Long Covid

This section provides information about:

  • What Long Covid is and how it affects your body
  • The features and most common symptoms of Long Covid
  • Treatments and management of Long Covid

How CHSS can help you

  • You can talk, in confidence, to one of our Advice Line Nurses
  • You can order or download Health Information resources: including booklets and factsheets
  • We can support you in your community through our Long Covid patient group

These pages are under regular review and will be updated when possible to reflect new information and the needs of the people reading them. If you feel anything in this section is missing or incorrect, please contact jay.wilkinson@chss.org.uk to provide feedback. Last updated 22nd June 2021.

What is Long Covid?

COVID-19 is a severe and multi-organ disease, and may have lasting consequences on your body even after the virus is cleared from your system. It can also take longer to clear the virus from your system than expected, particularly if you are immunocompromised or have existing health problems. Long Covid is a blanket term which includes both ongoing COVID symptoms and new symptoms which may develop as a result of COVID-19 infection. For the purposes of the information on this website, we will focus on symptoms which affect people more than 12 weeks after COVID-19 diagnosis. This is referred to as “post-COVID syndrome” in medical and government guidance.

Long Covid can affect people of any age and background, including children, regardless of the severity of their original COVID symptoms – some people experience Long Covid symptoms without ever having been aware that they were ill to begin with!

Some groups of people do seem to be at higher risk of developing long-term symptoms, including:

  • Women and people assigned female at birth
  • People over the age of 60
  • People of Afro-Caribbean background
  • People with asthma, diabetes, or other long-term health problems

There is no evidence that you can get Long Covid from any of the available vaccinations, if you have not actually had the disease.

Long Covid is an emerging condition, so there is a lot we don’t know yet about how it works and affects people in the long run. However, as the situation goes on, and the people who have Long Covid symptoms share their experiences and stories, we are developing a better understanding of what Long Covid means and how we can manage it.

You can find frequently-updated information at the NHS Inform page on COVID-19. The National Institute for Health Research (NIHR) also has a regularly-updated review of the research on Long Covid in the UK.

Getting a diagnosis

Guidance for Long Covid was added to the SIGN (Scottish Intercollegiate Guideline Network) guidelines for doctors in December, 2020, and is a recognised diagnosis in Scottish medicine. However, not all doctors are familiar with the condition.

If you have the symptoms of Long Covid, your healthcare professional should take a medical history to see whether you may have had COVID-19. For a diagnosis of Long Covid, any signs or positive tests indicating COVID-19 should be more than four weeks old.

You may also be asked to undertake some tests to rule out other things that might cause the same symptoms. These tests might include:

  • Blood tests
  • Checking your blood pressure, heart rate, and heart function
  • ECG (electrocardiogram) tests to pick up underlying heart conditions
  • X-rays or other forms of imaging to pick up problems with your organs

If you still have symptoms after 12 weeks and there is no other clear explanation for the symptoms, then a “post-COVID syndrome” or Long Covid diagnosis will be given.

You may also be given information about Long Covid when you are discharged following COVID-19.

If you know that you had COVID-19 at some point, even if you weren’t hospitalised, and you are struggling with the symptoms of Long Covid, ask your healthcare professional whether they think it may be Long Covid.

 

Symptoms of Long Covid

There are a wide range of symptoms associated with Long Covid. You may not have all of these symptoms, but if you have more than two or three, it may be worth speaking to a doctor.

We don’t yet know how these symptoms will develop going forwards, and there seems to be a lot of variation between people, but there is evidence that most people show slow, but continuous, improvement and may recover over time.

  • Cardiovascular symptoms – heart palpitations, chest tightness, chest pain, risk of embolism (i.e. loose masses in the bloodstream)
  • Respiratory symptoms – cough, breathlessness
  • Neurological symptoms – Postural Tachycardia Syndrome (PoTS), fatigue, headaches, sleep problems, dizziness, peripheral neuralgia (symptoms such as pain, pins and needles, or numbness)

PoTS is a common symptom of Long Covid, and refers to a condition where standing up makes your heart race. This causes all kinds of other symptoms, like dizziness, blurred vision, muscle weakness, and tremors. PoTS can often be misdiagnosed as anxiety, but if you only experience these symptoms when standing up, you may want to speak to your healthcare professional about revisiting the diagnosis. If you have PoTS, you can find more information and support at PoTS UK, a charity for supporting people with PoTS.

Fatigue is another very common symptom of Long Covid, experienced by over half of Long Covid sufferers. Fatigue is often misunderstood as just “being tired”, and while this is part of the condition, there is a lot more to it than that. Fatigue may also include: “brain fog”, where you struggle to think or form memories; muscle weakness; difficulty exercising; immune weakness; and dizziness, among other possible symptoms.

Breathlessness and chest tightness are also extremely common, and may be either a result of COVID-19 symptoms continuing over time, or of damage caused by the virus.

Long Covid may also be associated with a long-term increased risk of developing other health problems, like diabetes, heart problems, or liver problems. It is hard to know how this may affect people in the future, since Long Covid is a newly-defined disease. However, there is evidence that up to 70% of COVID-19 patients have some level of organ damage, especially to the heart and liver.

Many people with Long Covid also experience mental health problems like depression, anxiety, and symptoms of Post-Traumatic Stress Disorder (PTSD). If you are worried about your mental health, speak to your healthcare professional.

Long Covid symptoms often follow a “remission and relapse” pattern, which means that they can get much better or even go away entirely (remission), but then come back later (relapse). Relapses often happen when people overwork themselves because they feel well and try to do too much. This means it is very important to manage your activity even when you feel well.

It is very important that you speak to a health specialist – your GP or nurse practitioner – about any new symptoms, as they can be a sign of other underlying problems. You should also speak to a health professional before starting any new course of treatment, not just medication.

Managing your symptoms

There is no single, standard treatment for Long Covid. Your healthcare professionals may provide you with treatment for individual symptoms – such as heart arrhythmia or palpitations (where your heartbeat is disordered), breathlessness, or fever.

There are also things you can do to manage your own symptoms and support your own recovery. What works will of course vary from person to person, particularly because there is such a wide range in how people’s symptoms present. However, there are some key principles which will be helpful for most people:

Pace yourself
One of the most important things in managing your symptoms is to listen to your body and not overdo it. Rather than pushing through pain and fatigue to try and do as much as possible, you should be careful to rest and give yourself a chance to recover. This also means that you should try to spread out work and activities where possible, doing a little bit at a time.

Ask for help
You don’t have to face your symptoms alone. Building a support network – friends, family, medical professionals, and other people who are experiencing the same condition – is proven to have a positive impact on recovery in most conditions.

Track your symptoms
Keeping a diary of your symptoms can be a great tool. By looking back at information about when your symptoms are worst and when they are better, you can start to see patterns and highlight things that may trigger symptoms flare-ups. This lets you take steps to avoid these triggers in the future. Tracking your symptoms is also valuable when you come to talk to healthcare professionals, as it reminds you of symptoms you may have forgotten and helps to remind you how your symptoms appear in the moment.

Prepare for symptoms flare-ups
Whatever your symptoms are, you can take steps to prepare for days when they are worse than usual. This might mean:

  • Keeping a small stock of any over-the-counter medications you may need to manage your symptoms. Discuss with your pharmacist what would be good to have
  • Having a bottle or glass of water close to your bed
  • Keeping a stock of healthy snacks and easy-to-prepare meals
  • Asking friends and neighbours to check in on you if you’re concerned about being alone

Finding support

There is a wide range of support available, both through Chest Heart and Stroke Scotland and elsewhere.

Advice Line

Our Advice Line nurses provide confidential advice, support and information to help you or your family. Whether you need someone to talk to or you are looking for details of local services, the Advice Line will help with any information on living with Long Covid.

To contact the Advice Line nurses:

Call 0808 801 0899 (FREE from landlines and mobiles)

Email adviceline@chss.org.uk

Text NURSE to 66777

 

Support groups

Many people find it useful to meet others who have been affected by Long Covid.

The Chest Heart & Stroke Scotland Long Covid support group is here to help you manage your condition, find support and talk to others who are also living with Long Covid. The group also enables participants to help shape how we provide help and support for people living with Long Covid.

The group meets regularly via Zoom and also has a Facebook group. For more information, contact the Advice Line on 0808 801 0899 or email LongCovid@chss.org.uk.

 

Outside services

Your Covid Recovery, a website designed to support people recovering from COVID-19, is developing more resources on Long Covid going forwards, and is an excellent resource for general support on recovering from COVID-19. However, it does recommend exercise therapy, which is not supported by the evidence.

 

Getting back to work

The Society of Occupational Medicine has produced several documents dealing with coronavirus and Long Covid. You can also find support through Healthy Working Lives Scotland.

Finding information

The information available on Long Covid is constantly developing. Although Chest Heart and Stroke Scotland will continue to do its best to stay up-to-date, our information may not be the most recently available.

You can get overall information about Long Covid, regularly updated, from:

NHS Inform – The central information hub from NHS Scotland. On this website, you can also find information on COVID-19 more generally. This website updates regularly..

National Institute for Health Research – The NIHR publishes a “living review” of the research on Long Covid, and publishes the highlights of the research in an easy-to-read and comprehensive way. This website updates regularly.

The Post-COVID Hub – Asthma UK and the British Lung Foundation operate these pages on Long Covid, with a focus on respiratory problems and managing them. This website updates regularly.

BMJ Best Practice on Covid-19 – This page summarises the current understanding of COVID-19 complications, including Long Covid symptoms and post-ICU syndrome. This website updates regularly.

SIGN patient booklet – This booklet, published in December 2020, summarises the Scottish clinical guidelines on Long Covid in a readable, patient-friendly format.

Brighid’s Story

Long Covid sufferer Brighid Ó Dochartaigh, a 47-year-old geologist from Edinburgh, knows first-hand the devastating impact the condition can have on people’s lives.

“I still struggle to walk more than three blocks from home.”

“Before Covid, I was healthy and fit – my work often calls for strenuous field work & travel to remote places round the world.

“Now, after nearly a year of long covid, I still struggle to walk more than three blocks from home. My GPs are very supportive but don’t have any medical treatment to offer, and don’t know how long my symptoms might last. All I can do is try to manage this life changing illness at home. I just want my old life back – to be healthy, able to work, run, visit my friends and family, but I’m scared that won’t happen. My employer has been really supportive, but that can’t last forever – I don’t know what I’ll do if I don’t get well enough to be able to work again.”

Joanne Graham, Head of Service Delivery here at Chest Heart & Stroke Scotland is hearing regularly how people in Scotland are being affected by Long Covid.

We are hearing more and more from people in Scotland who are struggling with the effects of Long Covid. There are many symptoms that people are struggling with from severe fatigue through to memory issues which can all make completing the smallest of tasks a struggle.

Individuals experiencing the signs and symptoms of Long Covid can need support for months after the initial Covid infection and it can be devastating in terms of the effect it can have on their lives. Emotional support is also key and we would encourage people to stay connected, find support and don’t rush at recovery. It is essential to take time and be kind to yourself.