Pacing: Setting Boundaries with Fatigue
Cambridge Dictionary defines fatigue as “extreme tiredness.” This definition, however, does not encompass the state experienced by our patients with chronic fatigue such as in illnesses like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID, or Chronic Lyme. In these illnesses, fatigue may be constant and unrelenting or it may come in waves. It is not feeling tired after a long day of work. It is waking up after 12 hours in bed still feeling exhausted with heavy limbs and an inability to perform normal daily tasks such as showering, cooking, cleaning, walking, reading, etc. When a good day comes along and the fatigue lifts, “extreme tiredness” becomes “moderate tiredness.” This is cause for relief and patients often use the extra energy to do the things they could not the day before. Unfortunately, the fatigue then strikes again with Post-Exertional Malaise (PEM). With PEM, symptoms worsen after activity or exertion. This results in a long recovery period and worse fatigue until the cycle starts again. See Post-Exertional Malaise for a better understanding of this symptom.
In these illnesses, it is crucial to understand pacing and how to manage energy to prevent PEM. Once the cyclical pattern is recognized, patients can take control of their energy levels and move towards more consistent energy expenditures to avoid overexertion. Slowly, this can improve quality of life and move towards symptom improvement.
Pacing Strategies
Pacing involves balancing activity and rest to stay within your energy limits. It helps avoid overexertion that leads to PEM.
Activity Journal
Keep a daily activity journal.
Track your activities and how they affect your symptoms.
Note periods of fatigue, PEM, and energy levels.
Using devices to monitor heart rate can be a good way to identify more taxing activities (Visible is continuous heart rate monitor that assigns points to exertion and sets a daily limit over which PEM is more likely).
Assigning “points” to activities and setting a daily point limit can help you determine how much can be done in a day without triggering PEM. Point limits can be moved up or down depending on tolerance and symptoms.
Use your journal to help identify and avoid triggers that result in worsening symptoms.
Energy Envelope
Identify your "energy envelope," the range of activity you can do without triggering PEM.
Staying within this envelope most of the time will prevent overexertion.
Determine what activities (physical or mental) are more taxing and what combination of activities is more likely to “push the energy envelope”.
Once you know the “cost” of different activities, you can make informed decisions about how to spend your energy.
The more you stay in your energy envelope, the less likely a crash and worsening of symptoms will happen. Some days or activities, however, may require going over your energy envelope.
“Pushing through” is almost never advised. It will typically result in worsening symptoms.
Planning Activities
Plan your day to include rest breaks.
Alternate between physical and mental tasks.
Break down large tasks into smaller, manageable chunks.
Tasks that were once completed all at once may need to broken down over several sessions or days. (Example: You may have been able to clean the whole house in one day, but now you may need to only clean one room at a time, one day at a time).
Prioritize essential activities and postpone non-essential ones.
Rest and Breaks
Take regular rest breaks throughout the day, even if you don't feel tired.
Resting between tasks and assessing symptoms will help recovery and help you not overdo. If symptoms are worsening, this is a sign you have done too much and it is time to stop - possibly for the day even if it is only 10am.
Rest before you become overly fatigued. If you are getting tired it is already past time to rest.
Use timers to remind you to take breaks. Start with 15-30 minutes, depending on the task. Set a timer for your rest break - minimum 5 minutes.
Practice relaxation techniques during breaks, such as deep breathing or meditation.
During rest, you need to be as relaxed as possible. This does not include playing games on the phone or leaning against a wall. Rest should be sitting or lying down quietly with minimal stimulation.
Communication
Communicate your limitations to family, friends, and colleagues.
Ask for help when needed.
If possible, ask others to complete parts of tasks that expend more energy.
Explain the importance of respecting your energy levels.
Adaptive Equipment
Use assistive devices to conserve energy. (example: Use a motorized scooter to go shopping instead of walking around the store, or use a shower chair if the shower is a major trigger for fatigue).
If using mobility aids regularly, consult with a professional for guidance on their appropriate use to prevent injury or increased energy expenditure.
Use organizational aids, notebooks, calendars, planners, etc to help memory and make tasks and planning easier.
Sitting or leaning instead of standing can reduce energy expenditure
Compression Wear, especially from mid-thigh to upper abdomen, can help improve circulation and recovery. Ex: High-waisted bike shorts, workout leggings, and/or abdominal binders
Avoiding PEM Triggers
Recognize Early Signs
Learn to recognize early signs of overexertion.
Common signs include increased fatigue, muscle weakness, cognitive difficulties, and increased pain.
Reduce Stress
Practice stress management techniques, such as mindfulness, meditation, breathing exercises, or Tai Chi/Qi Gong.
Recognize what situations, tasks, or individuals are more taxing and stressful.
Avoid stressful situations when possible. If they are unavoidable, you may need to decrease your energy expenditure elsewhere in the day.
Monitor Your Limits
Pay attention to how different activities affect you.
Adjust your activities as needed based on your response.
Additional Tips
Gradually increase activity if possible and only if not causing PEM.
If PEM arises, assess what activities and energy expenditure contributed to it.
Be patient with yourself; managing CFS and PEM takes time and practice.
Consult with your doctor or a healthcare professional for personalized guidance. Feel free to ask us for more individualized tips.
