Post Covid Syndrome (Long Covid)

This page has been created to support people who have been dwoman headache.jpgiagnosed with Post Covid Syndrome (also known as Long Covid). If you are experiencing, or have been diagnosed with Post Covid symptoms, then this site is here to help you manage your condition.

 

The page features information on symptoms, support available, answers to questions you may have, as well as advice and shared experiences from other people.

 

If you’re a patient in North West London and you think you may have symptoms of Post Covid Syndrome, please make an appointment to see a clinician at your GP practice in the first instance. For urgent problems, please call NHS 111.

What is Post Covid / Long Covid syndrome?

What is Post Covid?

For some people, coronavirus (COVID-19) can cause symptoms that last weeks or months after the infection has gone. This is sometimes called post-COVID-19 syndrome or long covid.

The length of time it takes to recover from COVID-19 is different for everybody.

Many people feel better in a few days or weeks and most will make a full recovery within 12 weeks. But for some people, symptoms can last longer.

The chances of having long-term symptoms does not seem to be linked to how ill you are when you first get COVID-19.

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

What are the symptoms of Post Covid?

Some of the common lasting symptoms of coronavirus can include:

  • fatigue
  • breathlessness or shortness of breath
  • difficulty sleeping
  • anxiety and depression
  • heart palpitations
  • chest tightness or pain
  • joint or muscle pain
  • not being able to think straight or focus (‘brain fog’) 
  • change to your sense of smell or taste
  • persistent cough

Frequently Asked Questions

How common is Post-Covid Syndrome?

Around 10% of patients who have tested positive for Covid-19 remain unwell beyond three weeks, and a smaller proportion for months.

 

How long does it last?

The available evidence tells us recovery is different for everyone. Symptoms may persist for weeks or months. That’s why it’s very important to find the right treatment and support. 

There is a lot you can do to help yourself, depending on your symptoms. Click here to find out more. 

 

Why are some people affected and not others?

We don't yet know why some people develop post-Covid syndrome and others do not. Clinicians and researchers are working hard to answer this question.

 

What treatment is available?

Depending on your symptoms, there are different treatments which can support your recovery including:

  • Respiratory (breathing) clinics
  • Physical therapy
  • Speech and language therapy
  • Mental health support
  • Wellbeing support

 

When should I seek urgent medical help?

If you are unsure whether to get medical help with your symptoms then refer to the guidance in Your Covid Recovery When Do I Need To Seek Help? | Your COVID Recovery

 

Can I pass Post-Covid syndrome on to anyone else?

Post Covid syndrome is not contagious. Symptoms are caused by your body's response to the virus continuing beyond the initial illness.

 

Can children get post-covid?

Yes, some children can get post-covid after having covid. This site offers information for parents and children who have long-covid.

Long Covid Kids | What is Long Covid Kids? | Long Lasting Covid Symptoms

 

I’m too ill to work, what can I do?

Citizen’s Advice offers support and guidance about what to do when your life is interrupted with covid and it affects your work.

Coronavirus - if you're worried about working - Citizens Advice

Returning To Work | Your COVID Recovery

 

Where can I find local post-covid assessment clinics in North West London?

There are post-covid assessment clinics running from :

St Marys Hospital

Charing Cross Hospital

Chelsea & Westminster Hospital

West Middleex Hospital

Central Middlesex Hospital

Support for managing your Post Covid symptoms

Local Support services for Post-Covid in North West London

Your Covid Recovery is an excellent website for managing your condition and learning how to cope with post covid symptoms. It contains the latest information, places where you can find support, and guidance for your friends and family on how they can help you recover.

Click on the Your Covid Recovery logo to take you to the site.

For more support with managing your symptoms click on the area you need help with 

 

Mental Health

Mental Health support from NHS NW London

Guidance for coping with mental health following Covid

Mind Charity - Coronavirus and Your Mental Health

 

Breathing Support

Advice on coping with breathing problems Breathlessness | Your COVID Recovery

Advice from the British Lung Foundation - Support for you | British Lung Foundation (blf.org.uk)

 

Sleep and Tiredness

Specific advice for improving memory and concentration when you have post-covid syndrome - Memory and Concentration | Your COVID Recovery

Recovering from COVID-19: Post viral-fatigue and conserving energy  - guidance from the Royal College of Occupational Therapists

Sleep problems - Every Mind Matters

For help with tiredness visit the Your Covid Recovery page Getting Moving Again | Your COVID Recovery

 

Relationships

Relationship counselling and advice | Relate London North West

 

Work

Advice on getting back to work after Covid - Returning to work after covid

 

Healthy Eating

Recovery and diets post covid - Post Covid dietary advice from Plymouth University

Eat Well - https://www.nhs.uk/live-well/eat-well/

 

Exercise

Tips for building strength to help combat tiredness - Getting Moving Again | Your COVID Recovery

 

Case Studies

The following people have openly shared their experiences of post covid syndrome, which provide some useful information and tips. The hope is that these stories will reassure other peopel experiencing post covid syndrome and help them find ways of coping with it to aid recovery. 

Kirsten Funes
Anonymous - Mother of 4 boys living with POst-covid syndrome 
Yannis Psomadakis

 

Kirsten Funes

Last year my son had cough just as we went into lockdown. His cough was absolutely terrible, and an Ambulance was called for him. A week later, I called the ambulance as I too was feeling terrible. It was 10 times worse than flu. I suffer from Asthma and in the past have had severe anxiety and moderate post-natal depression after having children. So my symptoms were initially dismissed as a panic attack by the paramedics, who didn’t want to take me to the hospital, and so I didn’t go. After a week the symptoms disappeared, but then they came back again, so I went into hospital.

 

When I came out of hospital, I started experiencing a pattern where the symptoms came in waves. Every week I would be poorly for 3 days then would get better for 4, but then carried on each week. It was very disruptive for my normal life. I was trying to carry on as normal, cleaning and cooking for my family, but this cycle eventually led to exhaustion. Going to the park with my children in the morning would mean I was completely wiped out in the afternoon and not able to do anything. So I started to avoid going to the park.

My routine would be, get up in the morning make breakfast and then go to bed. Get up to make my family lunch, then go back to bed, get up in the evening, make dinner and then go back to bed. This cycle lasted for weeks.

 

The symptoms I experience are a mild fever, a cough, which makes it feel 10 times worse. Im often not able to breathe properly, I get swelling on hands and pain on the shoulder.

I get very tired and find myself needing to sleeping 3 or 4 times a day, I stopped going to the park with my son because I felt too exhausted to do anything else.

At work, brain fog made me forget how to do simple excel tasks. Even though Spanish and French are my main languages, I need to read a paragraph 3 or 4 times for it to make sense. Short term memory has been really affected. I was suffering from severe forgetfulness.

 

My family and friends know I have been suffering with post covid syndrome, but because I initially didn’t get tested, I feel that some have doubted that is what I have. In general though, once I have explained, they are very supportive.

 

After I took the first vaccine, I noticed a huge improvement in my levels of tiredness. From exhausted, I became very tired. I was able to do normal things again.

 

To help my recovery, Ive started sticking to a regular routine. I found that doing some online Yoga and meditation class with a teacher on line twice a week has made a massive difference. These classes put me in a much better mood and physically I feel better.

 

I also decided to lose weight and to get in better shape to help me with my recovery. Starting going to a studio and doing 30min walks on a treadmill, in a controlled environment. Doing some easy physical activity really helped me. One of the Drs whose website I follow recommends not to do any excessive exercise and to monitor my heart rate. I even bought a smart watch to keep track of my heart rate. It also logs how many hours I’m sleeping and my sleep patterns, which helps me see how Ive progressed.

 

I also decided to quit reading social media, which can be very negative. I try to make sure I don’t read anything about post-covid unless it’s from an expert.

 

 

Mother of 4 Boys living with Post -Covid syndrome

I first had Covid in December 2020 and was off work for 6 weeks. When I went back to work, I found that I still had some lingering symptoms, which I left for a couple of weeks before eventually going to see a GP. I had some strange symptoms, pins and needles in my nose, a strong smell of burning of oil, tinnitus, brain fog and really deep tissue pain in my thighs, which I’d never had before.

My GP then referred me to a clinic at the hospital. 

Following 9 Months of treatment  my symptoms are lessening, but now in month 9, I don’t know how much they are lessening or whether they are staying the same. My pins and needles have now gone, my smell is virtually back to normal but however I think my tinnitus is permanent, although Im learning to live with it. My leg pain and deep tissue pain depends on the amount of exertion.

However the brain fog I experience is horrible, one of the worst symptoms to have. When Im having a good day Im ok, but on a bad day I get names wrong and words jumbled up, which affects my work. I get embarrassed and think that people are looking at me, which causes more anxiety, then they are looking at me whilst Im waiting to find the right word, and then I feel more anxious because Im not able to say the right word. Its like a vicious circle.

To help me with this I need to get really organised.  I constantly have to have post it notes, notes on my laptop and appointments in my calendar. But I also need reminders about what the appointment is about, or else I won’t remember. I now religiously write lists, without them I wouldn’t be able to remember anything. I feel a great sense of achievement in ticking things off.

Sometimes if I have a good day, I’ll wake up and think ‘Today’s a good day, I’ll try and do everything today, because I don’t know what tomorrow will be like’. But that can mean I do too much. When I try to go to sleep I sometimes feel absolutely drained, and I can’t sleep because I feel weak. I’ll be body tired rather than mentally tired. So I’ve learnt to pace myself and not try to do too much.

I live in a family of 5 boys, so it is very boisterous and there is always something going on. I’m always doing something which is good, but it also means that it is very difficult to slow down, but I’ve learnt to pace myself. My family have really helped me get through it because they’re all mickey-takers, so they’ve just continued with that and I find the humour really helps.

Everyone’s got a different starting point, especially mentally. Covid doesn’t care what you’ve got. If you are someone who does suffer from anxiety or depression then I can imagine this will affect you in different ways.

 

Yannis Psomadekis

I first got Covid in Feb 2020. I had the virus for around a week itself, but the longer term symptoms stayed with me for about two and a half months. I started to go to the GP about my cough and then when the spread of Coronavirus was growing, it started to become very difficult to get an appointment. But as the cough wasn’t getting worse, I didn’t go and see the GP for a while, as they suggested.

 

I began taking anti-inflammatories for my body aches and pains.  Eventually my GP recommended to stop the long term anti-inflammatory treatment, and it was then that the Post-Covid symptoms returned within a week.. Coughs came back along with fatigue, strong chest pains after mild exercise, I was unable to climb a flight of stairs without being short of breath, unable to do housework and perform at work as I did in the past. My muscles became very sensitive and I frequently pulled them, so I had to become very careful with the exercise and movements. I had no problems with my breathing before covid, I could go for long distance runs and walks. I used to have 9 hours of dancing classes a week and rode my bike into work for 40 mins each day. Now, I’m doing almost nothing. I can’t run around the block with the dog any longer without getting any chest pains.

 

Since being referred to a clinic, I started going to classes about breathing and tiredness and learning how to distribute the day. This has helped me to improve. The covid clinic I went to spotted that I was breathing with the wrong part of my chest. It took me 4 weeks of breathing exercises at the clinic to start seeing improvements. I had to retrain how to breathe which was a strong mental challenge. After that I started doing mild exercise. I had a one hour dance lesson a week and I also started going to pilates classes. Although the exercise makes me feel tired, I slowly started coming back to life.

 

Tiredness really affected my day. Before I was doing exercise I was going to bed at random hours during the day, then I started doing the exercise and now I only need to go to have a midday siesta once or twice a week.

 

I used to do lots of business travel but because of travel restrictions I haven’t been doing any. Now that we can travel again, I will resume travel at first opportunity. I won’t let Post covid affect me, life needs to continue. If I need to nap, I will have a nap.

 

How do I cope with day to day life?

 

Brain fog really affected my thinking for many months. It is a very strange feeling and I was uncertain what I was talking about, although I could understand everyone else very well. To get over this, I started having to write down my daily tasks.  

 

At work, in meetings and at certain times of the day, it was clear to me that I couldn’t speak the right words in the right sequence.  When that started happened, and I started realising words came out the wrong way, I excused myself.  At first it was very embarrassing but then I started reading from notes and asking people to repeat what I said, just to check that conversation made sense.  I spoke to my colleagues about the effects of Post Covid and at whilst at first they were very surprised to meet someone with it, now they are now very supportive.

 

Mental health is something that is very important for people. In the past I went through some depression which is something that a lot of people go through. I did some CBT (Cognitive Behavioural Therapy) which makes me now able to understand and realise all the issues as they are surfacing, rationalise my thoughts and put them to rest before they even become an issue. This has really helped me through my post-covid syndrome.  I think CBT should be in the school curriculum as a life skill. I would urge someone who needs help to get support with mental health.

 

Please send any feedback or suggestions for further resources to nhsnwlccg.communications.nwl@nhs.net