Like a High-Stakes Jenga Game: Pacing Is Harder (and More Important) Than It Looks

Living with dysautonomia can feel like a high-stakes game of Jenga. Every task— a shower, a difficult email, a loud room—pulls another block from your foundation. Without careful, intentional pacing, the tower collapses.

What exactly is pacing? And how do I make it work for me?

You have chronic pain, and possibly fatigue, and your doctor has recommended pacing. We all have heard of pacing, and it sounds like something we should know how to do… but the reality is a lot more complicated, because our lives are complicated.

I developed Complex Regional Pain Syndrome in 2015, and within a year I began noticing symptoms of Dysautonomia, including fatigue, sweating after the slightest exertion and even dizziness and nausea that accompanied horrible migraines. Long COVID acted like gasoline on a grass fire with these symptoms. Pain Reprocessing has helped reduce my pain levels, but I still struggle with moderate to severe Dysautonomia with Post-exertion malaise (PEM). Post-exertional malaise (PEM) is a severe, delayed worsening of symptoms—such as extreme fatigue, cognitive dysfunction, and flu-like aches—that occurs after minimal physical, mental, or emotional exertion. I had my first PEM flare after a workout with my physical therapist. I was feeling strong and decided to increase the number of reps and the intensity of my workout. I left the gym feeling proud of myself for the best workout I’d had in years. Unfortunately, I had no idea I had created a ticking time bomb. On my way home, I blacked out for a few seconds and found my car had drifted off to the side of the road. Fortunately, I live in a small university town that is very quiet when classes are not in session, so there was no traffic and I didn’t hit anything. The next day I felt an intense wave of nausea and dizziness. I got in to see my doctor, and she explained how a PEM flare is triggered and managed. It took about three days for me to recover from the body aches and flu-like symptoms. Her recommendation was rest, continued electrolytes, and pacing to avoid it happening again.

What is PEM and why does it happen?

Key Features of PEM

* Delayed Onset: Symptoms typically appear 12 to 48 hours after the triggering activity, though onset can range from immediate to several days later. 

* Disproportionate Impact: The resulting exhaustion and relapse are vastly out of proportion to the amount of energy spent. 

* Long Duration: Flare-ups can persist for days, weeks, or even longer. 

Common Triggers

* Physical Exertion: Basic daily tasks like showering, cooking, standing, or walking. 

* Mental/Cognitive Effort: Reading, conversing, using a computer, or multitasking. 

* Sensory or Emotional Stress: Bright lights, loud sounds, or emotional reactions like excitement or distress

 Managing Your Energy Reserves

The strategy generally recommended to avoid PEM is pacing. Pacing is a way of balancing activity and rest to help reduce the risk of symptom flare-ups. It sounds so simple, but it takes thought and commitment to pace everything. It is easy to forget that stressors like loud noises and time on your computer need to be counted. They call it “staying within your energy envelope”. Some use ‘Spoon theory’ and count how many spoons they are using for each task or stressor. However you manage it, pacing involves finding a manageable level of activity that you can maintain over time.

Using wearable technology

A wearable technology like Fitbit or Visible can help measure exertion and rest by using heart rate and movement data. Capturing and analyzing this data in real-time may help you to find, and stay, within your energy envelope. I find using AI to track my symptoms and activities very helpful. I have programmed the Apple Health app to check in with me with reminders to track activity, balance activity levels, and take my electrolytes.

For some people, pacing is not possible due to the severity of their symptoms. You need to check with your doctor and have a frank conversation about any changes in your activity levels, and any changes in your symptoms. 

With Long Covid, ME/CFS, fibromyalgia, CRPS and other pain conditions, available energy can be impacted by the weather, hormone changes, or other illnesses. You know your own body and your sensitivities. You alone can decide what impacts your energy levels. But remember, pacing is not about avoiding all activity or any specific activity all the time. For most people living with chronic illness, some activity and movement is helpful as long as you balance that activity with rest. By monitoring intensity and length of time on a task, you will be able to carefully incorporate exercise, work, and social activities. 

Practical strategies for pacing :

- Listen to your body

- Prioritize your tasks/activities 

- Accept that rest is essential 

- Use tools to better manage your energy (I.e., mobility aids, sitting while showering or in the kitchen,  cleaning just one area of a room at a time)

- Cognitive activities can be harder to monitor. Support cognitive energy by single-tasking instead of multitasking, reducing background sensory noise, and taking pure sensory breaks (eyes closed, no audio). Turning off video to just use audio during meetings and changing the brightness or color of screen backgrounds can also help.

- Keep a diary to track how you feel after activities. 

- Wear a tracker, like Fitbit or Visible - these can help monitor HRV, predict crashes, help with pacing, and provide validation and a sense of more control.

- Do things that make you happy… Joy can be a stress reducer.

Redefining Radical Rest

Shifting your attitude about Radical Rest is essential. Resting after or to avoid PEM means complete quiet without engaging with screens. Phone, computer and TV screens take up a lot more cognitive energy than you might realize. Remember that rest is a therapeutic and meaningful activity, even if the world doesn’t think it is. Resting can include naps, quality sleep, breaks or simply finding a quiet space. Use variety in how you choose to rest as things that were once restful can become tedious or exerting. Breathwork and Mindfulness can improve tolerance and the quality of your rest.

Your expectations of being hard-working and productive need to be adjusted. Societal, cultural, legal, and political barriers exist. It is challenging for families and employers to understand your needs. Set well-considered boundaries, and adjust them when necessary.

Individual needs for pacing are unique, and can vary from day to day. Perfect pacing is an impossibility, and it improves with experimenting. You will experience setbacks and miscalculations from time to time—not because you failed, but because baselines naturally shift. You can learn from setbacks and adapt and discover how to navigate all the things you want and need to do.

Self compassion is key. Looking at pacing as a journey rather than another task will help. Be cautious about the advice you receive about pacing, and listen to your own body for what it needs. No one else can tell you what is working for you. 

References

Appelman, B., Charlton, B. T., Goulding, R. P., Kerkhoff, T. J., Breedveld, E. A., Noort, W., Offringa, C., Bloemers, F. W., van Weeghel, M., Schomakers, B. V., Coelho, P., Posthuma, J. J., Aronica, E., Joost Wiersinga, W., van Vugt, M., & Wüst, R. C. I. (2024). Muscle abnormalities worsen after post-exertional malaise in long COVID. Nature Communications, 15, Article 17. https://doi.org/10.1038/s41467-023-44432-3

O’connor, K., Sunnquist, M., Nicholson, L., Jason, L. A., Newton, J. L., & Strand, E. B. (2017). Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves. Chronic Illness, 15(1), 51–60. https://doi.org/10.1177/1742395317746470

Stussman, B., Williams, A., Snow, J., Gavin, A., Scott, R., Nath, A., & Walitt, B. (2020). Characterization of post–exertional malaise in patients with myalgic encephalomyelitis/chronic fatigue syndrome. Frontiers in Neurology, 11, Article 1025. https://doi.org/10.3389/fneur.2020.01025

Vøllestad, N. K., & Mengshoel, A. M. (2023). Post-exertional malaise in daily life and experimental exercise models in patients with myalgic encephalomyelitis/chronic fatigue syndrome. Frontiers in Physiology, 14, Article 1257557. https://doi.org/10.3389/fphys.2023.1257557