Pacing and Post Exertional Malaise
Post Exertional Malaise (PEM) is one criteria of ME diagnosis defined by a worsening of symptoms occurring after physical, mental or emotional exertion. As an adjunct to the clinical guidance of your physician, reducing PEM (also known as “crashes”), can improve baseline functionality of CFS patients. Avoiding PEM can be challenging. This is designed to help patients build crash avoidance plans, monitor triggers, and understand symptoms to enhance recovery. Post Exertional Malaise (PEM) is one criteria of ME diagnosis defined by a worsening of symptoms occurring after physical, mental or emotional exertion. As an adjunct to the clinical guidance of your physician, reducing PEM (also known as “crashes”), can improve baseline functionality of CFS patients. Avoiding PEM can be challenging. This is designed to help patients build crash avoidance plans, monitor triggers, and understand symptoms to enhance recovery.
Individuals with Myalgic Encephalomyelitis (ME) have little stamina and endurance, and pose a challenge for nursing professionals. The Energy Envelope Theory, which poses that maintaining expended energy levels consistent with available energy levels may reduce the frequency and severity of symptoms, is particularly useful when working with clients with ME. Anecdotal support from the client community for this theory supports its use as a management tool for ME but little formal research has been done in this area. In this study, a daily energy quotient was established by dividing the expended energy level by the perceived energy level and multiplying by 100. It was predicted that those participants who expended energy beyond their level of perceived energy would have more severe fatigue and symptoms and lower levels of physical and mental functioning. Findings are congruent with the Energy Envelope Theory as they indicated that the daily energy quotient was related to several indices of functioning including depression, anxiety, fatigue, pain, quality of life, and disability. The overall results provide support for a strategy health care professionals can use when working with clients with ME
Learning To Pace – Your Guide To Managing Your Condition
To date the most effective tool we have to managing ME is the method of pacing. For not only is it the goal of pacing to live within your individual energy envelope, but to gradually increase said envelope over time. The aim is to give you a sense of control over your illness and your life.
So what is pacing? Put very simply, pacing is taking the daily activities one must or want to do, be they mental/cognitive and/or physical, dividing them up into manageable portions and performing those that fit with the energy you have available for that day.
By pacing your activities within your energy envelope (the energy you find yourself with on any particular day), thus not exacerbating your symptoms it is expected that over time your energy envelope will gradually increase. By avoiding the “crash” and “burn” cycles and making your energy expenditure is leveled and can assist you to avoid set-backs.
The average person with Myalgic Encephalomyelitis has an energy envelope of around three hours a day. To get an idea of your overall energy envelope, estimate how many hours a day you can be active without intensifying your symptoms. But it’s also helpful to understand your energy profile and limits in more detail. Just as activities come in many forms—from walking to reading to phone conversations—so, too, do our tolerance limits for each. By zeroing in on each type of activity and asking yourself a few questions, you can begin to build a detailed profile of your energy envelope.
Physical Activity:
We all have limits for various activities, such as housework, shopping, driving, standing and exercise. You can determine your envelope for each by focusing on one activity at a time. For example, if you think your envelope for housework is 10 minutes, try that much and then ask yourself how you’re feeling. If you feel OK, you may be able to do more (but increase slowly!). If you’re feeling poorly, try less. Soon you’ll get a picture of how much of your primary physical activities you can do without worsening your the severity of your symptoms.
Mental activity:
Activities requiring concentration, like reading, working on the computer or balancing a checkbook also make demands on our energy. Questions to help define your mental energy envelope include: How many hours per day can I spend on mental activity without making my CFS symptoms worse? How long can I spend in a single session? What is my best time of day for mental work? Do I have different limits for different mental activities (reading vs. computer work)?
Social activity:
Consider the time you spend interacting with other people, either in person or on the phone, and assess that energy toll. Ask yourself: How much time can I spend with people without making my symptoms worse? How long can I talk on the phone without making my symptoms worse? Is the amount of time dependent on the specific people involved? You may tolerate only a short time with some people, but can spend more time with others. For in-person meetings, you might also ask yourself whether the setting makes a difference. Meeting in a public place or with a large group may intensify your symptoms, but meeting privately or with a small group may be alright.
Seeing your energy as something in limited supply provides a
motivation to set priorities and to make informed decisions about how
to spend a precious resource.
Basic Guidelines
The aim of pacing is to remain as active as possible but to avoid the relapses resulting from over-exertion. Patients may try to increase their activity levels every few days, as long as they remain “within the limitations which the disease imposes.” In practice, pacing means stopping an activity when you feel you have reached that point where pleasant tiredness becomes unpleasant, where arms or legs begin to feel weak, or where one starts to feel unwell or sick. Some might find it more helpful to rest for a while at the first sign of muscle weakness.
Steps to avoid Post-Exertional Malaise
Find your causes and barriers. Refer to the list of causes and barriers. Read through and check off the causes and barriers that apply to you. This template is not fully exhaustive, so you may find that you have causes and barriers that are not on the list.
Track your Progress.
Tracking is an excellent way to better understand how your activities and strategies correlate with your symptoms. It provides a valuable way for families, friends and caregivers to understand how a patient is doing and what kind of support is needed at different times.
Causes of PEM Barriers to Avoiding PEM Successful Strategies
• Physical over-exertion
• Mental over-exertion
• Emotional over-exertion
• Sleep regulation
• Diet and nutrition
• Other medical issues
Barriers to avoiding PEM
• No signal of coming PEM
• Lack of a support team
• Maintaining motivation
• Psychological challenges
• Social pressure
• Challenges of an invisible illness
• Financial pressure
• Logistics in managing the disease
Successful Strategies
• Plan your day
• Pace yourself
• Learn your health patterns
• Build your support community
• Give your body good nutrition
• Ensure appropriate sleep
• Maintain emotional health
• Treat other medical conditions
Typical Causes of PEM
Doing too much in a day: driving, standing, work, childcare, social activity, etc.
Doing anything fast: walking, chores, cleaning, cooking, etc.
Anything that drives a significant (10 BPM) jump in heart rate
Sudden changes in temperature: either hot or cold
Other physical challenges: menstrual cycle, flu shot, blood draws, altitude
Mental Over-Exertion
Too much time mentally exerting: reading, studying, working, etc.
Concentrating too much: pushing hard on particularly difficult tasks
Mental exertion after physical exertion: compounded impact
Emotional Over-Exertion
Emotional hit: death of loved one or pet; huge loss of any kind
Negative emotional burst: such as arguing with a spouse
Strong positive emotion: such as watching a favorite sports team win
Increased stress: prolonged or episodic re: financial, work, school, etc.
Anxious thoughts: the emotional exertion due to anxiety
Sensory overload: parties, movies, lots of people, lots of noise, etc.
Sleep Regulation
Inability to create a schedule that works best. Waking up too early or too late.
Not sleeping the right number of hours each night.
Sleep disruptions: noise, light, night sweats, insomnia
Managing time change during travel
Diet and Nutrition
Too many carbs/sugar: alcohol, bread, heavily-processed grains, sweets
Not enough healthy food: protein, vegetables, fiber, whole grains, healthy fats
Low blood sugar from skipping a meal or not eating at the right time
Dehydration; low minerals/electrolytes
Try specific diets: For example, gluten free, dairy free, low carb/sugar
Determine what works best for your body
Carry healthy snacks to avoid low blood sugar
Consider many small meals throughout the day
Ensure hydration. Bring water, track hydration with app, use flavor packets
Eat when you need to eat. Not what’s best for the family or coworkers
Never skip a meal, even if nauseous.
Always have food you love to eat available, to eat when not feeling well
Create meal plans in advance: Plan for a week to reduce shopping and stress
Stock up: Make sure the pantry and freezer have long-lasting options
Other Medical Conditions
Anxiety: Increased episodes or baseline; could include panic attacks
Getting Sick: Typical cold or flu
Pain: Managing chronic pain
GI issues: that cause nausea, digestion challenges, or constipation (e.g. SIBO)
Adjustments to medications: May cause a decrease in overall health
Positional Changes: with or without formal orthostatic intolerance diagnosis
Strategies for Avoiding Post-Exertional Malaise
Do less than you think you can and don’t push to maximize output. Have a daily activity plan and break tasks into smaller pieces; take breaks; prioritize essential activities; plan strenuous tasks for times with energy. Schedule Rest: Even if you don’t think it is needed. Plan the week: schedule rest before and/or after big activities.
Some specialists recommend keeping a diary.
This should include details of activities and symptoms, as well as food eaten and any stressful events. As most relapses do not occur at random, diaries can help you to identify triggers and reveal the relationship between exertion and symptoms. In the beginning, it is also useful to include an assessment of one’s emotional state, as stress saps your energy and undermines your immune system.
Heart Rate Monitor
People with ME usually find pacing the best strategy to try to avoid crashes and give the best chance of improvement over time. Some use activity diaries, others use step counters (pedometer/actometer), others use heart rate monitoring with the aim of using it to alert you to rises that take you over the aerobic threshold. This tells you when to stop and take a break rather than pushing through and trying to complete an activity.
A common way of calculating a personal threshold is (220 - age in years) multiplied by 0.6.
References:
Learning to Pace:
Viral Infections
Symptom & Severity Chart
The ME Association UK
Sally K Burch