Scared to Exercise with EDS or hypermobility? You’re Not Alone. Here’s a Safer Way to Start

Estimated reading time: 5 minutesBeing scared to exercise is something I commonly hear about. It makes sense if you have experienced pain or injury in the past.

Sometimes it can be pain-related fear or fear of movement. At its extreme, it can develop into kinesiophobia, or a debilitating fear of movement, that comes from feeling vulnerable to injury or reinjury (1).

If you are anywhere along this spectrum and are afraid that movement might cause pain, worsening pain, subluxation, or injury, know that you are not alone. It is incredibly common for people living with chronic pain and hypermobility or Ehlers-Danlos syndrome (2), or those who may have had an injury or trauma at some point.

It is a real protective response from the nervous system based on your past lived experiences.

If a certain movement often causes shoulder pain or subluxation, your brain can find adaptive ways to avoid doing that particular movement, which it believes is harmful to you. Over time, your brain may start to link movement with danger.

So, is this something we can reverse? Yes! Absolutely, with the right approach.

Gentle, mindful movements that help you feel safe in your body can start this journey back to movement.

That’s the foundation of my work and The Zebra Club, offering movement therapy that understands some of us have this fear, and working with you, not forcing you to do movement and exercise you don’t feel ready for.

Let’s explore this concept further in the blog.

Why Exercise Feels So Risky When You Have EDS or HSD

I think one of the main reasons exercise feels risky is that we often haven’t been given the right type of approach to movement. This may have led to injury or pain.

First of all, you are not alone if you are experiencing this. In my 17 years, I’ve worked with thousands of people living with EDS and HSD, and this fear is something I see and hear all the time.

We may have been told to move more or push harder, and do more reps.

Or we may have been told not to move at all and to avoid exercise. I’ve heard that story too!

We may have tried to exercise, but found it leads to flares and injuries. Understandably, we may start to feel nervous about it.

Feeling nervous about movement and exercise can lead us to avoid it altogether. This is a valid response when we have a fear of pain, but if we completely stop moving, it can come with consequences:

• It can lead to deconditioning 
• It could lead to increased pain sensitivity
• Greater fatigue as we become less active
• Loss of confidence in our own body
• Smaller worlds as we go out less, we do less, and so on

Sadly, it is a cycle that feeds itself. You avoid movement → your body becomes less resilient → movement feels harder → fear grows → fatigue increases.

I firmly believe there is a way around this, and at the heart of it is movement. 

In our recent research study, “A qualitative study exploring participants’ feelings about an online pilates program designed for people with hypermobility disorders”, we found that when the approach to movement takes into account the unique needs of hypermobility and accessibility, people begin to feel safe with movement again (3).

One participant said, “‘It has made consistent movement more feasible for me, which is nice considering how much I miss regular strength training (3).”

How Do I Know if Movement Is Helping or Hurting?

Knowing if movement is helping or hurting is a big concern for people with EDS and HSD. The answer lies in listening to your body and not pushing through pain.

I recently talked about this in my newsletter – the key signs you may be overtraining with EDS. I discussed how it seems a common experience to push through pain or go beyond our limits, maybe without realising it at the time, only to find we pay the price a couple of days later.

I’m a proponent of a “No Pain, No Strain” approach to movement. Pushing through pain never helped me, and I’ve learnt to slow it down and really listen.

Movement should make us feel better. It’s OK to feel muscles working when you exercise. It is OK to feel muscular soreness when working out – that is normal. And you may feel tired afterwards, but we shouldn’t feel completely wiped out. That is a sign we’ve done too much.

I have found with my clients and members of The Zebra Club that little and often is much better than pushing through. Pushing through and ignoring our signs could lead to flares and injuries.

Where Do I Start with Exercise If I’m Scared to Even Try?

I always say, “It doesn’t matter where you are today, there is always something we can start doing.” We start where you are today – even if that means lying down and breathing. This counts as movement, too, and it is particularly helpful for people who are scared of movement.

Breathwork can help calm the nervous system and turn down the pain dial. This is why the Integral Movement Method starts with breath and relaxation.

Being someone with hEDS, POTS, ME/CFS, and MCAS, I know personally how scary movement can be. What worked was slowing down and calming my system with breath.

Then, small, low-impact movements that build on proprioception and awareness. Gentle, slow, and considered moves where the nervous system does not feel under threat.

Safety is super key when dealing with fear of exercise or kinesiophobia.

I like to call it exploring movement – we explore without fear or pressure. Just at a pace that works for you.

Tips for Rebuilding Confidence in Your Body

There are things we can do to start finding safety and confidence in our bodies again. Here are my top tips for confidence-building:

• Go slow – let the nervous system know it is safe. Pushing and rushing could create fear. We want to move away from fear-based movement.
• Controlled movement is key – I’ve always said it’s not about the range, it’s about the control. If I’m not aware or in control of my movements, that could be scary and potentially cause injury.
• Use props and support – try chair classes, use pillows, blocks – these can be essential tools for feedback
• Track how you feel – many of our Zebra Club members keep a journal. They make a note of how each class made them feel and any modifications they made. It can help you notice patterns and what movements in particular cause you to feel fearful.
• Celebrate the small wins – Every movement counts, every breath counts, every heel raise or wrist circle count. It doesn’t need to be big to count.
• Enjoy it – my ultimate goal is to help people enjoy movement, rather than see it as a chore that we must do because someone told us to. We want to do things our nervous system loves.

What Kind of Movement Is Best for People with EDS or HSD?

Personally, I think the best exercise or movement for people with EDS/HSD is the one that meets you where you are.

There is no one-size-fits-all plan. That’s why The Zebra Club is so successful – it understands this and offers different levels and categories of movement.

For me, the answer was in integrated movement – hence the IMM. A practice that combines breath, relaxation, alignment, nervous system regulation, and strengthening work.

I think what works for each person is BEST.

We’re often told “don’t do” certain things if you have EDS, but most things can be adapted to meet the person. If you love a certain activity, look at ways to adapt and continue.

Have you experienced this? Let me know in the comments.

In this video, I dive into this question: “What if I’m scared to exercise?”

FAQ

Is it safe to exercise with EDS?

Yes, it is safe to exercise with EDS, but we must take the right approach and modify as needed. Always listen to your body and start small.

What is the best exercise for connective tissue disorders?

There is no one best exercise plan or programme. The best exercise is what feels good for your body and ideally one you enjoy.  One that takes into account your connective tissue disorder, too, so that modifications can be made.

Is stretching bad for EDS?

Stretching itself is not “bad”, but it is the approach to stretching that matters. Stiffness is often the body’s way of stabilizing. If we just attack it with stretching and not also stability, it can increase tension and pain. I’m not a fan of static stretching, but dynamic stretching can be very helpful.

Jeannie Di Bon

Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.