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-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.

My first symptoms were sickness, diarrhoea and sometimes joint pain, which was quite not nice to live with. So then after that it went to just sickness and diarrhoea until about mid this year, around June, July. And then, and then just, as in like, it started last night actually, I’ve, I developed these really, really agonising heart pains that like, they come on and off, but really frequently. So, like I have it for ten seconds and then I’m fine for twenty, have it for ten, and then it’s gone for twenty and that, I I couldn’t get to sleep last night which is part of the reason why I’m quite tired today. That’s kind of where we’re up to.

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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.’

So, whenever I do normal activity like I used to do before Covid, I'll just get very breathless and very, very tired. Very tired ‘cause obviously this was in the beginning of college, I started in September. It was the end of September. I got it like mid-September, and I got out and then I was very tired, and I took a week off college because of how tired I was. Like I couldn't do nothing. My legs would start shaking. When I do any like normal activity, my legs would start shaking. I'll get tired very easily and yeah, and I used to get I fall ill more now easily. That's one thing. After Covid I realised I fall ill very easily before. I never used to fall ill that easily, but now I fall ill easily so yeah.

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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.

I think I probably can tell when I’m doing a bit too much, it’s just hard sometimes because you know I get so excited by even feeling capable to do these things that I used to love doing, and then I sort of just do it anyway because I haven't been able to do it for a really long time, and then I have to sort of face the consequences of that the next day, so…Yeah.

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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.

And she was like, “Oh, well, Long Covid’s usually fatigue symptoms and so we’re not going to investigate it because you're not fatigued.” But from my point of view, fatigue’s different for everybody. For someone that’s, like, always busy and active, like, they could be fatigued every day and just be used to it, or whereas someone who doesn't do anything and all of a sudden just feels really tired, but then that would be more noticeable. But, like, for me, like today for example I have felt really tired and horrible, but it… I do get tired with this but it’s more so because I’m just worn out from being in constant pain, it’s not like fatigue as in chronic fatigue, but I just get other symptoms as well, but.

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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‘.

I just… I get back from school and I just go straight to sleep because I’m just so exhausted and I’ve also had really, really awful headaches from Long Covid as well, which then I’ll try and go to sleep to avoid, but then sometimes when I’m actually trying to go to sleep it’s so painful that you know I can’t, so I’m just sort of lying there so that’s… that’s pretty rubbish.

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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.

Yeah, you get your normal… oh, I forget something, but I’m getting it more. I just… I had a… I had to do some… a maths test and I did the thing on the same day, I’d… did revise and I knew what to do, but it was there but I just didn’t know how to do it, it was at the back of my brain but not at the front, so I just didn’t like… and I just forgot stuff, it was more than normal, I would have knew how to do that because I did it a few hours before, but it had just completely gone.

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Headaches

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.

No, I never really had headaches before, but now it’s literally constant, like a constant headache 24 hours a day, and it’s like the kind of… there’s like a baseline headache that now I don’t see as that bad, relative to like when the headaches get really bad, but then I think about… like before I had Covid, those headaches would have seemed really bad, but now, because it’s just the norm to have a headache all the time now, and it kind of… it can blur into the background and then sometimes it’ll be really awful and I won’t be able to sleep and it’s just like something it pushing against the… the sides of my head constantly and it’s really like suffocating.

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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.

So, the months that followed that was severe fatigue, real bad tingling down my legs and like a burning pain, and that’s the only way I could describe it, like burning as if someone had lit gas in both of my feet and there was like a… a fire extinguisher… or fire going… going up my legs. I also then, from that, was getting like muscle pains in my legs as if I’d run a marathon or cycled many, many miles, which I would do before.

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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

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And then I went to—I then I went back to school, and it was very hard to walk up the steps and to move because my knees were really sore. And then I was really tired after two days at school. So, we took the rest of the week off and relaxed. And then mum sent me back to school and again it was hard to walk, and I was very achy. So, then we had another relax. And then nothing was happening, so we went to hospital. Still nothing happened. And then I started to stop walking because it was really painful, but also my legs were really weak. And then well that’s what’s basically been like for ten weeks.

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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.

Yeah, yeah, the mornings is definitely the hardest because that’s when the dizziness happens, so the mornings aren’t good at all, and then as the day goes on, I improve a little bit, but it’s, sort of, up and down, it just, kind of depends what I’m doing in the day and how much energy that takes out of me.

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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.

Oh, yeah, OK, so I dev-, I’ve developed this thing called PoTS: postural tachycardia syndrome, so when everyone else stands up, doesn't their blood go to their head? But when I stand up it goes to my feet and it causes blood cooling in my feet, my stomach, my hands; I get bad headaches; it causes to faint; like and then my heartrate goes up really high: once, I’ve had it up to 200, that was bad, I know.

Yeah, that is bad.

And then my average heartrate it’s like in the 70s, isn’t it? 70s, 80s, but then when I stand up it’s like shoots like up, it’s really scary, and sometimes when I get up in the morning I stand up and I have to catch myself because I’m about to faint.

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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.

Yeah. So, I get a lot of, like, sickness. So, it’s… I’m never actually sick but it just… I feel it in my gut, like, yeah, it’s really gnarly and it’s like you don’t want to eat much, and also, like, I get… so that obviously the stomach pain, the lower abdomen pain, is all… is there most of the time. If it’s not… so I… I’ve sort… we’ve, sort of, worked out a system of how I describe my pain: so we… we go from numbers from, like, one to 10, but sometimes it goes beyond 10, so we have that problem. But so I… so we have, like, an episode where it’s bad, but within that episode there’s peaks and troughs, so where it gets excruciating and where it’s bearable but it’s extremely painful still. And then I’m… I’m sore most of the time, after these episodes I could be sore for two or three days, and it just stagnates it like a two or a three or a four, but then occasionally I get, like, twangs of pain and where it’s like… it could go up to a 10, but it’s only for a few seconds, and sometimes it’s like I get them, like, 10 times in an hour or something and it’s… and just annoying that you just keep get… “Oww,” and then like that, and you just think ‘oh God, is it going to be an episode?’ but then it just goes off.

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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.

I showed many symptoms of Long Cov… of Covid, my symptoms included fevers, headaches, dizziness, and bodily pain. For the past month… for the past I think month and a half, or a couple of months, my symptoms have changed and stayed consistent. But whenever I stand up, or sit upright, or walk, I… my entire body begins to feel immense pain, especially in my chest. My chest also hurts at all times, though not as bad when I'm standing up. My knees and head also sometimes hurt. I also become a lot more sensitive to vibration, especially noises: whenever I hear a loud noise, my head and my chest will start hurting unless I manage to block it out or it stops. Other vibrations hurt my chest more. Anytime I cough, or burb, or yawn, or sneeze, the vibration also cause my chest to hurt.

Because I've been struggling to walk, I have now got a wheelchair to help me when I'm downstairs—and I moved semi… semi-permanently downstairs. My bed is downstairs, and I stay here all day, and this has only been for the past couple of days.

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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.

Yeah, and… and things that I used to enjoy before, like I don’t… I can’t find any pleasure out of eating and like things that I’ve never had a problem with the texture of before, I struggle to eat now because things are very different when you only have the texture, and then with the smell, like, I can’t really like cook things a- alone at home because I can’t smell smoke, and things like that.

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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’.

That was, that’s a big thing, that I couldn't control my temperature. Like, I just felt like I was heated inside. Like, you know, when you're out in the desert, but it was everywhere and I was, I was literally like throw myself around because I was so warm: I had the windows open, I had this big fan because I wasn’t like I wonder what was wrong.

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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.

It’s like hard dealing with the anxiety and everything, and then the symptoms and tiredness and everything like that, and then when I have a panic attack, I go numb and get scared.

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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.

So, in, it was the end of November, beginning of December in 2020. And there were five or six of my classmates got Covid and my year got sent home because of it. I ended up catching Covid from that. I never got able positive test results, but I had some symptoms which were very specific to Covid, such as Covid toes and it was, it seemed to be alright afterwards that I seemed to have, start having my head was spinning spells, gradually increasing over the next couple of months. And then in the middle of January, I had a really weird thing my left arm suddenly went a bit numb and lost sensation in it. I was sent to hospital, and it was just interesting experience. And then it felt after hospital that it gradually got better over the next couple of months. It took a while, so it kind of settled down.

In the February, I came down with a massive fever and some rashes and ended up getting admitted again. Got some fluids and so on that medicines and then I had a low fever from then on. And it’s been really interesting. But yeah, so after that I started feeling not as though my head was spinning as much, but my head was getting quite light and I felt like I was fainting, about to faint. That gradually got worse. Till it got to the point where I was fainting almost every other day and I couldn't really do much. I’d either stay in bed all day or I’d stay on the sofa all day and wouldn't shower for a couple of weeks. That, that was really not a good time.

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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.

And for me, I, well at the start I had it like all the time for I think two or three months, and then, and then I was better for like three weeks, and then I was ill for three to five days, then I was better for three weeks, and then I was ill for three to five days. So, it was a kind of on and off pattern that I was having.

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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.

It’s definitely been fluctuating. I think it was getting worse for quite a while but now we’ve started implementing different supplements like the vitamin C, you know things do seem to be looking up a little bit, it’s just… I just have to be aware of my energy levels, and you know I have good days and I have bad days but being aware that even if I’m having a really good day, not to overdo it because then it would take me a really long time to recover from that, so it’s just trying to be very aware of trying to maintain a sense of [chuckles]… you know maintain my energy and… and not do too much even if I’m feeling up to it, because there are some days where I can do… you know, go to the gym, but then the next day I might not be able to get out of bed, you know?

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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.

His breathing is still loud, so even though the mega episodes of the two, three hours of up to seventy, eighty breaths a minute has stopped pretty much that was only last month, in the last month, like in the beginning of June maybe. Other otherwise it sort of up until the end of May he was still having even if it was one a day, he was still having episodes of. Mostly in the morning, he was waking up and his breathing was really, really fast and then, as the day went on, it would get better. But he still does have, throughout the day, it’s a lot noisier than it would be normally. It’s a lot it still gets a bit fast sometimes.

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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.

I think because it’s all he’s ever known it’s been part of his life. I think now he’s getting a little bit older, he’s just started to verbalise things, so he’s just started to be able to say things like, “Brain,” “brain cold,” and this week he went and got a towel out of the kitchen and he made me run it under the tap and put it on his head, and he’s been able to say, “Legs hurt,” he got, “Noodles,” so for ages I couldn't work out what the ‘noodles’ were but they’re pins and needles. So, it’s like it’s opened up a world for us really with him being able to just say the odd word and being able to work out what it is.

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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.

She, she doesn't like to have headaches all the time. And she hates the fact that things taste funny. So I said to her, what, if you can describe how foods taste, what would you say? I said, you know, when we had Covid to mummy things were like, like they were horrible. It’s like a metallic taste. It was hideous. And she said, ‘only way I can describe it mummy is everything tastes like vomit’. And that’s what she says. I was like, ‘Oh okay.’ I said, ‘What about your crackers?’ And she said, ‘Well my crackers are fine because they don’t really taste of anything.’ I was like, ‘Yeah, that’s true.’ You know, today I try and get her to try something different.

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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.

She has… you know, I think the first three months of this year her quality of life has been horrendous she’s not had any joy in her day. But the last couple of weeks I think… which is why I’m probably slightly chirpier today, we’ve seen a bit of an improvement. So, we’re absolutely thrilled. We’ve got an MDT (Multi-Disciplinary Team) meeting next week to try and plan a way forward with her recovery, which I feel now is possible. I feel she’s just slightly out of this kind of acute stage, I don’t know why, and I don’t think… but… so she’s started talking again, her brain fog has lifted, and she’s started just playing with her right hand in the bed and interacting for longer periods of time.

You know, before she had complete brain fog complete sound intolerance, you know, she was just so ill. You know, when people are that ill you do wonder about, like, just sedating them to try and bring them back, you… you know, the level of suffering she went through I think was extraordinary. She can’t wash, allodynia is awful, you know, it was just horrendous. Yeah, just a really sick child. And they just put her down to being awkward in the hospitals which was really hard to take because she’s not, she’s not an awkward child, she’s really lovely and she’s up laughing now a bit and talking again and you just think, ‘actually she was just really ill’ and they were keen to just say she was awkward, or I was awkward.

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