Suffolk and North East Essex Long COVID Assessment Service
Care Co-ordination Centre
Tel: 0300 123 2425
Long COVID recovery booklet – information for patients
Post COVID-19 syndrome is also called ‘long COVID’. It describes the signs and symptoms that develop during or following an infection consistent with COVID-19, which continue for more than 12 weeks and are not explained by an alternative diagnosis.
The condition usually presents with clusters of symptoms, often overlapping, which may change over time and can affect any system within your body.
The severity of your illness after catching COVID-19 does not indicate whether you will go on to develop long COVID. In other words, you may have a mild dose of COVID-19 and then develop long COVID. Or, you may have been severely ill with COVID-19 and then suffer no longer term after-effects.
Commonly reported symptoms
There is a broad spectrum of symptoms that you may or may not experience with long COVID. The most common ones are listed below:
- chills and sweats
- a fast heart rate at rest or on exertion
- poor concentration and short term memory problems
- voice problems
- muscle weakness
- pain – back/joint/muscular and chest
- flare up/exacerbation of pre-existing health problems
- hair loss
- skin rashes
- gastro-intestinal issues
- loss of taste and smell
- numbness/ pins and needles
- hormonal imbalance
Please seek advice from your GP or by calling 111 if you feel your symptoms are worsening and might need further investigation.
The experience of having COVID-19 can be very frightening. It is understandable that the experience and then suffering from ongoing symptoms months after contracting the virus can have a huge emotional impact.
Common problems related to this include:
- feeling anxious when struggling to catch your breath and when your heart feels like its racing
- feeling low in mood
- poor sleep
- wondering if this will ever go away
- worries about getting back to work
- worries about family or friends becoming ill and suffering
- health experts not always being able to answer all your questions or give explanations.
If you were treated in hospital, you might also experience:
- unpleasant images from your stay, that might seem to come ‘out of the blue’
- feelings of panic with any hospital reminders.
What can help?
- Avoid watching too much news or social media if it’s making you feel anxious.
- Speak to family and friends.
- Try to do activities that you find enjoyable and relaxing.
- Don’t be too hard on yourself if there are things that you are finding harder to do and remind yourself that recovery takes time.
- Focus on what is in your control.
Relaxation is an important part of energy conservation. It can help you to control your anxiety, improve the quality of your life and reduce pain. Below is a technique you can use to manage anxiety and help you relax.
Take slow gentle breaths and ask yourself:
- what are five things I can see?
- what are four things I can feel?
- what are three things I can hear?
- what are two things I can smell?
- what is one thing I can taste?
Think of the answers slowly to yourself, one sense at a time and spend at least ten seconds focussing on each one.
There are a few different relaxation techniques you can try. Different people prefer different techniques. You can search on the internet to explore different strategies, including:
- progressive muscle relaxation
- guided imagery or visualisation
- Alexander technique
- tai Chi
Breathlessness is a common symptom in people with long COVID. Your lungs can become inflamed with your initial infection and the effort of breathing can increase.
You may be breathing more quickly and shallower than normal, however it is important to try to stay calm. As your lungs recover and time passes into the 12-week mark following infection, there can be other reasons why breathlessness continues. These can be due to being deconditioned and anxiety.
Anxiety can also increase your heart rate and make your breathing rate increase further. We encourage breathing control to help manage your breathlessness. Practise while resting to begin with, then use during activity.
How do I practise a ‘Good Breathing’ technique?
- Lie comfortably on your back with a pillow under your head and knees. Place one hand on your stomach, with the other hand relaxed by your side
- Gently close your mouth, lips together and keep your jaw loose
- Breathe in gently through your nose, feeling your tummy rise and expand ‘like a balloon’ as you breathe in. The breath should be unforced and silent
- Breathe out lightly through your nose, if possible, without pushing, keeping your stomach relaxed
- Make sure you relax and pause at the end of each breath out
- When you breathe in, your upper chest should be relaxed and not moving. From time to time place your hand on your upper chest to check this
- As you repeat this sequence be aware of any areas of tension in your body and concentrate on ‘letting go’, particularly jaw, neck, shoulders, and hands.
Help with Breathing – leaflets and videos
Long COVID is an emerging condition that is not yet well understood but can be severely disabling, impacting people regardless of hospitalisation or severity of acute COVID-19.
Thorough assessment of your symptoms will help to increase your level of daily activity in a safe manner while monitoring how your body responds to this.
If your oxygen levels decrease by more than 3% with activity, it is important to stop what you are doing and speak to your GP or healthcare professional
Asking people with long COVID about their symptoms and the impact of physical, cognitive, and social activities on symptoms 12 hours or longer after exertion, may help to identify people experiencing relapses in symptoms after activity.
It is also important to establish the reason or source of chest pain, breathlessness, high heart rate, or low oxygen levels, to prevent harm and appropriately guide physical activity including exercise.
Physiotherapists can play a key role in the rehabilitation of people living with long COVID. They can help to balance activities with rest and recovery, and also consider other factors important in managing your symptoms
Your plan for increasing your activity levels will be individual to you and will be determined by your response to treatment.
It is important to resume everyday activities conservatively, at a pace that is safe and manageable for energy levels within the limits of your current symptoms.
Exertion should not be pushed to the point of fatigue or making your symptoms worse, both during and in the days following exertion.
Healthcare professionals may monitor your oxygen levels with exercise as an indication of how your body is responding to activity.
Some patients with long COVID may experience autonomic dysfunction, presenting as breathlessness, palpitations, fatigue, chest pain, feeling faint (presyncope) or fainting (syncope).
This could contribute to difficulty with exercise and may need more specific tailoring of a treatment plan to reach a sustainable level of activity.
Physical activity of all forms might benefit some people living with long COVID but could make symptoms worse in others.
Using a cautious approach to physical activity will support longer-term recovery. Physical activity, including exercise in long COVID should only be approached with caution and vigilance, ensuring rehabilitation programmes are restorative and do not make an individual’s symptoms worse both during and in the days following.
Pacing and recovery
The 3 Ps = Pace, Prioritise, and Plan
When recovering from any serious illness most people will experience ups and downs with their symptoms for a variety of reasons.
People tend to use these symptoms to decide how much they do. So on ‘good days’ they may try to do more, often trying to ‘catch up’ and very often overdoing it.
This can result in experiencing a bad day and some people describe this as a ‘relapse’ when they might experience more symptoms and feel low and then are able to do very little.
It is important to remember that all activity takes energy, whether it is physical, mental or emotional. You might have noticed that when you ‘overdo’ things, your symptoms are worse, and you need to rest more.
Resting decreases the symptom and you are tempted to be active again. This is called the ‘boom and bust pattern’ and is detrimental to your recovery.
Pacing yourself will help you have enough energy to complete an activity. You will recover faster if you work on a task until you are tired rather than exhausted.
The alternative, doing something until you are exhausted, or going for the big push, means that you will need longer to recover.
The pacing approach – Climb five steps, rest for 30 seconds and repeat. You will not need a long rest at the top and will not feel so tired the next day.
The big push approach – Climb all the stairs at once. You will have to rest for 10 minutes at the top and feel achy and tired the next day.
- Break activities up into smaller tasks and spread them throughout the day.
- Build rests into your activities; it is key to recharging your energy.
- Plan 30 to 40 minutes of rest breaks between activities.
- Sit and rest wherever possible.
Look at the activities you normally do on a daily and weekly basis and develop a plan for how you can spread these activities out.
If certain activities make you breathless or fatigued, rather than do them in one go, plan to do them throughout the day. Change the time of an activity: instead of having a bath or shower in the morning when you are busy, have one in the evening.
Do weekly activities such as gardening, laundry, and food shopping on different days, with rest days in between.
- Collect all the items you need before you start a task.
- Specially adapted equipment is likely to make tasks easier. Occupational therapists may be able to help with this – ask the SNELCAS team for further information
- You may get more done when family or friends are visiting and can help you.
- Some daily activities are necessary, but others are not. Ask yourself the following questions to find out which of yours are necessary:
- What do I need to do today? What do I want to do today?
- What can be put off until another day?
- What can I ask someone else to do for me?
Top energy conserving tips:
- Do not hold your breath during any task.
- Try to avoid pulling, lifting, bending, reaching, and twisting where possible.
- Push or slide items as much as possible, rather than lifting them.
- Bend with your knees rather than from your waist.
Good nutrition and hydration help to support your body in fighting Coronavirus (COVID-19) as well as helping to rebuild your muscle strength and function as part of your rehabilitation.
Even though you may not feel hungry or thirsty, it is important to eat and drink well.
Below is some general information to help you to maximise your food and fluid intake.
If you have specific dietary requirements, please check with a healthcare professional that the information is safe for you to follow.
- Being well-hydrated helps your body to function, and aids mobilisation and recovery
- Drink regularly throughout the day – aim to have eight cups of fluid each day
- Take small, frequent sips of liquids every few minutes if you are not able to drink large amounts at one time
- Aim to drink enough fluid to keep your urine a pale straw colour
- If you have a raised temperature, your fluid needs may be higher
- All fluids (except alcohol) count, try to include nourishing fluids such as milky drinks or juices.
Eat a varied and nourishing diet
You may require more nutrition than usual to support your body during and after illness. Dieting with the aim of reducing body weight is not recommended during acute illness or recovery, due to the risk of reducing your muscle mass, strength and ability to carry out day-to-day tasks.
Long COVID can affect people’s appetite and weight in different ways. Some people find they gain unwanted weight and others suffer with a reduced appetite and consequently lose weight. A well-balanced diet contains foods from all the food groups.
The Eatwell Guide shows how much of what we eat overall should come from each food group to achieve a healthy, balanced diet. You do not need to achieve this balance with every meal but try to get the balance right over a day or even a week. For more information visit NHS Eat Well.
Cognition means someone’s ‘thinking skills’. People can experience a range of difficulties with their thinking skills post-COVID-19. These difficulties include memory, attention, information processing, planning and organisation.
A common symptom experienced is ‘brain fog’. Brain Fog is a term used to explain several symptoms that affect someone’s ability to think.
This involves feeling confused, disorganised, having memory problems, finding it hard to focus and having slower processing of information.
Brain Fog is often made worse by fatigue, meaning the more tired a person is, the more they notice increased difficulty with their thinking skills.
To support your thinking skills, consider the following:
- Minimise distractions: Try to work in a quiet environment with no background distractions. You may find it helpful to:
- Wear ear plugs
- Let people know that they should try not to interrupt you
- If you are distracted when reading text, block off parts of the text using paper, or use your finger as a marker.
- Complete activities when less fatigued: When completing a task that demands your thinking skills, plan this for a time when you are less tired. For example, if you tire as the day goes on – then do the task in the morning.
- Say things out loud: By saying things out loud like ‘what should I be doing now?’ or ‘Stay focused’ or by reading instructions out loud you can help yourself to stay on the right track.
- Take frequent breaks: If the problem is made worse by fatigue, work for shorter periods of time and take breaks. Use “little and often” as a guide and pace yourself
- Set yourself targets or goals: Having something definite to work towards will help you stay motivated. Set deadlines like “I’ll do that task at 10 o’clock”, instead of “I’ll do my work later on”.
- Best time and apply structure: Work out when your best time of day is for doing this kind of work. Try to set up your daily/weekly schedule to take account of this. It may help to plan activities ahead of time. Establishing a daily and weekly routine can also help. Keeping a record, or breaking things down into manageable parts can help, so then if you get distracted you can pick up where you left off.
- Use incentives: When you achieve a target or goal, reward yourself; try something very simple such as a cup of tea or coffee, letting yourself watch a TV programme or going for a walk.
- One thing at a time: Concentrate on one thing at a time; do not try to take in too much information at once, as this can lead to mistakes. Do one task then move on to the next.
- Don’t rush things: You may find that you tend to rush everyday tasks and end up making mistakes. Take your time and pace yourself.
- Self-monitor or check and double check your work: Do this with everything you do. It will be slow and hard at first, but it will become a habit as you get accustomed to it. This is the only sure-fire way of picking up on your own errors.
- Gain control: If in everyday conversation you feel you are being ‘overloaded’ and you cannot attend to all the information, ask the person who is talking to you to slow down and/or repeat themselves. Be assertive and say something like ‘Excuse me, I think you have lost me, could you repeat that please?’
- Aids: Using lists, post it notes, diaries and calendars can all help support your memory and routine.
- Repeating things: Immediately repeating something can help.
- Contact Suffolk and North East Essex Long Covid Assessment Service (SNELCAS) at the Care Co-ordination Centre. Tel: 0300 123 2425 or send message via email
- Suffolk Wellbeing Service Support for mental health, low mood, COVID-19 anxiety, loneliness and onward referral for access or return to work. Self-referral available for 1:1 support or online guided support
- Wellbeing service: Self-refer via 0300 123 1503 or on the Suffolk Wellbeing Service website.
- Suffolk Mind: 0300 111 6000 or please see the Suffolk Mind website.
- Please familiarise yourself with managing some of the known Long COVID symptoms
The following links provide additional information that may help:
- Managing post-viral fatigue after COVID-19
- Conserving energy
- Helping with breathing British Lung Foundation advice on keeping active
- British Lung Foundation videos of exercise for people with lung conditions
- Eating well – advice for patients and carers via Malnutrition Pathway
Managing joint pains, muscle aches and pain, fatigue and deconditioning
- Allied Health Professionals Suffolk COVID-19 Exercise Rehabilitation Classes.
- National Diabetes Prevention Programme – Patients can self-refer with NHS number, latest HbA1c or FPG reading (including the date) and their GP surgery name.
- AbScent – Loss of taste and smell – AbScent aims to help people understand more about your COVID-19-related smell loss.
With grateful thanks to the Leeds long COVID Service for their permission to use and adapt their leaflet for Suffolk and North East Essex patients.
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