchtime, the battery may already be nearly empty. That doesn't mean you've failed. It simply means your body is using energy differently. The goal of rehabilitation isn't just to help you do more. It's to increase the size of your battery over time.
The boom-and-bust cycle
Many people with hEDS recognise this pattern immediately. You wake up feeling a little better. You catch up on the housework. Do some gardening. Go shopping. Meet a friend. By the evening you're exhausted. The following day you can barely move. You spend two or three days recovering. Then the cycle starts again. This is known as the boom-and-bust cycle. The problem isn't that you were active. The problem is that your body couldn't yet cope with that amount of activity. Breaking this cycle is often one of the biggest steps towards feeling more consistent.
Pacing: one of the most important skills you'll learn
Pacing doesn't mean doing less forever. It means doing the right amount today so your body can do a little more next month.
A useful question to ask yourself is:
"Could I comfortably do another two or three repetitions?"
If the answer is no, you've probably done enough.
Finish while you're still feeling reasonably comfortable rather than waiting until you're exhausted. Recovery should be part of your plan, not something that only happens after you've overdone it.
Exercise is medicine—but the dose matters
People often ask me: "Should I exercise if everything hurts?"
The answer is usually yes, but the dose matters enormously. Think about medication.
Too little often doesn't work. Too much causes side effects. Exercise is no different. Finding your starting point is far more important than finding the perfect exercise.
What sort of exercise helps?
Most rehabilitation programmes include four main ingredients.
1. Aerobic exercise
This helps improve stamina, cardiovascular health and, surprisingly, often reduces fatigue over time.
Walking is excellent. Cycling is excellent. Swimming or exercising in water can be particularly comfortable. The important thing is to start where you are. Five minutes is infinitely better than zero.
2. Strength training
Strong muscles help support joints. This doesn't mean lifting heavy weights. It usually means slow, controlled movements performed consistently.
Examples include:
Sit-to-stands from a chair
Bridges
Heel raises
Mini squats
Step-ups
Resistance band exercises
Gentle core exercises
Quality matters far more than quantity.
3. Balance and body awareness
Many people with hEDS have reduced joint position sense (proprioception). Your brain doesn't always receive the clearest information about where your joints are. This can affect coordination and stability. Simple balance exercises can help retrain this system.
Initially, these should always be performed somewhere safe, perhaps standing beside a kitchen worktop. The aim isn't to balance for as long as possible. The aim is controlled, confident movement.
4. Flexibility
This often surprises people. "But I'm already flexible!" Yes—but muscles can still become tight. The important difference is this: Don't stretch into your extreme range simply because you can. Instead, focus on gentle movement and relieving muscular stiffness.
A useful phrase to remember is:
Just because your joint can go there doesn't mean it should.
What should I avoid?
Everyone is different, but common mistakes include:
Exercising until completely exhausted.
Locking knees or elbows into hyperextension.
Stretching aggressively into already flexible joints.
Constantly comparing yourself with other people.
Stopping all activity after a flare-up.
Increasing exercise too quickly because you're having a "good day."
Flare-ups happen
Even with good management, flare-ups will happen. That doesn't mean you've gone backwards. Recovery is rarely a straight line.
When symptoms increase:
Reduce activity slightly rather than stopping altogether.
Continue gentle movement if possible.
Prioritise sleep.
Stay hydrated.
Return gradually to your previous level.
Think of it as turning the volume down rather than switching everything off.
What about work?
Many people spend hours sitting at a desk, driving or, like some of my patients, working as a seamstress, artist or musician. Static positions can often be just as tiring as physical work. Try to change position regularly. Stand up every 20–30 minutes if you can. Walk around. Roll your shoulders. Stretch your legs. Take a few slow breaths. Small changes performed consistently often make a much bigger difference than one long stretching session at the end of the day.
Sleep matters
Pain and poor sleep often feed each other. Better sleep doesn't cure hEDS, but it can significantly improve your ability to cope.
Simple habits can help:
Keep similar bedtimes.
Reduce screen time before bed.
Keep your bedroom cool and dark.
Avoid doing too much on your "good" days.
Looking after your mental wellbeing
Living with a long-term condition is difficult. Many people grieve the life they expected to have.
Feeling frustrated, worried or overwhelmed doesn't mean you're weak. Pain affects every part of life. Talking to family, friends or healthcare professionals can be just as important as any exercise programme.
Progress isn't always measured by pain
Many people judge success entirely by asking:
"Does it still hurt?"
Sometimes a better question is:
"What can I do now that I couldn't do three months ago?"
Perhaps you're:
Walking further.
Needing fewer rest days.
Sleeping better.
Returning to hobbies.
Feeling more confident.
Recovering more quickly after activity.
Those are real signs of progress.
Small improvements become big changes
Most people don't improve because of one miracle exercise. They improve because of hundreds of small decisions. A short walk. One extra repetition. Taking a movement break. Stopping before exhaustion. Being consistent. Those small choices gradually build a stronger, more resilient body.
My advice if you're living with hEDS
If there's one message I'd like you to take away from this article, it's this:
Your body isn't broken.
It simply works differently.
The aim isn't to become somebody else. The aim is to understand your body well enough that you can work with it rather than constantly fighting against it.
With the right education, appropriate exercise, sensible pacing and a gradual approach, many people with hEDS become stronger, more confident and able to enjoy activities they had previously given up. Progress may be slower than you'd like. There will be setbacks. But there is every reason to be hopeful. Every small improvement matters. If you're unsure where to begin, or would like an individual assessment and exercise programme tailored specifically to you, I'd be delighted to help. You don't need to do this on your own.
Further Reading and Useful Resources
If you've recently been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), or you suspect you may have hypermobility spectrum disorder (HSD), it can feel overwhelming. There is a huge amount of information online, but unfortunately not all of it is accurate or evidence-based.
The following resources are ones I regularly recommend to patients. They provide reliable information, practical advice and support to help you better understand your condition.
The Ehlers-Danlos Society
Website: https://www.ehlers-danlos.com
Probably the best place to start. The Ehlers-Danlos Society is an international charity dedicated to improving the lives of people with EDS and hypermobility spectrum disorders. Their website contains excellent information on:
Understanding hEDS and HSD
Symptoms and diagnosis
Pain management
Fatigue
Exercise and physiotherapy
Research updates
Webinars
Healthcare professional resources
If you're newly diagnosed, I would strongly recommend spending some time exploring their website. It is written for both patients and healthcare professionals and is an excellent source of reliable information.
The Ehlers-Danlos Support UK
Website: https://www.ehlers-danlos.org
This UK charity offers practical advice specifically for people living with EDS in the UK.
Their website includes information on:
Exercise and movement
Daily living
Fatigue management
Pain
Employment
Benefits and education
Patient support groups
They also host online events, educational webinars and support networks.
One particularly useful article is:
Exercise and movement for adults with hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders, written by specialist physiotherapist Jason Parry.
Hypermobility Syndromes Association (HMSA)
Website: https://www.hypermobility.org
Another excellent UK charity supporting people living with hypermobility.
Exercise
Fatigue
Pain management
Daily living
Pacing
Community support
They also provide educational talks and online resources.
NHS Hypermobility Exercise Programme
Download:
This is an excellent beginner's guide developed by NHS Fife.
It contains:
Simple strengthening exercises
Progressions
Advice about pacing
Practical home exercises
If you're unsure where to start, this is a sensible place to begin.
The Muldowney Protocol
Download:
Kevin Muldowney is a physiotherapist who has spent many years treating people with EDS.
His rehabilitation approach focuses on:
Joint protection
Progressive strengthening
Improving stability
Reducing flare-ups
Gradually increasing function
It is aimed primarily at physiotherapists, but motivated patients may also find it interesting.
Remember, however, that not every exercise will be appropriate for every individual, so it should be used alongside advice from your own physiotherapist rather than as a stand-alone programme.
The GoodHope Exercise and Rehabilitation (GEAR) Programme
For those interested in the research behind rehabilitation, this open-access paper describes one of the world's leading multidisciplinary exercise programmes for people with EDS and hypermobility spectrum disorders.
Although written for healthcare professionals, it clearly explains many of the principles behind successful rehabilitation, including education, self-management and progressive exercise.
Remember…
The internet can be both helpful and frightening. People understandably tend to post when they are struggling rather than when they are quietly getting on with life. If you spend too much time reading worst-case stories online, it can leave you feeling hopeless. In reality, many people with hEDS improve significantly with the right combination of education, appropriate exercise, pacing, good sleep habits and gradual increases in activity.
Your journey won't look exactly like anybody else's.
Try not to compare yourself with people on social media.
Instead, compare yourself with where you were six months ago.
Even small improvements matter.
A final thought
One of the biggest changes I see in clinic isn't simply people becoming stronger. It's people becoming more confident. They begin to trust their body again. They understand why symptoms fluctuate. They stop chasing the "perfect" day and instead build consistency. That confidence often becomes the foundation for everything else.
If you've recently been diagnosed with hEDS, remember this:
You are not broken. Your body simply works differently.
Understanding that difference is the first step towards managing it well.
Physio At Home
Physio at Home is a mobile physiotherapy service providing assessment and rehabilitation in the comfort of your own home across Mid Cornwall. We support people living with a wide range of musculoskeletal, neurological and long-term conditions, tailoring treatment to your individual needs and goals. If you're living with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD), we can assess how the condition is affecting your everyday life, provide practical advice and education, and develop a personalised exercise programme to help you move with greater confidence and improve your function.
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