Symptoms and management tips

Fatigue is a very common symptom for people with long COVID. This type of fatigue is not just feeling tired after having a busy week or doing intense exercise, it is extreme exhaustion and lethargy. For people living with long COVID, fatigue may be a constant symptom, resulting in not being able to do everyday activities, or it may be variable, fluctuating after times of high stress or when doing activities with high energy demands.

The first step in managing fatigue is acknowledging it is real and that it significantly impacts your health and wellbeing. Other tips for managing fatigue include:

• Use pacing to break activities down into smaller, more manageable tasks.
• Establish good sleep routines.
• Try relaxation techniques such as meditation or having a relaxing bath.
• Eat nutritious food including a range of vegetables and fruits, lean protein and grains.
• After checking in with your healthcare professional, try some light physical activity for brief periods such as yoga or tai chi for brief periods at first.
• See talking to your healthcare professional and talking to family and friends for tips on communicating how fatigue is affecting you.

Remember that many things may contribute to your fatigue. Some examples include:

1. Physical fatigue: Physical fatigue arises after doing physical activity and can result in muscle soreness and exhaustion.
2. Mental and cognitive fatigue: The most common sign of mental and cognitive fatigue is when you can’t process information or concentrate as usual (often referred to as “brain fog”). This may include not being able to find words or forgetting things. It’s important to remember that even things you may not consider to be tiring, such as reading the paper or looking at your phone, may be contributing to your fatigue.
3. Social fatigue: Even though it is important to maintain relationships with your friends and family, you may find spending time socialising can cause you to feel fatigued. You may want to consider meeting friends in a place where you can sit comfortably and let them know when you need to get some rest. See talking to family and friends for some more tips on explaining how Long COVID is affecting you.

Some people with long COVID experience Post-Exertional Symptom Exacerbation (PESE), also known as post-exertional malaise (PEM). PESE is different to fatigue. You may have the energy to do something, but then find it will have negative effects around 12 to 72 hours after the activity. For example, you may do the grocery shopping and feel fine at the time, but then a day later experience a flare-up of your long COVID symptoms. Often this flare up will be very disabling and you may not be able to undertake your daily activities or feel like you can get out of bed.

• Traditional rehabilitation programs are not suitable for patients experiencing PESE. If you suspect that you may have PESE it is important to talk to your healthcare professional to receive tailored advice on managing your symptoms.

Energy conservation is an effective way to manage PESE. It involves recognising what activities are making you tired. A good way to do this is by using a diary for a few weeks to keep track of what you did and how it affected you, and then look at patterns (e.g., I experience an increase in symptoms during the day if I go for a walk in the morning, but if I go for a walk at night, I don’t have the same issues).

TIP: although doing a symptom diary can be helpful in the early stages of managing your PESE, keep it simple and keep in mind that tracking your activity and filling one out may be adding to your overall levels of fatigue. Once you know your patterns and triggers it’s good to manage these without tracking if possible.

Once you know what activities are causing you to fatigue more quickly, you can map out a plan to best use your available energy each day. A good method for doing this is by using The Three Ps: Pace, Plan and Prioritise.

Pace: Pacing means taking breaks in between activities, and not doing anything strenuous for an extended period. A good way to do this is by breaking up your daily activities into small and manageable tasks. Try to pace yourself to avoid pushing your body to exhaustion.

Plan: To be able to pace well, effective planning is needed. Try to plan your day or week in advance and break up the activities that require more energy into smaller tasks. E.g., instead of spending a whole day cleaning the kitchen, first cleaning the sink and wipe down benchtops, then have a rest before emptying the dishwasher or wiping down the stove.

Prioritise: It is important to ensure your essential tasks are planned for, and only then add in any other tasks. If you don’t have enough time to rest in between tasks, maybe move something to the next week or consider removing it from your plans altogether.

This diagram shows how pacing can work throughout the course of a day. The dotted COVID energy threshold line is the energy level that you are aiming to stay below, if possible. This is unique to you and will require some trial and error to understand your threshold. The pacing line shows how, with pacing, your energy exertion will go up and down over the course of a day, but ideally always stay under the COVID energy threshold. The not pacing example shows how if you expend energy above your long COVID symptom threshold it will lead to PESE.

TIP: there are apps available to help monitor symptoms and plan activities. Keep in mind that using these apps too much may add to your mental load and lead to further fatigue. Try to only check in with them once per day to keep track. Once you have a good idea of what triggers your fatigue, it may be a good idea to stop using them altogether.

Remember that many things may contribute to your Post-Exertional Symptom Exacerbations (PESE). Some examples include:

1. Physical fatigue: Physical fatigue arises after doing physical activity and can result in muscle soreness and exhaustion.
2. Mental and cognitive fatigue: The most common sign of mental and cognitive fatigue is when you can’t process information or concentrate as usual (often referred to as “brain fog”). This may include not being able to find words or forgetting things. It’s important to remember that even things you may not consider to be tiring, such as reading the paper or looking at your phone, may be contributing to your fatigue.
3. Social fatigue: Even though it is important to maintain relationships with your friends and family, you may find spending time socialising can cause you to feel fatigued. You may want to consider meeting friends in a place where you can sit comfortably and let them know when you need to get some rest. See talking to family and friends for some more tips on explaining how Long COVID is affecting you.

Breathlessness is a common symptom that many people experience after having COVID-19. This is often because of the way that the virus affects your lungs, airways and respiratory muscles. If you are less active because you are unwell it may cause your muscles to become weak and in turn your breathlessness to get worse. The good news is that this negative cycle can be turned into a positive one, and by doing some activity your muscles will regain their strength and your breathlessness should improve.

• All people with ongoing breathlessness should be evaluated by a healthcare professional. This is particularly important if the breathless is present at rest or with minimal activity, or if it suddenly worsens. People who are older or have underlying medical conditions such as asthma, chronic obstructive pulmonary disease (COPD) or heart disease should be evaluated by a doctor if they experience new or different breathlessness.
• If no specific cause for your breathlessness is found your GP may refer you to a respiratory physiotherapist for further assessment and management.

It is helpful to learn practical ways to manage your breathlessness such as breathing control exercises. Some people may benefit from a structured pulmonary rehabilitation program to ease symptoms and improve their ability to exercise. Discuss with your GP whether a pulmonary rehabilitation program may be helpful for you.

If you have a pre-existing lung condition such as asthma or COPD having a written action plan can ensure you have optimal use of your medications to manage your condition. A written action plan, developed with your GP or respiratory healthcare professional can help to guide your management. You can download a COPD action plan template or an asthma action plan template to take to your next appointment.

Breathing control exercises

Prior to having COVID-19 you may not have been as aware of your breathing as you are now. The body’s normal reaction when breathlessness occurs is to breathe faster and shallower than usual. However, this is not an effective way to gain control of your breathing. If you are experiencing breathlessness or feeling like you are working harder to breathe than usual it may take up a lot of your energy. However, there are breathing techniques that can help you feel more in control, manage the uncomfortable feeling of breathlessness and improve your energy levels.

Breathing control promotes efficient breathing patterns and deters rapid breathing. Here are some different breathing techniques that can enhance your breathing.

• Watch your stomach rise as you breathe in
• Relax your stomach as you let yourself breathe out
• Concentrate on the breath out, the in breath will take care of itself

You can visualise this technique by imagining yourself breathing around a rectangle. Focus on taking long, slow breaths whilst letting the air completely out followed by a short breath in.

Paced breathing: This breathing technique is where you use the rhythm of your footsteps to pace your breathing. You may have one step to breathe in and a couple to breathe out, for example:

• Breathe in on your left foot
• Take a couple of steps
• Breathe out on your right foot

Try using a handheld fan: Many people find using a battery-operated fan can help control breathlessness, and research has shown that a cool draft of air from a hand-held fan can be very effective. It works by circulating cool air over the face which helps to reduce breathlessness. This video shows how to use a handheld fan effectively.

Many people find using a battery-operated fan can help control breathlessness, and research has shown that a cool draft of air from a hand-held fan can be very effective. It works by circulating cool air over the face which helps to reduce breathlessness. This video shows how to use a handheld fan effectively.

Having a persistent cough can be very debilitating and distressing. It can affect your daily activities, and you may feel more tired and experience increased pain and breathlessness, anxiety and difficulty sleeping. A cough can vary from person to person and may be dry or moist. See here for more information on chronic cough.

Cough symptoms should be investigated with your healthcare professional.

Pre-existing conditions: The virus that causes long COVID typically causes inflammation within the airways. This inflammation has been shown to last for many months and can result in worsening of pre-existing airway problems that will worsen cough symptoms. Treatment of these conditions may help to improve your cough. If you have hayfever or sinusitis, asthma, COPD, another chronic lung disease or reflux, speak to your healthcare professional to see if your treatment is optimal.

Practical tips to reduce coughing:

• Keep your throat well hydrated, by regularly sipping water.
•  Avoid caffeine or alcohol that can dry your throat.
• Try and breathe through your nose, if possible.
• Avoid speaking for long periods or take breaks to reduce throat irritation.
• If you need to cough but don’t have a drink nearby, try swallowing repeatedly instead, this mimics the act of sipping water.
• Smoking or vaping will worsen any cough, stopping will help to reduce your cough.

Excessive and chronic coughing may also change the quality of your voice.

If your cough is not improving over time, your GP may be able to refer you to a speech pathologist. Speech pathologists can help in the management of symptoms such as chronic cough, hoarse voice, difficulty swallowing or word finding difficulties.

The term “brain fog” refers to the feeling of having impaired thought processing, as if your brain is shrouded in fog! This makes it difficult for you to process information or to concentrate as you usually would. This may include difficulty in mental arithmetic, struggling to plan your day or solve problems, remembering recent events and having difficulty finding words. These “cognitive impairments” will often make it much harder for you to perform your usual work, study or daily activities. If you are having these difficulties, it is important to communicate this with your family, friends, and/or employer to ensure they understand how brain fog is affecting you and how it may be affecting your work or study.

There are some strategies that may help ease your symptoms.

1. Changes that can help improve memory:- Manage your fatigue: often when you are fatigued other symptoms such as brain fog are worsened. When you plan your day, you may want to schedule in your thinking tasks for when you have the most energy, such as first thing in the morning. Reduce anxiety levels, minimize alcohol intake, and maintain a healthy diet.
2. Adopt short-term memory strategies:- Reduce distractions: if possible, try to do your work or study in a quiet place, with minimal distractions such as music, other people or loud noises. Slow down: if possible, try to do one task at a time to avoid making mistakes. Use simple communication: when you are unable to find the exact word or lose your train of thought in a conversation, keep it simple and find a different way to say it. Visualise and describe the object or idea, this can help you in finding the word quicker. If you do lose your train of thought in a conversation, don’t be embarrassed to ask for a prompt from the person you’re speaking with.
3. Use external memory aids:- Take notes: using lists or a diary to keep track can be useful when your memory is less reliable. Use your phone to set reminders to remind you of upcoming activities.

Cardiac symptoms such as palpitations and chest pain are common symptoms of long COVID. Often these symptoms are not a sign of serious disease, however the best course of action to take if you are experiencing them is to talk to your healthcare professional.

Heart palpitations are when you become aware of your heart beating. This can happen when your heart starts beating faster or harder. In some cases, people may have a feeling of their heart missing beats or “fluttering.” Palpitations can make you feel anxious, but they are usually not serious and can happen to anyone. Some of the common causes could include being worried about something, consuming caffeinated drinks such as coffee, energy drinks, cola or tea, alcohol, strenuous exercise or being unwell (such as when you have a cold). If your palpitations do not last very long or can be linked to a cause such as those listed above, you will not usually need to do anything. You should see a healthcare professional if you have new palpitations, or if your palpitations do not get better, seem to last a very long time, are more frequent than usual, or are worrying you.

There are many things that can cause chest pain, and some are more concerning than others. For example, chest discomfort may be the result of coughing, reflux or muscle or joint problems. In the case of muscle or joint problems, the area is usually tender to touch, and you might notice it feels worse when you move or stretch the area.

Another type of chest pain is called pleuritic pain. Pleuritic pain is sharp and occurs when you take a deep breath in. Angina is a chest pain that occurs when your heart doesn’t get enough blood or oxygen. Angina symptoms can be variable and may present as chest tightness or heaviness rather than pain. Some people also experience pain in other areas such as their arm, neck, jaw or even between their shoulder blades.

It can be hard to know whether your chest pain is related to a heart or lung problem (or even heartburn) so if you are experiencing chest pain, it is important to discuss this with your healthcare professional.

You should seek urgent medical care by calling the ambulance on triple zero (000):

• If you have palpitations while also experiencing other symptoms such as shortness of breath, chest pain or dizziness.
• If you have chest pains that last a long time, or you are worried you might be having a heart attack.

Postural Orthostatic Tachycardia Syndrome (known as POTS) is a form of chronic orthostatic intolerance (inability to remain upright without symptoms) and dysautonomia (autonomic nervous system disorder). POTS is often triggered by viral infections (like COVID-19). If you have POTS, when you stand up or move into an upright position, you may experience an excessive increase in heart rate and debilitating symptoms such as dizziness, fainting, shortness of breath, chest pain, and lightheadedness.

Evidence on management of POTS is varied, but the following may help your symptoms:

• Establish good sleep routines.
• Try relaxation techniques such as meditation or yoga.
• Identify and avoid triggers.
• Increase water intake to 2-3L per day.
• Increase your salt and magnesium intake.
• See if you can do activities in a leaning or resting posture, rather than upright.
• Try having small, frequent meals.
• Engage in low grade exercise under direction of a healthcare professional.

For most people, it is unlikely that your POTS symptoms are a sign of serious cardiac disease, however you should talk to your healthcare professional to develop a tailored management plan. They will be able to prescribe medications which may help, if appropriate.

After being unwell, you may notice changes in your sleep patterns. This may include finding it difficult to fall asleep, waking up during the night and not being able to get back to sleep, or waking up and not feeling refreshed.

There are many reasons why long COVID may result in sleep disturbance. These include:

• Disruption to usual routines.
• Altered circadian rhythm.
• Coughing or pain symptoms disrupting sleep.
• Sleeping during the day due to fatigue.
• Change in lifestyle with less physical exercise and altered diet.
• Greater stress and anxiety with ill-health.
• Work/study interruptions.

Fatigue can also result in you feeling tired all the time, regardless of how much sleep you’re getting. Here are some tips to help you sleep better:

• Drink enough water during the day but avoid drinking liquids in the 2 hours prior to bed.
• Try to get some sunlight first thing in the morning.
• Light exercise such as yoga or tai chi during the morning or day (not in the evening)
• Try not to sleep during the day, but if you have to nap, limit to 20-30minutes in the afternoon.
• If you experience terrible fatigue and often lay down during the day, avoid your bed, so as to not associate your bed with simply lying down rather than sleeping.
• Avoid eating just before bedtime (not within 2-3 hours of sleep).
• A few hours before bedtime reduce your intake of: Reduce the intake of the following a few hours before bedtime:
  • sugary foods
  • caffeinated drinks
  • alcohol
• Smoking cigarettes or e-cigarettes/vapes will also disturb your sleep and should be avoided. See more information about this on our quitting smoking page.

It may also be beneficial to develop a regular sleep routine that works for you to give you the best chance of getting a good night’s sleep. This can include:

• Aim for 7-9 hours of sleep each night, and to go to bed and wake up around the same time every day.
• Create a calm environment by turning the lights down, reading, listening to music, or listening to an audiobook before bedtime.
• Keep the temperature in your room cool.
• Avoid using anything with a screen before bedtime (for example mobile phone, tablet or computer screen).

It’s important to recognise that feeling flat and worrying about your health is a normal reaction to being diagnosed with something that many people don’t yet understand. You may have frustrating conversations with people (possibly including healthcare professionals) who dismiss your symptoms, or struggle to adjust to a change in your routines. The emotional impact of having to combat social attitudes and stigma can be significant. Knowing this and focusing on your emotional wellness can be a very important component of managing your overall wellbeing.

TIP: Maintain perspective – when feeling anxious or worried about the current situation, it may help to remember healthcare professionals and researchers are working hard to help those in need and find effective treatments.

When you are feeling worried, it can cause physical changes to your body, such as:

• Increased heart rate
• Faster breathing
• Sweating
• Stomach pains
• Repetitive intrusive thoughts

Looking after your emotional wellbeing

• When you are feeling anxious or stressed, you may find yourself breathing more quickly. While slow deep breathing techniques are useful for most people, they may not be relaxing if your long COVID symptoms include breathlessness. Lung Foundation Australia have a series of videos and resources available to guide you through mindfulness and self-compassion practices.
• Language and thoughts are powerful contributors to emotions so try to be aware of your own self-talk. This involves recognising when you have unhelpful thoughts and being able to turn them into balanced thoughts. For example, if you have a thought along the lines of “I’ll never get better”, it can be helpful to reframe this thought to “many people with long COVID have found ways to manage their symptoms”.
• If you wake up and feel low in energy, try to avoid telling yourself that you’re having a bad day. Reframe it as a low energy morning and you may feel more up for an activity by the afternoon. Building this ‘wriggle room’ into self-talk opens the possibility for you to feel different later.

Even once you are effectively using techniques to manage your mental wellbeing, it is important to recognise that some days will be better than others. On the days when you feel more worried or stressed be sure to reach out to your support networks such as family and friends.

Long COVID is an inflammatory condition that may result in new pain in your joints or elsewhere in your body. This pain may be located in specific areas of your body (e.g., headaches or joint pain) or more generalised. The effects of feeling persistent pain can be exhausting and can affect your fatigue levels, mood, and ability to concentrate.

Pain can be managed in various ways, and it’s always best to consult with your healthcare professional for their advice before undergoing any specific treatments. While waiting for a consultation, over the counter medications such as paracetamol or ibuprofen can be taken with food to help manage pain. Be sure to speak to your pharmacist and read the packet of these medicines to avoid exceeding the recommended dose per day or taking them regularly for too long.

Quality sleep, healthy lifestyle choices and relaxation techniques may also aid in pain management.

Gastrointestinal symptoms are fairly common after having an acute COVID-19 infection. This includes symptoms such as heartburn, constipation, diarrhoea, and abdominal pain. Many people report these symptoms declining over time. Sometimes they may be linked to mental health symptoms such anxiety. See the emotional wellbeing section for some tips for managing worries.

If you are concerned about your gastrointestinal symptoms, it is important to discuss this with your healthcare professional. In the meantime, you may want to try the following self-management strategies:

• Avoid foods that trigger your symptoms.
• Introduce more foods that are high in fibre.
• Drink plenty of water.
• Aim to get quality sleep.
• Eat and drink in an upright and seated position.
• Consider taking medicine or other treatments to help with your symptoms.

Before returning to exercise, it is important to talk to a healthcare professional. Everyone’s recovery looks different, and having a tailored exercise program will help to ensure that you don’t over or under exercise.  It’s likely that you will have to reintroduce exercise into your weekly plans slowly, but gradually you should be able to build your capacity again. See the pacing section for more information to help you manage this. Lung Foundation Australia have a maintaining movement video series which may be helpful.

Some long COVID symptoms, such as fatigue, may make it harder to ensure you keep a healthy diet and stay well hydrated. Maintaining a healthy diet, which includes a variety of food groups, is essential for good health. If needed, you may want to discuss your diet with a healthcare professional such as a dietician or your GP. Using pre-prepared frozen meals or asking friends or family to cook a meal for you can be helpful to save energy. When you do meal preparation, it may be useful to sit down to conserve energy.

Smoking and vaping causes harm to your immune system and lungs. If you are recovering from a virus such as COVID-19, smoking and vaping will slow down your recovery and increase your risk of reinfection. There are other significant benefits of quitting smoking and vaping, such as increasing your life expectancy and reducing the risk of diabetes or heart and lung disease. Speak to your doctor about treatment options to help you quit smoking and vaping, such as nicotine replacement therapy (NRT), other oral medications and support such as coaching and counselling. See here for more information on quitting smoking.

Alcohol use weakens the immune system and may hinder your body’s ability to improve your long COVID symptoms. Drinking alcohol may also worsen long COVID symptoms so it’s important to try to reduce your consumption.

Many long COVID symptoms may affect your ability to work as usual. It’s important to work with your employer to best manage your workload and your symptoms to ensure that work is not causing you to become more unwell or delaying your recovery.

Some things to discuss with your employer may include:

• A phased return to work – meaning that you will have a gradual increase of hours and responsibilities over an agreed upon period of time.
• A flexible working arrangement – e.g., reducing your hours, or doing your hours flexibly across the week when you have more energy, or working from home, if possible, to conserve energy
• If you are unable to meet the requirements of your role, discuss options for changing roles within your organisation.
• Review your work responsibilities and possibly delegate some tasks to other members of your team.

It’s important to acknowledge that returning to work after being unwell may be distressing. If returning to work is causing you to worry, it may be beneficial to talk this through with your healthcare professional to get tailored advice specific to your situation.