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What should long Covid be called?
What should Long Covid be called? Long Covid is the name that patients came up with for this condition when it first emerged in 2020....
Here we focus on the experiences of people who still had symptoms many months after they first had Covid.
This page covers:
Most of the people we interviewed had had some symptoms when they first got Covid. In the first few days of being unwell, these ranged from mild to severe. Grayson described how his symptoms “all kind of swirled around like they were playing some game of tag” for the first 12 weeks. They would sometimes come “all at once” and sometimes one at a time. Sometimes a particular symptom would disappear for a week or so and then come back. Jamie had felt really unwell when he first got Covid. A couple of days after his breathlessness started, he had to go to bed with “the worst flu ever… like a cross between flu and sunstroke”. He said his whole body felt “horrendous”. When he thought he was getting better, he took his child to the park but when he got back, he was so unwell that he felt “horrible”. Annabelle felt “very unwell” initially and had to take four weeks off work, “which is quite significant for me.” She had to take more time off a few months later because she “couldn’t get out of bed in the mornings.”
Jennifer had thought that she was getting better, but when she tried to get back to running, she realised she was still very unwell. Tom thought he was fully better, apart from a “bit of a cough” and occasional tightness in his chest, but several months later he developed a deep-seated weariness that destroyed his ability to concentrate. Richard also got worse, after thinking he was starting to get better.
People with long Covid described a lot of different symptoms. They included:
People found it hard to make sense of their long Covid symptoms, particularly in the early part of the pandemic when long Covid wasn’t properly understood. Their symptoms had a huge impact on their day-day life. Many people we spoke to had had a large number of symptoms. Claire said: “I mean I had tons of symptoms; I think at some point I listed them and there were about forty-odd.” Maria counted 45 symptoms that she had experienced, and Sarah said that the number of her symptoms had reduced to around 8 or 9 “that have lingered ever since” her initial infection. Ben had a lot of different symptoms, including joint pains, chest pain, groin pain, shortness of breath, headaches and disturbances to his vision, dizziness, problems with his skin, scalp and hair, pins and needles, and brain fog.
People who had experienced a wide range of symptoms could feel like their bodies were out of control. Some symptoms were there all the time. Others came and went, often without any apparent reason (See ‘Thoughts about recovery and the future’ for more about changes to symptoms and improvements over time).
It was not unusual for the people we spoke to have experienced dizziness. This could feel like a severe spinning feeling, or nausea or seasickness. Some people’s dizziness came on rapidly and was unpredictable. Some people became dizzy after making sudden movements or when they were very tired or after standing for long periods of time. Like Grayson, Jamie had found his dizziness frightening at times.
It was also common for people to talk about headaches they had experienced. Frances described “blinding [and] splitting headaches” which prevented her from doing anything. Laurie and Anthony spoke about extremely painful and debilitating headaches.
Adele, Ellen, Shakila, Ben and Raj now had problems with their body temperature. Ben said “I don’t have a comfortable temperature. I’m cold trying to get warm, and then I am so hot that I need to do something about it. It’s never that middle ground”. Adele described a “spine-chilling type of feeling” which was “like cold water being poured down your back”. She said it was completely overwhelming, “really, really disturbing” and “probably one of the most bizarre symptoms” that she had “this awful feeling of my blood running cold all the time”.
Several people experienced a high heart rate (tachycardia), even when they were resting, and other cardiac symptoms, such as chest pain or high blood pressure. Laurie said she would be sitting down knitting and notice on her Garmin watch that her heart was beating as fast as if she was working out at the gym. Ellen had a number of heart and chest symptoms: “the chest pain was both sides and there was also chest tightness where you just felt you were just getting squeezed. It was more than pain; it was just you were struggling for breath. [I also had] heart palpitations or times where my heart was like looking at a cartoon where your heart was bouncing and coming out [of your chest] and it was horrible.” Ellen, Adele, Ben and others had all sought medical help for these symptoms. Adele had chest pain when she first became unwell. This flared up again nine months later when she started trying to do some exercise. She had intense chest pain and “classic” angina symptoms: “it was brought on by exercise, it was relieved by rest, it would sometimes radiate down my left arm.” Ben experienced a racing heart and other heart symptoms.
Both Lynne and Emily experienced a worsening of their asthma symptoms after having Covid.
Ongoing changes to smell and taste was also something that several people told us about. For some, like Hazeem, Fiona A, Annabelle, Susan, Emily and Zoya, their smell and/or taste had never quite returned to normal. Ricky was getting “distorted” smells and tastes that would come and go: “such a weird taste and smell [and] a real strong taste at the back of your throat”.
For a time, Megan was getting “just this awful horrendous smell” before feeling like she was then able to smell less in general. Emily was also getting a “horrible smell [like] eggs are cooking” and her taste had changed: “I still can’t eat peppers, they taste disgusting [and] red wine is disgusting”. Robert’s only long Covid symptom was his loss of taste and smell. This still really affected his day-day life more than a year after he first became ill. At first, he lost these senses completely. He began to get some faint smells and some “replacement” or “blocking” tastes and smells which were “weird” and unpleasant.
Robert’s loss of taste and smell has taken away his enjoyment of making and eating food. It has been very difficult for him because he is a chef. His long Covid symptoms have taken away a lot of the pleasure of cooking for other people, at home and at work. Diane’s sense of taste had come back a little bit and she tried to stay optimistic about it returning fully. Hazeem felt like he was missing aspects of his life because of his reduced sense of smell.
A common symptom that people talked about was debilitating fatigue. People described feeling completely exhausted after trying to do simple everyday tasks, such as walking a short distance or shopping. This could have a life-changing effect. It affected people’s ability to work or look after their family or do other things that were important to them. (See Managing long Covid day to day and Work and long Covid).
Many people said they found it hard to describe the fatigue they experienced. Esther used several different words to convey just how tired she felt. She told us that before she had COVID her life was “was very active” and she was “able to do a lot of things a lot better, and my thinking was completely different from what it is now at the moment.” Now she felt “very fatigued, very tired, lazy, and exhausted”. Milembe said, “[the fatigue], you can’t explain it”. Irene said, “the tiredness was just horrific, absolutely horrific… I just can’t describe it, [it was] devastating.” Zoya described it as “extreme energy loss”. Sam said: “I can’t ever describe a fatigue like it. I can only describe it as like being plugged into a socket [and] someone had pulled the power out. Like all of my energy was just gone, like I couldn’t eat. I could barely talk.” Frances and Emily described the fatigue and lethargy they felt as “overwhelming” and Ellen said, “I’ve never felt anything like it”.
For some of the people we spoke to, their fatigue could cause an overpowering need to sleep. But some people reported poor quality sleep or feeling unrested even after sleeping for much longer than usual.
Some people said their fatigue came in cycles, so they could manage to function reasonably well for short periods before their fatigue kicked-in, forcing them to sleep or rest. Some people described how ‘post-exercise malaise’, a complete exhaustion after they had done too much, could last for several days. Paul said the “post-exertional malaise [is] the only reliable thing about [Long Covid] really.” Susan said, “the post-exertional malaise has been what’s sort of stopped my living, as it were.”
Many people described how their deep-seated fatigue affected their ability to think clearly, to take things in and to ‘process’ or remember things like names, words and recent conversations. This was described as ‘brain fog’, having a ‘foggy brain’, or feeling like their brain was ‘shutting down’. Laurie said having brain fog was “the worst thing” for her and it was “really, really distressing”.
Brain fog had a noticeable impact on daily life because it made everyday things like making simple decisions much more difficult than they had been in the past. Frances was “unable to make a decision about anything [and] it was just really debilitating”. Even being asked if she would like a cup of tea felt like “a really big question” to her. Anthony said that brain fog made social interactions “very tiring” and that even a telephone conversation “scrambles my brain”.
Not surprisingly, the people we spoke to also talked about the psychological impact of being so unwell for so long. Most had been healthy and leading very active lives before they developed Long Covid. They described how some of their physical symptoms made them worried, anxious or frightened (see more on the emotional impact of managing long Covid symptoms). Annabelle had experienced hair loss since having Covid. She said the psychological impact of that had been “a huge thing for me… I’ve always had thick long hair. My hair is now non-existent [and it] really bothers me”. Some people had noticed that their physical symptoms could get worse when they were feeling anxious and vice versa. Shaista said, “when I’m feeling stressed the coughing immediately kicks in [and] shortness of breath kicks in.”
Feeling constantly unwell and not being able to get back to their ‘normal’ life made some people feel depressed from time to time.
For people who had pre-existing health problems before getting Covid, it wasn’t always easy to tell if their symptoms were due to Long Covid or the conditions they had previously been diagnosed with.
Others had noticed that having Covid had made existing health issues flare up. Adele said her eczema and psoriasis had got worse. She thought her joint pain had got worse too. This made her wonder whether there was an “auto-immune” component underlying her symptoms.
In other sections of the website people talk about how their exhaustion, brain fog and other symptoms affected their lives: see Managing Long Covid day to day and Work and Long Covid. They also talk about trying to find help, information and support. Sometimes this was through health care professionals, like their GP. Sometimes it was through other sources of help and support. Online peer support had been particularly important for many people, especially early in the pandemic. The experiences that people described when they talked about their symptoms could be all the more difficult for people because Long Covid is still such a new and poorly understood condition. It will take some time before health care professionals are sure about what is the best way to treat various types of symptoms.
Another section of this site covers how a wide range of people experienced becoming unwell with Covid and then recovered within the first few weeks after contracting Covid-19.
What should Long Covid be called? Long Covid is the name that patients came up with for this condition when it first emerged in 2020....
Here we focus on the experiences of people who still had symptoms many months after they first had Covid. This page covers: The range and...