Long Covid: diagnosis and recovery
What is long Covid?
It is estimated that one in 10 people who contract Covid-19 have ongoing symptoms for 12 weeks or longer. Long Covid is diagnosed when these lasting symptoms cannot be explained by an alternative diagnosis.
Being diagnosed with long Covid does not seem to be linked to how ill you were when you first got the virus. As this is a new condition, lots of research is being done to better understand what causes it and how to help people living with it.
Symptoms of long Covid
Symptoms can vary a lot, fluctuate over time, and may have an impact on your ability to do day-to-day activities.
There are many symptoms of long Covid, the most common are:
- extreme tiredness
- shortness of breath
- muscle ache
- difficulty concentrating/memory loss/confusion
- loss of smell or taste
- trouble sleeping
- fast heart rate.
Experiencing these symptoms?
If you are concerned that you may be experiencing long Covid, please contact your GP. Your doctor will firstly want to discuss your symptoms with you in more detail and they may want to carry out some further tests. Depending on the outcome of these tests, your doctor may then refer you to the long Covid service.
To be eligible for a referral to the long COVID service, you and your doctor must have completed the necessary tests to rule out other diagnoses, you must be 18 years and above and live in Tower Hamlets.
Support for patients in Tower Hamlets
Full details of the support available for residents in Tower Hamlets are on the North East London Health and Care Partnership website.
As we learn more about the best way to treat long COVID, we are continuing to develop our local services to support our residents. The latest information is available via the following web pages:
- Barking and Dagenham, Havering and Redbridge - NELFT long COVID web page
- City and Hackney - Homerton long COVID web page
- Newham and Tower Hamlets - North East London Health and Care Partnership web page
- Waltham Forest - NELT long COVID web page.
We are also working on a range of activities to reach out to local communities to raise awareness of the signs and symptoms and how to get support. These include:
- a long Covid patient video with translations in different languages
- patient leaflets for each local service
- an easy-read version of the leaflets
- communications for homeless people so they can access the support they need.
- working with local community groups to understand their needs
- providing local information on non-medical services, such as housing, finance and employment support
- working with local Healthwatch to survey local residents to ask them about long Covid symptoms and whether they have tried to access any support
- developing webinars and group sessions for patients to discuss their symptoms.
Overcoming long Covid: a patient's story
Suffiyah Davies, a Tower Hamlets resident, tells her remarkable and inspiring story of how she developed long Covid and went on to make a successful recovery.
“I got COVID back in December 2020”, Suffiyah recalls. “I felt pretty bad, with a lot of pain, extreme fatigue, headaches, and after a week started experiencing breathing difficulties. I called 111 and was admitted to hospital. I tested positive for COVID”.
During her time in hospital, Suffiyah saw first-hand how hard staff were working to care for patients. She could see patients starting to get better and then deteriorate again. She was determined to get out of hospital as quickly as possible.
However, after getting out of hospital and the virus had passed, it was then that the ongoing problems started. She felt weak, had no energy, a mouthful of ulcers and experienced hair loss. It became clear that Suffiyah was suffering from what is called long COVID.
Long COVID is diagnosed when symptoms from a COVID infection continue after 12 weeks and cannot be explained by an alternative diagnosis. Symptoms can vary a lot, fluctuate over time and may have an impact on your ability to do your day-to-day activities.
Recovery and rehabilitation
“My first thought was a fear of not recovering and the mental side knocked me for six. I realised that if I wanted to get better I needed to take action myself, and not just medically.“
“My first plan was to rest, take small steps, and take supplements such as iron. I went to local parks, which had the effect of a therapy for mind and body. Victoria Park in Hackney became my saviour, and I noticed an immediate change in my mental health.
Suffiyah did this for a while, making regular trips to the park and spending time in the café, until she was ready to step up to next level.
“I wanted to be me again. Walking really helped and I would recommend this to everyone. You are on your own, can focus on your own feelings and it really has positive health benefits, including your mental health.
Help from Tower Hamlets Long Covid Service
But Suffiyah realised that she couldn’t do this alone and reached out for support. After seeing her doctor, she was referred to the long Covid services in Tower Hamlets. As well as being provided with medication, antibiotics, and steroids, she went initially to a respiratory clinic and then moved over to the local long Covid clinic.
This consisted of phone calls, conversations about breathing, discussing symptoms, and progress checks, all of which formed part of her rehabilitation process.
And rehabilitation is the key to recovering from long Covid. It is retraining the body and mind. There is currently no quick fix and medication alone will not ensure your recovery.
Suffiyah says “It’s your body. If you want it back, you need to work at it. I wanted to feel better, so I made sure I took action, with the support of the long COVID clinic. As well as my trips to the park, I started to do more exercises, as well as yoga and medication.
“And this course of action forced me to make a difficult decision: what to do about work. I decided that health is more important than wealth, as without health you have nothing. I made my health my priority.”
The good news is that Suffiyah now feels she is back to 80 to 90% normal, her mental health is much more positive, and she has taken on a new role for work.
“Making time for myself has worked. Going for a coffee, sitting in the corner and reading a book, meeting friends and listening to music are all part of your recovery journey. It also helps having positive people around you to support, so the more people who know about long Covid and its impact, the better.”