Symptoms and changing symptoms

The topics covered in this section include:

  • Common symptoms
  • Changes in symptoms
  • Younger children’s symptoms

Common symptoms

In this section we explore the most common Long Covid symptoms that children and young people reported. People spoke about many different symptoms, including:

  • Extreme tiredness
  • Brain fog
  • Headaches and migraines
  • Pain in muscles, bones and/or joints
  • Numbness in arms and legs
  • Difficulty breathing
  • Heart racing or an unusual heartbeat
  • Dizziness and fainting
  • Stomach pain, nausea and vomiting
  • Diarrhoea and/or constipation
  • Acid reflux and burping
  • Changes in taste and smell
  • Anxiety
  • Disruption to sleep

Sometimes symptoms were persistent across several months, making day-to-day life hard. Tiredness was a particularly common symptom. Most people noticed changes in their symptoms over time. Some people described improvements, or that symptoms became easier to live with. The journey to recovery could be challenging, and people had good days and bad days.

Most people we spoke to described being affected by multiple different symptoms. These symptoms might all happen at the same time or change across several months.

James experienced a range of different symptoms. He started with sickness, diarrhoea and joint pain, and had recently developed heart pain that was keeping him awake at night.

In the next sections, we consider how people talked about the most common of these symptoms.

Tiredness and troubles with sleep

Extreme tiredness was a significant issue for lots of people we spoke to. Before Long Covid Evie loved running, badminton and netball, but has been too tired for these sports recently. She said the fatigue made her feel ‘weighted down’ and that she wanted to sleep all the time. Bella said that before Covid she was ‘very strong’ and would pick up her friends to show off her strength. Long Covid made her feel achy and weak. Abigail knew there was something wrong because she went from ‘running about to lying on the floor complaining that I’m too tired’. Normal activities, like walking to school, could be exhausting.

Normal activities that Kiran used to do before Covid now made her breathless and ‘very, very tired.’

Doing a lot of different activities could bring on a wave of fatigue. Eleanor said it was important to ‘save my energy’ because if she did too much then she would be ‘wiped out’ for a few days. A strategy that children and young people spoke about was choosing just one thing to do each day to avoid getting too tired. Hannah, a young woman in her twenties, would pick one activity a day, such as going to the supermarket.

To hear more people talking about this, see Self-management and self-care of Long Covid at home.

Evie found that if she got ‘excited’ when she felt well and did too much, she would have to face being tired the next day.

Sometimes people felt that their fatigue was not a symptom in itself, but caused as a result of other symptoms. For young people like Daisy, who were living with pain every day, this made them more tired than usual.

Daisy felt her fatigue was different from other people’s and was due to being in pain all the time.

Despite being very tired, it was sometimes hard for people to get the rest they needed. Evie felt that sleeping often didn’t leave her feeling refreshed. Sometimes young people’s sleep patterns were disturbed, which made it hard for them to get a full night of rest. Lucy A talked about having ‘bad insomnia’ which meant she ‘just couldn’t sleep’. Gracie had started having night terrors. Troublesome symptoms, such as headaches, could also make it difficult to get to sleep.

Evie is so tired after school that she often goes straight to sleep. This is sometimes a challenge because of ‘awful headaches‘.

Though it was common, tiredness and trouble sleeping was not an issue for everyone. Daisy described sleep as ‘one of the main things that hasn’t really been affected.’

Brain fog

Lots of people spoke about experiencing ‘brain fog’. Samir said it made it difficult to remember things and to concentrate. Ben said it made him feel like he had ‘lost what he is supposed to be doing’. Evie said it was like her brain was a ‘cement block’. Brain fog made it hard for some young people to concentrate at school.

Ben’s brain fog made it difficult for him to do tests at school, because he couldn’t remember information he had revised.


Headaches were a common issue. Lucy A, Eleanor and Malaeka described having constant headaches. Evie said it was now ‘the norm’ to have headaches all the time. Gracie described them like a drop of water making ripples in a pond. As well as being painful, headaches could make sleeping difficult. Some people took painkillers or specific headache medication which helped with the discomfort.

Evie described it as ‘the norm’ to have headaches all the time now. Sometimes the headache blurs into the background and sometimes it stops her from sleeping.

Pain in the body

Lots of people we spoke with described having pain in their body. Hina had pain in her legs and back which she said, ‘just comes out of nowhere’. Some people felt pain mostly in their muscles, and others felt it in their bones. Twelve-year old Katie said it felt like ‘all my bones were hurting’, and that she felt like ‘an old man’. Harry said he had pain in his whole legs. Zohaib said that his arm and leg muscles were the achiest. Aching limbs made it hard to do normal things, like walking to school. Lucy A’s arms would start to hurt when she was trying to wash her hair. Felix found that his pain was worse in the heat.

Xanthe said she felt like someone had lit a fire in her feet that was travelling up her legs.

Joints were a particular sore spot for some people. Bella’s joint pain moved around her body. It had originally been in her ankles and hips, which had improved, but moved to her fingers and knees. It was hard to write with a pencil because of her painful finger joints. Abigail struggled with pain in her jaw. Gracie said that her fingers would sometimes pop out of their joints, which was uncomfortable. Kiran’s bones would make cracking noises, which she found disruptive when trying to do quiet prayer.

Bella found walking to school made her knees very sore. She eventually had to stop walking because it was ‘really painful.’

Age at interview 10

Gender Female

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Feeling breathless and dizzy

Feeling breathless and dizzy sometimes appeared to be caused simply by sitting or standing up, or by walking. This might also be accompanied by their heart beating very quickly and sometimes lead to fainting. This made it difficult to get on with everyday things. Others described milder and more manageable breathlessness and dizziness that improved across the day.

Rosie felt her dizziness was worst in the morning. It would get better across the day depending on how much energy she had.

Amal and Michael have both been given a diagnosis of postural tachycardia syndrome (PoTS – an abnormal increase in heart rate that occurs after sitting up or standing) to explain their dizziness and fainting.

Gracie described PoTS, where you experience an increase in heartrate when you stand up. This caused headaches and fainting.

Stomach problems and gastrointestinal changes

Having pain in the stomach or abdomen was also common. For some people it was temporary, and for others it was there all the time. Malaeka said that the pain and discomfort made it difficult to sleep. Hannah struggled to eat because she was feeling nauseous all the time. Callum described ‘stabbing pains in the gut’, and cyclical experiences of diarrhoea and constipation.

Daisy experiences stomach pain all time. It is sometimes ten out of ten painful.

Jasmine and others also talked about having problems with ‘acid reflux’, where stomach acid comes back up the throat and causes a burning pain in the chest. Samir reported burping a lot.

Samir feels a lot of pain and is very sensitive to vibration.

Changes in taste and smell

Long term changes in taste and smell affected a lot of people. Evie said the loss of taste and smell took the pleasure out of eating. Amira said she misses the taste of orange particularly. For others common tastes and smells became different, sometimes replaced with unpleasant alternatives. These changes led some young people to avoid eating, with consequences for their weight.

Evie can’t find pleasure in food since she lost her taste. She doesn’t feel safe to cook alone because can’t smell smoke.

Other symptoms

Long Covid could involve a wide range of other symptoms as well as those described above. Rapid changes in body temperature were an issue for some people. Lucy A was ‘always hot’, and had to have a fan on over the winter.

Gracie had times when she was so hot, she felt like she was ‘out in the desert’.

Daisy found that her menstrual cycle changed, with her period pain now ‘excruciating’. Samir said he had an increased sensitivity to vibrations. Freya’s skin on her hands and feet would flake off and she also experienced tinnitus (ringing in ears). Gracie talked about losing clumps of hair, and how her ‘hairline is still not right’ because of it. Amira and Hannah both said that they had experienced panic attacks.

Amira found having Long Covid made her more anxious and would sometimes get panic attacks.

Kiran, and others, felt they had become more prone to illness in general, and found it took longer to recover from a cough or a cold than before having Long Covid. Ricky, a parent, lost his sense of smell, and his daughter had developed a ‘non-specific rash’, which they weren’t sure was due to Covid.

Symptoms over time

Most people experienced changes in their symptoms over time. Sometimes symptoms were sequential, with a particular set of symptoms lasting a few weeks or months before improving and being replaced by others. Xanthe was surprised when she developed a new symptom five months into her Long Covid, with her joints suddenly becoming inflamed.

Jake’s symptoms changed across several months. These included discoloured toes, head spinning, numbness in his left arm, fever, rashes, and fainting.

Symptoms could be cyclical, with periods of recovery followed by periods of relapse. Gracie said it was like ‘you’re in maze and like you turn around the corner and like, ‘oh, this is going to be the end’, but it’s just a dead-end’. An increase in difficult symptoms was sometimes triggered by having ‘over-extended’ themselves, or were triggered by having another illness, like a cold. When Jasmine got Covid again it made some of her Long Covid symptoms worse.

James went through an ‘on and off pattern’ of feeling better for three weeks then feeling ill for 3-4 days.

Some young people felt further along a journey of recovery, and had noticed their symptoms getting progressively better at the time we spoke with them. They thought it was important to take things slowly and to recognise that there might be good and bad days.

Evie felt that things were ‘looking up a little bit’ with her symptoms but was still careful about maintaining her energy levels.

Younger children’s symptoms

To find out about younger children’s experience of symptoms, we spoke with their parents. A challenge for parents of younger children, or children with communication difficulties, was in helping them to express how their symptoms felt. Razia’s baby son was affected by Long Covid, and she described the difficulty of getting it recognised. He struggled with breathing, which had gradually improved over six months.

Razia’s one-year-old caught Covid in January 2021. He had breathing difficulties but this improved over time.

It was easier for parents to support children when they were able to express what they felt in their bodies.

Michelle’s 4-year-old son started to be able to verbalise symptoms, like ‘brain cold’, as he got older.

One of the ways that parents of younger children judged how symptoms were progressing was to assess the impact on everyday life, such as whether they were participating in activities they usually enjoyed or how they were eating.

For Deidre’s daughter most food tasted ‘metallic’ and ‘like vomit’. She only wanted to eat plain foods.

Experiences of recovery were similar for younger children, with good days and bad days. Some parents discussed their optimism when they started to notice symptoms improving for their children.

Sasha was pleased when her daughter’s Long Covid symptoms started to get better after a difficult few months.