Fatigue is one of the most common and most debilitating symptoms for those with long COVID. It is an overwhelming sense of exhaustion that can make it harder for you to do everything you would like to do, including physical, mental and social/emotional tasks and activities.


Fatigue 

Post-COVID or long COVID describes a group of symptoms and complications that affect the nervous system after a confirmed or probably COVID-19 infection.


What is Post-COVID or long COVID?

What is Post-COVID or Long COVID?

When you use more energy than you have on a given day, this can result in a flare-up of your long COVID symptoms. Pacing is about spreading out your energy across activities that you both need to do and want to do.

Pacing

PEM stands for post-exertional malaise. It is defined as an increase in symptoms (for example, fatigue, brain fog, breathlessness, headaches, body aches) after what doesn’t seem like a lot of activity.


Post-Exertional Malaise

Your primary care provider (family doctor or nurse practitioner) is a good point person for helping you navigate the health system when you have long COVID.

Navigating the Health Care System

With fatigue and post-exertional malaise, you will have a very limited amount of energy each day and a sense that if you push to get more done, you’ll experience a “crash.” The only way to increase energy in your “energy bank account” is by adapting your life to allow for more time to slow down and rest. 

Energy Conservation 

Dysautonomia is disruption in the balance between the parasympathetic and sympathetic nervous systems. In dysautonomia, the pull toward fight or flight can become stronger.  
In long COVID, we think that dysautonomis is the underlying cause of postural orthostatic tachycardia syndrome (POTS) and inappropriate sinus tachycardia.

Dysautonomia

Heart rate monitoring involves tracking your heart rate throughout each day to get an idea of how different activities affect you. Your heart rate can give you some useful information that can help you avoid over-exerting yourself without realizing it and help prevent you from crashing.

Heart Rate Monitoring

Breath work is about doing breathing exercises or techniques where you change your breathing pattern. It can involve breathing slower, drawing the air down into the lower parts of the lungs and holding your breath. Many people with long COVID have been found to have a disrupted breathing pattern where they breathe primarily into just the upper chest and breathe too quickly.

Breath Work + long COVID

Breath Work

With long COVID, there is usually no damage to the brain tissue. However, long COVID can affect how the brain executes tasks on a chemical and cellular level.


Brain Fog and Cognitive Issues 

Changes in your mental health are common in long COVID. Recovering from long COVID can be stressful, especially when symptoms last a long time. It is common to have feelings of stress, anxiety (worry, fear) or depression (low mood, sadness).  


Mental Health

Many people believe that the fatigue and disability experienced by those with long COVID is simply a result of deconditioning or inactivity. However, the fatigue that comes with long COVID is a result of physiological changes to the body. An approach called symptom titrated activity progression is typically recommended. 

Return to Physical Activity

Returning to Physical Activity

You don’t need to be 100% recovered from long COVID to consider a return to work or school. However, if you’re still experiencing symptom flare ups and set-backs, or push/crash cycle, it may not be recommended to increase your activities or plan/start a gradual return to work.

Returning to Work

POTS stands for postural orthostatic tachycardia syndrome. Symptoms can include lightheadedness, brain fog, palpitations, breathlessness, and other symptoms when upright. These symptoms typically improve somewhat when lying down. 
POTS symptoms can fluctuate over time, change throughout the day, and are often worse in the morning and on days with more long COVID symptoms. 

Postural Orthostatic Tachycardia Syndrome (POTS) Management

Your caregivers and health care providers may not be able to offer you a clear and definitive plan for assessing or treating your symptoms. Right now, there isn’t one specific treatment for long COVID. Most people follow a self-guided recovery path and use a combination of educational resources, tools, and symptoms management strategies. 

Becoming a Self Manager

Becoming a Self-Manager

People with long COVID can experience a heightened state of alertness within their nervous system, which makes falling asleep, staying asleep, or getting into a deep sleep state more difficult. Sleep is often a key factor in progressing your recovery from long COVID.


Sleep Hygiene

Breathlessness describes feeling winded or short of breath. It may feel as though you can’t take a deep breath or get enough air.  It is common for people recovering from COVID-19 to feel breathless. However, in most cases, the actual amount of oxygen in the blood is normal.

Breathlessness

Many people lose their appetite and eat less when they have long COVID.
Eating well is important as your body needs energy, protein, vitamins, and minerals to help you recover from long COVID. 

Nutrition

Increased headaches and other pains are common symptoms after a COVID infection.


Headaches + long COVID

Headaches

These tools and worksheets can help you learn how to use pacing techniques during your recovery from long COVID and increase your energy over time. 

Tools and Worksheets

There are several different types of chest pain you might experience following a COVID-19 infection. Each type of chest pain can be serious, and you should always see a doctor if this is the first time you are experiencing this chest pain or if you chest pain becomes more frequent.

Chest Pain + long COVID

Chest Pain 

Some patients with long COVID experience a higher heart rate than what is normal or expected for them. As a result, they may experience palpitations after their body experiences even just a little stress or activity.


Palpitations

There are two types of dizziness that you might experience following a COVID-19 infection. These are vertigo and lightheadness.


Dizziness

A COVID-19 infection can cause you to lose your taste or smell. As these two sensations work together, many people experience both being affected. These changes may cause your favorite foods to taste and smell differently following your COVID illness.

Taste and Smell Changes

Just as you may be careful about buying a home, car, or appliance, it is important to be an informed consumer of health information and services.  Health websites sponsored by federal government agencies, large professional organizations and well known medical schools are usually good sources of information. 

Becoming an Informed Customer

Ringing in the ear, or tinnitus, can be a troublesome symptom associated with long COVID. People usually describe it as a whistling, ringing, or white noise sound. The sound can repeat constantly or change, and it can become worse later in the day.

Ringing in the Ears

Many COVID-19 survivors experience hair loss after their initial COVID infection.


Hair Loss + long COVID

Hair Loss

PC-ICCN stands for Post-COVID-19 Interdisciplinary Clinical Care Network. It was established in the Fall of 2020 and includes clinicians, academics, and patients who are committed to long COVID recovery care in B.C. Our goal is to support the best possible outcomes for people recovering from persistent  symptoms of long COVID-19. 

What is PC-ICCN?

Long COVID research is especially important and everyone’s contributions are valuable. When there are diverse people participating in research, this supports the growth of knowledge that reflects the community we live in.

MyGuide: Long COVID

Resource Catalogue