How to Pace with EDS and Hypermobility: A Gentle Guide from the Community

Estimated reading time: 10 minutesI wish I had learnt about pacing earlier in my health journey. 

Like many of us with Ehlers-Danlos syndrome and symptomatic hypermobility, 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.

But now I really understand what pacing with EDS is and what it is not. I was able to implement strategies that I needed to find a sustainable rhythm to manage energy and avoid the boom and bust I used to experience regularly.

In this blog, I am sharing pacing ideas and suggestions from our amazing The Zebra Club community and my own strategies for effective pacing and energy conservation.

What Does Pacing Actually Mean? Community Definitions

When it comes down to it, pacing involves learning to listen to what your body needs.

Pacing can look and mean different things for everyone, so we asked some experts, The Zebra Club Community, to define pacing. Here is what they said:

• “Pacing for me is a constant balance of activity and rest.” – Caroline
• “Pacing for me means trying to learn my physical and mental or emotional limits, which change daily.” – Meg
• “Pacing for me is being in tune with my body and choosing/adapting each activity so that it stays within my energy threshold and will not trigger Post Exertional Malaise (PEM) later.” – Jo
• “In terms of what it means to me, it’s an ever developing (and ever changing) self-awareness of what I can cope with, definitely work in progress.” – Rachael
• “Pacing to me, means I’ve been able to gauge my energy level for the day, adapt and hopefully have managed to choose to do a few tasks that don’t completely drain my battery and cause me to suddenly, ‘hit the wall’ with fatigue/pain.” – Allison

Why Pacing Helps with EDS and Hypermobility

Pacing can help with many of the challenges we face with EDS/HSD. From reducing flare-ups that come as a result of the boom and bust cycle to reducing pain and fatigue.

I’ve found pacing to be invaluable for my health and management of my conditions. I have hEDS, MCAS, POTs, and CFS. It’s not something I can push through.

Here’s what I learnt on my own journey:

• It helped reduce the number of boom-and-bust cycles I was having. This cycle means we tend to do too much on a ‘good’ day, only to crash out afterwards. For me, a crash includes pain, brain fog, fatigue, and POTs symptoms that can last a few days. With pacing, I was able to spread my energy more evenly, which helped prevent these extreme highs and lows.
• It helped reduce my tissue inflammation and reactions. When I was pushing through physical activity, it was putting extra strain on my soft tissues. I started slowing down, listening to my body, and this seemed to prevent injury and flare-ups.
• I really needed help with nervous system regulation. Many of us live in a fight-or-flight state due to our chronic illness and pain. Gentle pacing reduces sensory and physical overload, which can support better autonomic balance. This is why my Integral Movement Method (IMM) is so focused on restoring nervous system regulation.
• I also have ME/CFS, which can overlap with people with EDS. Many people have ME/CFS or Long-COVID.  With these conditions, physical or cognitive exertion can trigger Post Exertional Malaise (PEM). This isn’t just feeling tired and sleeping it off.  This is a disproportionate worsening of symptoms like fatigue, pain, dizziness, brain fog, and sleep disruption even after a minor exertion. Pacing can help avoid PEM post activity crashes.

The spoon theory for energy management

Have you heard the term “spoonie” or “spoons” thrown around when discussing energy management?

The Spoon Theory is a simple way to help with pacing by imagining that each day you have a set number of spoons. Each spoon represents a unit of energy. Each activity you do uses up a spoon, with higher energy activities using more than one spoon.

I’d like to add that spoons will come in different sizes, as we all have different capacities. Some of us are on teaspoons, some tablespoons. Some may have a mixture throughout any given week.

A battery needing to be charged after various activities of daily living or exertion, or a gas tank running out, may be a better analogy for you. These help us visualize and even talk about our energy limitations with others.

How to Find Your Baseline: Step One of Pacing

To figure out how to start pacing, we have to first find our baseline. I always talk to my movement therapy clients about finding this baseline.

I define the baseline as how much activity you can do without worsening your symptoms.

Everyone will have a different baseline to start with. That’s why it is super important we start low and go slow. That way, we can establish a safe baseline that we can build up from.

It might be adding one minute of an activity, and that’s OK. There is always somewhere to start.  This must be established first to ensure sustainable progress.

When I was starting my movement journey, I found making a note of how I felt and what reactions I had to the activity really helpful.

I now have an Apple Watch that tracks my heart rate and exertion, so I know how I am responding. Members of The Zebra Club have mentioned the Visible app (I have not used it myself).

If you find tracking increases anxiety, you could just keep track of activities you do and how you respond, so next time you can increase or decrease time, repetitions, or load.

Here are some other ideas for pacing tools and practices:

• Keep a symptom diary and track how you feel each day, but only if that is not triggering for you.
• Notice your own tendency to want to do more on good days. This is tough as we often want to get as much done as possible when we feel well. It’s ok to rest when you are feeling well, too!
• Pick one activity like cooking, showering, and do the same amount every day for a week, and see how your tolerance for that is before increasing your activity
• Start small – always. I will never stop saying “Start low, Go slow.”
• Build rest into your days – this has been invaluable for me. Even on days when I’m feeling well, I will take a little rest or meditate.
• Self-compassion – be gentle with yourself. We won’t always get pacing right when it comes to conditions that are variable like these. We can learn from that!
• Record any post-exertional symptoms – these are clues to your limit.

Daily Pacing Practices from the Zebra Club Community

We asked The Zebra Club community for examples of how they implement pacing into their days. They had some great tips for pacing:

1. Build in Scheduled Rest Periods

   • Christytransformed her approach to rest: “After my diagnosis, I added ‘Prescribed Rest’ to my calendar. . .This means I’m horizontal, in bed, napping, or otherwise turning off my brain and body with TV or reading. I used to call it ‘Nap Time’ but calling it ‘Prescribed Rest’ makes me take it more seriously.”
   • Daankeeps it simple: “Power Nap each day right after having lunch helps me get through the rest of the day.”

2. Spread Out Your Daily Tasks

   • Meghas mastered the art of spacing: “On a typical day, I spread out my exercises/movements as well as any chores & tasks and take plenty of breaks in between each.”
   • Caroline applies this to work: “If I have a lot of work to get done I will break the work up in a way that allows me to move around my office.”

3. Plan Ahead to Conserve Energy

   • Meg shares a game-changing tip: “If I know I have an appointment or social activity, I always try to get showered the day prior so I don’t have to use up that energy (dry shampoo is my friend 😂).
   • Daan emphasizes preparation: “Rest before and after everything I do. And plan everything well. Just one bigger task each day and rest days.”

4. Use the One-Day-On, One-Day-Off Method

   • Caroline has perfected the alternating approach: “If I am going swimming one day, I will rest the next day and do a gentle Zebra Club class. If I do a social outing one day, I will stay home the next.”

5. Adapt Your Physical Position Throughout the Day

   • Kristen takes micro breaks “For me it means sitting or laying down for a few minutes throughout the day instead of buzzing around till my pain flares. It’s about being proactive and not reactive.”

6. Modify Exercise and Movement

   • Emily honors her limits: “If I attend a Pilates class at the local health club I do modify something to what I’ve learned thru IMM & TZC. I most often do about a 1/4 of the instructed repetitions.”
   • Anonymous adapts her movement practice to her daily capacity: “I might be only able to do some lying down movements or just breathing some days, and it still

7. Limit Social and Cognitive Demands

   • Rachael sets clear boundaries: “General rules I try to stick to are 1. to only book one appointment/ meeting with other people involved per day – this means I often wait much longer for things to happen as there just are not enough days, patience is a virtue lol.” She also plans recovery time: “if it a really important meeting of any type, I try to schedule a rest day afterwards.

8. Avoid Medical Appointment Overload

   • Caroline protects her energy around healthcare: “If I have a maintenance doctor appointment (like a dental cleaning or annual shots) I will not schedule any additional doctor appointments that week.”

9. Check In With Your Body Regularly

   • Allison emphasizes ongoing awareness: “Implementing this means I’m listening to my body, adapting every task and calibrating how much more I can do without crashing.”
   • Kelley explained that this is an ongoing process: “Continuously evaluating and reevaluating. It’s hard at first but when you get really in touch with your body, it lets you know when it’s too much. Hardest part is finding and listening to that voice!”

Pacing and Movement: Staying Active Without Overdoing It

We know movement and exercise is essential for a condition like EDS or HSD. But it’s also challenging when you are living with other conditions, too.

Here are some suggestions to keep moving without the boom and bust.

• This is where the baseline is really key. If we don’t know your baseline of exercise that you can do without a flare, we could keep causing the boom and bust.
• You may find time is a better tracker than the number of reps. Start with one minute of movement if you need to.
• Watch for delayed symptoms. Sometimes we may not know if we are overdoing it at the time, but wake up the next day feeling off. If pain and fatigue increase, you know you did too much. This is great information, and you can adjust accordingly. And try not to have any guilt about needing to start even lower.
• Build in rest – gentle mindful movement is so helpful. It’s great to spend time on breathing or relaxation practices.
• Nervous system regulation first. We start with what the IMM calls Unwind. This involves learning to release tension, regulate the breath, and prepare to move.
• Consistency is far better than intensity. Doing 5 minutes a day is better than an hour followed by a 5-day crash. You can eventually build up as you keep going.
• Listen to your body. Learn when it is happy to move or when it needs rest.

“On a typical day, I spread out my exercises/movements as well as any chores & tasks and take plenty of breaks in between each.” -Meg

“Pacing for me is one of the hardest parts of getting better at taking care of myself and do regular movement; because I have been told since childhood “no pain no gain”.” – Alise

When Pacing Is Hard: The Emotional Side of Slowing Down

The emotional impact of having to slow down was probably the hardest part for me.

When I got my CFS diagnosis, I had no idea that mental exertion could cause a flare. I was always pushing through my computer work, doing just one more email, writing another article, or having one more meeting.

Slowing down felt like I wasn’t working hard enough, or that I was giving in.

I think it’s normal for us to experience guilt, frustration, and grief living with these chronic illnesses.

Here’s some of what I have had to learn to let go of:

• Stop feeling guilty about saying NO
• Stop worrying about judgment from others
• Frustration with myself about my limitations
• Grief over what I thought I should be able to do
• Comparing myself to others

By learning to let go. I actually became stronger because, by avoiding the flares and the boom and busts, I built resilience.

So letting go, although scary and feeling like you are losing a part of yourself, is actually the way forward.

Practicing Self-Compassion While You Learn

For all the perfectionists and overachievers reading this, may I recommend the practice of self-compassion (I wrote a whole blog on this alone!). It can be really hard to learn.  However, I think it is another vital tool for pacing.

• It helped me be gentle with myself by changing how I talk to myself.
• I reframed pacing as an act of self-love and self-respect.
• I built in constructive rest to give my body and mind the space they needed
• A part of self-compassion is shared humanity. For me, connecting with others who understand was invaluable. The Zebra Club community offers this in such a unique and supportive way.

Self-compassion is treating yourself with kindness and gentleness, even in moments of struggle.   In times of struggle, we can often be the first ones to beat ourselves up.   But practicing self-compassion can help soften the inner critic who says, ‘you haven’t done enough today’.

“I’ve been using this mantra “I’m honoring my pace.” It calms me when I’m feeling pressure from external factors. I remind myself I’m honoring my pace.” – Emily

Sometimes life happens

Not only is learning to manage energy a work in progress, but it’s also important to mention that sometimes we can do all “the right things” and flares will still happen.

Life happens, outside stresses we can’t control happen, we can’t always pace as much as we need to, and these factors contribute to flare-ups.

This is the time to be even more gentle on yourself. It doesn’t mean your pacing strategy isn’t working; it just means you’re going through a challenging moment. But this, too, shall pass.

The Zebra Club has built a number of resources and expert guidance over the years on how to pace effectively. Members can find Pacing presentations by Jo Southall, OT, and Emily Cochrane, Exercise Physiologist. We also have a wide range of videos and audio meditations to support different movement needs.

Video: Diaphragmatic Breathing

As I mentioned, sometimes rest can involve breathing. In this video, I discuss why some of us may struggle with breathwork and then lead you through a breathing practice.

FAQ

Is pacing really just doing less?

Pacing is not just doing less, it’s about finding the right amount of activity for you so that you can do things more consistently and without flare-ups

Can pacing prevent flare‑ups?

Yes, pacing can prevent flare-ups. Whilst we can’t guarantee to prevent every flare, pacing can help reduce the frequency or intensity of crashes. I see this all the time with my clients.

What does pacing look like in real life

Pacing is going to look different for each of us. It may be taking regular work breaks or scheduling rest time into your day. It may mean scheduling rest days after busy days, or only going to one appointment a day or a week. You can find what works for you.

How do I know if my pacing is working

If pacing is working, you should start to notice few post-exertional crashes, less pain or fatigue after activity. It does take time because we are also working with nervous system regulation.

How is pacing different from resting?

Resting would be a part of pacing for many people. Pacing is the strategy of planning activity and rest. Resting is often a vital part of that strategy.

Does pacing mean I can’t exercise?

Not at all – pacing would include exercise that is right for you. The right kind, the right dose, and the right time. In The Zebra Club, we have a wide variety of gentle, mindful classes that allow you to exercise without flaring symptoms.

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.