Pacing Strategies For MECFS : An Introductory Guide
What Is Pacing?
Pacing is a strategy for activity management used by patients with many diseases who experience chronic fatigue or stress-induced flare ups.
The goal of pacing is to prevent the boom and bust cycle. This is where patients overexert on a good day and then crash and have long periods of inactivity.
Instead of a boom and bust pattern of activity, pacing encourages a manageable and consistent level of activity, listening to your body in order to stop before you crash.
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Pacing Is Different For MECFS
For patients with Myalgic Encephalomyelitis pacing is different because of post-exertional neuroimmune exhaustion PENE is commonly also referred to as post-exertional malaise or PEM.
PENE/PEM causes a myriad of symptoms 23-48 hours after activity including
-sore throat
-swollen lymph nodes
-headache/migraine
-muscle weakness and pain
-cognitive dysfunction
-light and noise sensitivity
-periodic paralysis
-severe fatigue
and much more
Because PENE/PEM peaks 1-2 days after activity it is essential that patients with MECFS do not just listen to their bodies to know when to stop activity, but develop a system of activity monitoring to avoid activities that can be completed without symptoms but will lead to future PENE/PEM.
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Warning Signs & Adrenaline Surges
The most basic rule of pacing is to stop when you feel fatigued this can manifest as
-Muscle soreness or weakness
-Exhaustion or inability to
keep your eyes open
-Migraine or headache
Or if you have these symptoms chronically an increase in them.
Do not push through symptoms. Listen to your body to know when to stop.
For people with ME overexertion can also result in adrenaline surges signs of which are
-Flushing
-Racing heart rate
-Palpitations
-Fast speech
-"Wired but tired" feeling
-Inability to sleep
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The 50% & 80% Rules
The 50% rule is used when patients are completely new to pacing or have just suffered a severe relapse. You start by cutting your activity in half wait for symptoms to stabilize and then can gradually build up your activity until you see an increase in symptoms which signals going over your new baseline.
The 80% rule is used once you have established a baseline. You aim to only do 80% of what you could do on any given day. This gives you a slight buffer for unanticipated stressors.
The percentages used in the 50% and 80% rules can be modified. Those with mild disease may be able to go over these percentages, those with severe disease should adjust downward accordingly.
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Enforced Rest Breaks & The Stoplight System
The stoplight system for pacing consists of labeling each activity you do with a color. Red activities are those that will cause PEM and are unsafe. Yellow activities are those that can be done in limited quantities safely. Green activities are safe restful activities.
By minimizing red activities, enforcing time limits on yellow activities, and putting forced rest breaks for green activities you can monitor your pacing throughout the day. Timers are the primary method of budgeting each color of activity.
Timers can also be used to pace even without a color system to enforce rest breaks and monitor time spent on physically or mentally taxing activities.
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Pacing With Data
Pedometers
For mild-moderate patients who are ambulatory, pacing with a pedometer can be a helpful tool. A max step count can be set based on past experience and you can budget your activity throughout the day accordingly. Pedometers only help with physical pacing, not cognitive pacing or tracking stress.
Heart Rate Pacing
In addition to a pedometer, a heart rate monitor is an extremely useful tool for tracking physical exertion and stress. HR pacing is based on a number called the anaerobic threshold. This number can be tested on a CPET exam or more safely estimated by the formula (220-age)*0.6 (you can multiply by 0.5 for severe patients and 0.7 for mild patients).
Angela Flacks Guide To HR Pacing is an extremely thorough pay as you are able guide to hr pacing.
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Active Rest / Aggressive Rest
Active or aggressive resting refers to the strategy of minimizing activity as much as possible to maximize the body's space to heal. Aggressive rest has not been studied but many long-time community members recommend it when suffering a relapse or at the start of illness to prevent long-term complications. A variation of aggressive rest "convalescence" was once standard practice in cases of severe viral or bacterial infection.
Aggressive rest includes:
-Minimizing light & noise stimuli in the room
-Minimizing cognitive distractions and exertion
-Minimizing physical activity
-Minimizing time upright
-Maximizing meditative and calming practices
Aggressive rest can be very difficult mentally. It is important to balance mental and physical needs. However, it is a powerful tool for avoiding permanent baseline deterioration which often occurs due to insufficient pacing following a crash or relapse.
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Baseline Tracking
Tracking your baseline is essential for effective pacing. When your baseline is improving, it is appropriate to gradually increase activity. When your baseline is declining you will need to implement further activity limitation. Some key data points for monitoring your baseline include:
Morning HR: when you are pacing well your morning hr should stay within a 10-15bpm window. The exact number will depend on your biology and you should wait until your symptoms stabilize to get a baseline.
Heart Rate Variability: Your HRV should also remain relatively stable when you are at baseline. A highly fluctuating HRV can signal going into a crash and your HRV may remain low when you are recovering from a crash.
Sleep & Symptoms: Until you learn what your baseline morning hr and hrv are, you should determine if you are at baseline by your symptoms. After a period of aggressive rest (at least 2 weeks, longer if recovering from a large crash) your symptoms can be read as baseline. Symptoms above this baseline indicate overdoing, stress, or infection.
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Self-Compassion & Rewarding Rest
We live in a society that punishes resting and rewards work.
Pacing is only accessible to people who can rest AND meet their basic needs. Assisting patients in acquiring welfare, mutual aid, and family or community support is an essential part of prescribing pacing.
Severe ME and/or financial & caregiving circumstances may make pacing impossible in some cases. When this is the case stressing about the failure to pace will only worsen the situation.
However, it is essential that we unlearn the idea that resting is bad or lazy.
Reward yourself for resting. Find other disabled friends who will compliment you for taking time off. Remind yourself daily that resting is being responsible and working hard to keep yourself alive.
Good pacing utterly depends on nurturing and creating space for rest.
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Pacing is a broad term for a Chronic Illness management strategy used in many diseases. But pacing for Myalgic Encephalomyelitis ME/CFS or Long Covid is different.
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The presence of Post Exertional Neuroimmune Exhaustion (PENE) aka Post Exertional Malaise (PEM) aka Crashing means that pacing for ME requires avoiding going outside your energy budget even though your body may physically be capable of it.
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Because if you do "everything you can" you will actually be doing too much and trigger severe symptoms and a crash. Repeatedly crashing can lead to permenantly worsened disease.
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This guide provides an overview of some of the best and most popular strategies for Reactive Pacing or pacing in reaction to your bodies needs.
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This is notably different from Prescriptive Pacing present in many excercise and PT programs like Graded Excercise Therapy or GET where you are expected to keep pace with a specific excercise program. Prescriptive pacing is never recommended for ME patients and should be carefully screened for and avoided as it is often innapropriate prescribed.
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The primary strategies used in reactive pacing are:
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☆Being aware of warning signs and knowing when to stop.
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☆The 50% and 80% rule, not using all your energy each day.
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☆Enforced rest breaks and the stoplight system, spacing out and tracking your activities.
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☆Pacing with monitors such as: pedometers or Heart Rate Pacing and tracking Heart Rate Variability (HRV) and resting HR. Utilize Angela Flacks Guide To HR Pacing for the best most detailed guide around.
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☆Agressive resting, focusing on resting as much and often as your can possibly bear.
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Additionally while not strategies many people find the following tips helpful:
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-Use mobility aids!
-Cut back on hygiene activities such as showering that use a lot of energy.
-Do as much as possible in a reclined posture.
-Alternative mentally and physically exertive activities.
-Use blackout masks and noise canceling headphones for full rest
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What strategies do you find most helpful for pacing? Share below!
