Information for Patients

What is Post-COVID Syndrome?

Many people who contract COVID often feel better in a few days or weeks and most will make a full recovery within 4 weeks. But for some people, symptoms can last longer, and recovery can feel much harder.  This can be described as Post-COVID Syndrome (also known as Long COVID).

Post-COVID syndrome can be described as:

  • experiencing symptoms consistent with a COVID-19 infection for more than 4 consecutive weeks;
  • symptoms that cannot be better explained by an alternative diagnosis (for example, an existing condition);
  • the condition usually presents with multiple symptoms, often at the same time, which may change over time;
  • any part of your body (such as physical, mental or emotional) can be affected.

Remember, everybody recovers differently, and some may take longer, or go through a more intense recovery, than others.

The chances of having long-term symptoms does not seem to be linked to how ill you are when you first get coronavirus.

People who had mild symptoms at first can still have long-term problems.

What are the symptoms?

Common Post-COVID symptoms include:

  • extreme tiredness (fatigue)
  • shortness of breath
  • chest pain or tightness
  • problems with memory and concentration ("brain fog")
  • difficulty sleeping (insomnia)
  • heart palpitations
  • dizziness
  • pins and needles
  • joint pain
  • depression and anxiety
  • tinnitus, earaches
  • feeling sick, diarrhoea, stomach aches, loss of appetite
  • a high temperature, cough, headaches, sore throat, changes to sense of smell or taste
  • rashes

It is important to remember we are still learning about COVID and its possible long-term effects.  It is possible there are other symptoms that may be associated with it but have not yet been identified.

What is the Lincolnshire Post-COVID Rehabilitation Service?

The Lincolnshire Post-Covid Rehab Service is a rehabilitation service for people in Lincolnshire who are experiencing ongoing symptoms of COVID-19.

The service was established on the 21 of December 2020 and works alongside system partners by bringing together existing rehabilitation services from across the Lincolnshire Health and Care System.

Multiple services meet virtually to discuss which services might be best placed to help patients with their recovery, personalised care plans are created, and patients receive regular follow up from the team. Referrals are to be made via your GP.

The team can be contacted on 01522 449799 during office hours or by email: lhnt.lincspostcovidrehab@nhs.net.

You can follow the team on their Twitter account - @LincsCovidRehab or see our YouTube channel to find useful videos.

Who is it for?

The service is for people experiencing symptoms associated with COVID-19 for weeks or more from the initial onset of infection, who are able to engage and benefit from supported self-management to aid their recovery.  

To access the service, you must:

  • be presenting with symptoms associated with COVID-19 for 4 weeks or longer 
  • have had other possible medical diagnoses and pre-existing medical conditions investigated (via your GP practice) and be excluded as the cause for current symptoms;
  • be medically fit and stable for rehabilitation;
  • be able to participate in an exercise programme.

Your GP practice can work with you to determine if the Lincs Post-COVID Rehab Service is what you need to support your recovery. 

What to expect

There are different elements of the service that are tailored to suit an individual approach in your recovery.  It may be that the supported self-management platform, Your COVID Recovery, is the one most appropriate for you, or perhaps being treated by one of our specialist services is what is needed.  It may be that you need a mix of these to feel better again. 

The service also consists of a multi-disciplinary team (a team made up of medical and health professionals from all kinds of specialisms) who work together to determine the best outcome if you have complex health needs that need input from multiple services.

It will take time for the long-term side-effects to reduce as your body heals and recovers from COVID-19. Below is a booklet that will help you to manage fatigue, it provides useful breathing exercises and simple exercise activities that you can do to continue your recovery at home. It also gives handy information on how to manage any anxiety you may be experiencing as a result of having COVID-19 and how to access help should you feel you need it.

Click here to download and read the Post-COVID Fatigue Management Booklet.

If you have concerns about your progression at home and feel you are not improving as you should be, please contact your GP for a follow up to be arranged. If your symptoms cannot be better explained or better treated by any other explanation, your GP may refer you to the Lincs Post-COVID Rehab Service.

For more information on recovering form COVID-19, please go to the Your COVID Recovery NHS website

Respiratory illnesses, such as COVID-19, can cause breathlessness both during and whilst recovering. How you think and feel about breathing is important, it can affect our daily activities as well as our health and wellbeing. There are multiple approaches that can be used to tackle breathlessness, the main one being breathing techniques. The leaflets on the ACPRC website offer five different exercises used to control and settle your breathing.

Other useful links:

Helplines: Asthma expert nurse helpline - 0300 222 5800

To stop any food or fluid entering the lungs, our natural instinct is to hold our breath, however, Covid can make this difficult. If you find that COVID has affected your breathing, you may need to take action to help manage your coordination of breathing and swallowing. ‘Your Covid Recovery’ offers useful advice to ensure your breathlessness does not affect your eating or drinking whilst you are unwell. Please visit the Your Covid Recovery website for further information.

Whilst recovering from Covid you may still experience a dry cough for some time which, if left unmanaged, can cause irritation and inflammation. It can be very difficult to control your cough, but for your airways to stay clear it is important that you keep practising. Please view the Your Covid Recovery website for a helpful guide on breathing exercises.

Please visit our YouTube channel for some helpful videos.

If you are struggling to eat enough, or if you are losing weight or strength in your muscles, you may need to think differently about the foods you are eating. This leaflet provides important tips to help you get the most out of the foods you eat while you are unwell and may help you to regain some of the weight or strength you have lost. The malnutrition pathway website has produced a useful guide to follow, please click here to view.

Other useful links:

  1. Malnutrition website - Eating Well
  2. Malnutrition website - Nutrition Support
  3. Your Covid recovery website – taste and smell
  4. Your Covid Recovery website – eating well
  5. Abscent website - Loss of smell and taste support
  6. Snif App - Smell and taste training
  7. Fifth sense website - Taste and smell information
  8. Fifth sense website - Smell and taste training
  9. University of Plymouth website - Nutritional support

Fear, worry, and stress are natural reactions to potential or actual threats especially during times when we are faced with uncertainty and the unknown. As a result, people's anxiety in the face of the COVID-19 pandemic is normal and understandable. Many of us are struggling with how the virus is affecting ourselves and our loved ones, but please remember that you are not alone. The Mental Health Foundation website offers multiple resources to help us stay informed on what we can do to support and manage our wellbeing during such difficult times.

Other useful links:

  1. Your Covid recovery website – managing fear and anxiety
  2. MIND website - COVID and your mental health page
  3. British Lung Foundation website – How can I manage my anxiety?
  4. Mental health website - Change, loss and bereavement
  5. Steps2Change Lincolnshire website

Helplines:

  1. Mind - 0300 123 3393
  2. The Samaritans - 116 123 (free) or email jo@samaritans.org.uk 24 hours
  3. Shout Crisis Text Line - text ‘Shout’ to 85258
  4. Re-think Mental Illness - Mon-Fri 10am – 2pm, 0300 5000 927

Have you been feeling tired and exhausted despite getting plenty of sleep and rest? It is normal to feel tired from time to time but if this has been happening for an extended period, it is more than likely that you are suffering from post-viral fatigue. The Royal College of Occupational Therapists offer useful advice and activities on how to increase energy levels and gradually stabilise your body. Please see information on the Royal College of Occupational Therapists website on how to manage post-viral fatigue after Covid-19.

Other useful links:

  1. Royal College of Occupational Therapy website – How to conserve your energy
  2. Your Covid Recovery website – fatigue
  3. Your Covid Recovery website – sleeping well
  4. Sleepio website - Struggling to sleep?

It is common to experience physical problems whilst recovering from Covid-19, this could include muscle weakness and joint stiffness, fatigue, as well as reduced mobility. If you feel that you are struggling to remain as active as you once were, please see CPS’ leaflet on their website which provides six easy to follow exercises to help rebuild your muscle strength.

Other useful links:

  1. Your Covid recovery website – returning to work
  2. OneYou Lincolnshire website
  3. NHS weight loss plan (12 week exercise and weight loss plan)
  4. NHS weight loss plan app

Many people who have recovered from COVID-19 have reported feeling not like themselves: experiencing short-term memory loss, confusion, or an inability to concentrate. Problems with attention and concentration can make it hard to focus and ignore distractions day-today, therefore it is important that we manage these difficulties. Please see useful advice on Pacing, Planning and Prioritising your daily activities, on the Your Covid Recovery website.

Urinary incontinence is a common problem affecting around 1 in 3 women and 1 in 5 men, therefore it is not something that anyone should ‘just live with’. Continence is a sensitive subject that can make people feel embarrassed, but it is a treatable medical condition and there is always help available. LCHS provide a service delivered by specialist continence nurses, who deliver bladder and bowel clinics in community settings. Do not suffer in silence. More information on the LCHS continence service can be found on our website.

Other useful links:

  1. National Association for Continence website - resources