by Adam Brown BScPT MClScPT FCAMPT
updated June 30, 2021
The COVID-19 pandemic has been impacting people’s health across the globe since early 2020. In some areas, we are beginning to see changes that may signal a better level of control over the spread of this terrible disease. But for many who contracted COVID-19, the end is still a long way off. I am talking about those people suffering from Long COVID (Long Haulers) or post-COVID syndrome. Given the relatively short time that researchers and health care providers have had to study long COVID, we don’t know how “long” this condition will end up impacting its victims. For more on what Long COVID is, please read our recent article HERE.
At this point, there is no cure for Long COVID. However, we are seeing people who improve and recover, while others continue to suffer long term effects with waves of debilitating symptoms. In time, perhaps we can unlock some of the mysteries of why some patients recover while others do not.
There are striking similarities between Long COVID and myalgic encephalomyelitis (formerly referred to as Chronic fatigue Syndrome and noted as ME/CFS). For many patients the symptoms are similar and importantly, the behaviour of symptoms is similar. This has led health care professionals to consult ME/CFS experts and literature for ideas on how to help people. One of the keys to managing ME/CFS is called pacing.
What is Pacing?
Pacing refers to controlling energy expenditure in a way that minimizes symptoms and reduces the likelihood of experiencing a “crash”, characterized by crippling fatigue and worsening of familiar symptoms that can last days or weeks. Pacing teaches patients how to adapt to what their bodies can handle while getting the most function possible under the circumstances.
Each long hauler’s symptoms, and capacity for physical and mental exertion is different. So for pacing to be effective it must be customized to the person’s condition and stage of recovery. There is no “one size fits all” approach.
What is post-exertional malaise?
Many ME/CFS patients suffer from post-exertional malaise. This term refers to the severe fatigue and worsening of symptoms that can occur a few hours and up to three days after physical or mental exertion that is beyond the person’s current tolerance. It is important to note that this does not refer to simply ‘feeling tired’. The fatigue and other symptoms brought on from post-exertional malaise are severe, and often prevent patients from being able to do anything at all. It is also important to recognize that this fatigue is not due to deconditioning. This idea can lead well meaning health care providers to encourage a MORE active approach which will only worsen the problem.
It is not obvious when engaged in physical or mental activity that a patient is ‘overdoing it’. The delayed nature of post-exertional malaise means that patients can only learn how much activity is too much, after the fact. This makes interpretation of symptoms and activity modification very challenging and it requires a structured approach to treatment.
What does pacing do?
Pacing allows patients to use their physical and mental capabilities in a way that avoids worsening symptoms and experiencing a crash. It teaches patients how to interpret their symptoms and adjust to their current capabilities without shutting down activity completely. A complete shutdown of activity over a prolonged period will lead to poor health and severe deconditioning. However, a temporary shut down of activity is sometimes reasonable and necessary to get symptoms under control.
How do I start with pacing?
The process of pacing requires a little trial and error to find your ‘sweet spot’. The process involves finding a baseline of activity that patients are tolerating well. This may involve a week or so employing maximum pacing strategies to establish a symptom baseline.
Keeping some record of symptoms and physical activity can be very helpful. This information can be used to interpret how activity is impacting symptoms.
Some strategies that patients find helpful when pacing are:
- Consider writing out all of the tasks that you are currently doing. Then separate them into categories of what you NEED to do (think eating, bathing), what you SHOULD do and what you WANT to do. When symptoms are not under control and you need to find a new baseline, you may be restricted to the NEED column.
- Throughout the day, take frequent breaks. These breaks must be taken BEFORE symptoms start. While on a break it should be both physical and cognitive rest. Cognitive energy expenditure can be as fatiguing as physical activity.
- Consider modifying tasks. Small changes like sitting while preparing a meal can help. Look for opportunities to modify your environment and tasks to reduce the total energy required.
- Switch activities often. It’s better to complete a lengthy task in a few efforts with breaks or lower impact tasks interspersed.
- Track your symptoms and adjust accordingly.
- When considering an increase in your daily activity, use very small increments and wait several days to interpret the impact on symptoms before any further increase.
How do we help people with Long COVID get the most out of pacing?
At Cornerstone Physiotherapy we have developed a program that can help take some of the mystery out of the pacing process. It is designed to get the most out of the patient’s current level of recovery while controlling symptoms and safely progressing activity when the time is right. Think of the program as “fine tuning” the pacing process.
We use wearable technology (Apple watch, Fitbit etc.) to measure activity and to provide our clinicians with information on how your body is responding. We interpret metrics like active calories, resting heart rate, heart rate variability, body temperature and breathing rate to inform the pacing process. We also collect patient’s self reported symptoms and cross reference them with the biometric data. With all of this information being automatically collected, and our clinicians are trained to help patients interpret it. We are able to optimize a patient’s activity level and progress them while monitoring for signs of excess physical stress.
CLICK HERE to learn more about Cornerstone’s Long COVID Rehabilitation Program.
Pacing is a key strategy for most patients recovering from Long COVID. As recovery progresses we can begin to use the same methods to undertake more traditional and structured exercise therapy in a safe and methodical way.
To anyone dealing with symptoms of Long COVID, we are here to help. We understand that it is frustrating and difficult to have a problem that is so poorly understood. We are committed to helping using the best possible evidence as it becomes available. We sincerely hope this resource and our other long COVID resources can help.
Questions? We're happy to help!
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