A-Z

Long Covid In Adults

Symptoms of long Covid

There will be a new part to the website in 2022 which describes how a wide range of people experienced becoming unwell with Covid and then recovering in the first few weeks after contracting Covid-19.
 
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 pattern of symptoms that people with long Covid have experienced
  • Experiences of fatigue and brain fog

The range and pattern of symptoms that people with long Covid have experienced

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”.
 
Jennifer had also 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.
 

Jennifer thought she had recovered from Covid. When she tried to get back to her training for a half marathon, she felt “awful”. Her heart rate and blood pressure were high.

Jennifer thought she had recovered from Covid. When she tried to get back to her training for a half marathon, she felt “awful”. Her heart rate and blood pressure were high.

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I got better, I felt like I was over it. I had a couple of weeks I felt I’m getting back to normal. And because my focus before it had been on the half marathon training, and at that time we thought it’s just a virus, you’re over it, and things were locked down, but they were talking about it all being open by the summer. So, my half marathon was September, so I thought I’ll get back to training, I’ve lost, you know, almost two months. So, I went on a little run round my block basically [laughs] and, that was quite tiring. It was, it was barely a run as far as I was concerned. So, I left it another week and thought right, I’ll just see how I feel. Went on another run and that one was terrible, and my heart rate was over two hundred and I thought I was going to pass out and, I was just like oh this isn’t right. So, I was in bed the next day, I had like a definite relapse, felt awful. And then on the Monday I, that was the weekend, and on the Monday, I felt well enough to take my dog on a little walk, but when I was out, I felt dreadful and I felt really odd, just can’t even describe it, just dizzy and odd. So, I went home, and I said to my husband, “I don’t feel right, I feel this, I feel my heart was going and I just felt really strange.” So, he has a blood pressure monitor, so he took my blood pressure and it was high, my heart rate was high, so we phoned the doctor and she went through a few things with me about, it’s not a heart attack basically, but this isn’t right so, you know, rest up.”

 

Five months after he thought he had fully recovered from Covid, Tom was suddenly hit by crippling fatigue and brain fog.

Five months after he thought he had fully recovered from Covid, Tom was suddenly hit by crippling fatigue and brain fog.

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By the time I got to the middle of April, then, I considered myself to have fully recovered, and the definition of full recovery then was, I had a bit of a cough left, which I've never had before, and an occasional tightness of chest, but that was it. April, May, June, July, August, all passed, there was no issues, you know, the cough started to, you know, was going away, there was still just a tiny remnant of it. But then I got to the, September, and from nowhere, I was hit with this absolutely crippling fatigue. The term brain fog, I think it’s a kind of fabulous couple of words that can describe a whole kind of plethora of conditions. But, you know, it absolutely fits for, for what I suffered from, or am suffering from. I tried struggling through it, failed miserably, you know, I've never taken time off work before, but I ended up being signed off for five weeks.

 
People with long Covid described a lot of different symptoms. They included:
  • Extreme tiredness and fatigue
  • 'Brain fog’, difficulty concentrating and memory loss
  • Difficulty breathing and breathlessness
  • A high heartrate or other heart (cardiac) symptoms
  • Dizziness
  • Problems controlling body temperature
  • Loss of taste and smell
  • Problems with vision
  • Aching joints and muscles and body pains
  • Numbness and/or pins and needles.
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-to-day life. Many people we spoke to had had a large number of symptoms. 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.
 
 

Adele had a very wide range of symptoms. Her symptoms came in waves over more than a year and affected every part of her system. As a doctor she struggled to make sense of it all, especially some of the stranger symptoms.

Adele had a very wide range of symptoms. Her symptoms came in waves over more than a year and affected every part of her system. As a doctor she struggled to make sense of it all, especially some of the stranger symptoms.

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So, I guess I was expecting, a bit like when you have the flu, to wake up one day and for things just to be better, but that never really came. I would describe it as waves of feeling unwell, and those waves would actually start numerous times a day, when I was in the very acute. I would have moments where I'd think that it’s passing, I must be getting better, now, that was the, that was the bad bit. Actually, it all just recurred over a period of weeks. I don’t know if that was my fever spiking, or the virus replicating, and increasing in my system, I really don’t know. But that was a persistent feature, and really difficult, because every time I got worse, it made me feel a little bit let down.

That second acute phase, where I was a bit doolally, in honesty, that kind of petered out, into a more subtle phase, which lasted, gosh, probably about a year, a year or more, so until now, in varying degrees of intensity. So, I have had what they’re calling long Covid, I’ve had ongoing symptoms, some have been cognitive, so even now, I'm struggling to do the job that I was doing before I got Covid. When I was in the thick of it, maybe eight months ago, I was struggling to do things like read anything, watch TV, follow recipes, you know, I just, I couldn’t really do anything, I couldn’t work out how to put stuff in the washing machine, or hang out clothes on the clothesline, I couldn’t organise the process in my head. Things definitely have got better, in terms of the cognitive, in that way.

I also joined a, a group for doctors with long Covid, which was super helpful for me, actually, because there was so much information. It was just so good to speak to other people who were going through the same thing. Because a lot of the symptoms that I had in that third phase, protracted long Covid, were bizarre, and difficult for other people to believe, I think. And they affected just about every system going. So, headaches – if I start from the top and work my way down – headaches and migraines, I had ongoing visual disturbance, in terms of the scintillations, the flashing lights, for quite some time. A change in ability to focus my eyes, as well. postural headaches, so headaches when I would stand up. A lot of postural symptoms, so heartbeat absolutely racing, there were times just standing up. I remember feeling so unwell when I stood up to just go for a shower, so that’s moving from one room to another, really, my pulse went up to a hundred and forty something. And it felt as if, there were extra heartbeats as well, so ectopic heartbeats, and a definite feeling of the heartbeat in my chest. I would also feel dizzy, at the same time. And I came to understand through this group that I'd joined, that these symptoms fit with a condition I had never heard of before, called PoTS, postural orthostatic tachycardia syndrome

So, essentially, it’s the autonomic system that has gone a bit haywire, and is causing symptoms, like the tachycardia, like blood pressure dropping, people call it brain fog, the brain not being able to work properly, particularly when you're upright. All of these things could be accounted for by this, so it was really good to discover that, because then I could look at what the treatments for that might be. So that did represent a bit of a turning point.

And I think, you can probably get a sense that a lot of this illness, because it’s all been new, a lot of it has just been me trying to work out what on earth is going on. And as a doctor, that has been really, really difficult. I can’t imagine what it would be like as a lay person. The neuro stuff, I thought had gotten better, so you know, the phantom smells, the tinnitus, I'd had some strange nerve pain, like a poker in my ear, really bizarre, but it was very, very painful. Strange kind of scalp sensations, as well, but all, all such vague and strange things, I didn’t even mention them to my GP, because I thought she might think I was completely mad [laughs]. So, I'd thought all of that stuff was behind me, and then at, probably, month ten, I developed peripheral neuropathy. So, I started getting ice-cold, and burning hot pains in my lower leg, and my feet, which was really uncomfortable. I also got it in my right hand, and my fingers, with some pins and needles, as well. And in addition to that, the initial leg pain, and restless legs at night, that came back at month ten, as well. So, I'm not entirely sure why it did.

 

Grayson had difficulty breathing, muscle soreness and pain, acute dizzy spells, ringing in the ears, headaches and brain fog. His breathing problems developed into asthma and his dizziness could be frightening.

Grayson had difficulty breathing, muscle soreness and pain, acute dizzy spells, ringing in the ears, headaches and brain fog. His breathing problems developed into asthma and his dizziness could be frightening.

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There was probably then about nine weeks after that of slightly different post-Covid symptoms. So, I’m…I’m just looking at some notes I made at the time of those. So, I continued to have quite acute shortness of breath, difficulty breathing, had to try and keep upright all the time, it was difficult to breathe when lying down, still had a cough though not as bad as during Covid. I acquired dizzy spells this was something completely new. I should have mentioned on my original Covid symptoms that the first place I felt the infection was in my hip where I’d had a hip replacement three months before I caught Covid. And you could definitely feel it in the muscles around the knee joint. In this post-Covid era, the sort of weeks three to nine, I suffered incredible soreness and tenderness of the muscles in both of my hips, particularly the one most recently operated on, but I’d had the other one replaced about eighteen months before. Sorry, about a year before. So, I had a year-old major surgery wound and a three-month-old major surgery wound and around both of those, incredible soreness and tenderness of the muscle sheath. The doctor told me that that’s what he felt it was.

I can only describe it as feeling like a combination of cramp and how you feel after you wake up the next day after you’ve run a marathon. All of the muscles were incredibly sore around that joint and that kind of soreness and fatigue in my hips spread out from my hips. I also had it in my back. But that was probably one of the most acute post-Covid symptoms. I also had quite acute dizzy spells and tinnitus which I had during Covid as well, but it continued quite acutely into that sort of weeks three to twelve period. And also a slight feeling of like having a bad hangover. If you know what I mean by that? It was almost like having a hangover every day, feeling kind of fuzzy, not, you know, brain fog people call it. And all of that lasted until April sometime, in fairly consistent form. It did evolve over time, so these acute dizzy spells which really did quite worry me came for about three weeks and then they went, and they seemed to be associated with the tinnitus in my ears and some of the headaches. I used to, I don’t anymore, suffer from migraines and it was a bit like a post-migraine fog, very similar feeling, which is also a bit like a hangover [laughs].

So just, you know, really feeling not yourself, I was quite, I developed a lack of confidence, a slight wobbliness on my feet, partly I think because Covid interrupted my rehab from my hip replacement and I still haven’t really recovered my confidence of balance and moving around and some of those things. So, it kind of slowed everything down. And then, from April onwards, I have kept what now appears to be, and the doctors are in the middle of kind of diagnosing this, it’s morphed into a late onset asthma. I’ve never suffered from asthma, but I currently have a set of symptoms that look very like late onset asthma. Not acute wheeziness but shortness of breath and difficulty getting lungful’s of air, particularly when I’m sitting in certain positions, or lying in certain positions. Not brought on by exercise or anything like that particularly. So, that’s accompanied by an asthma type cough, not a Covid type cough but, if you know what I mean? If you go like that, it makes you cough, and I can feel like a physical pain in my back and my lungs. And so, I’m still having a few more tests but the doctors think that it has now turned up as late onset asthma. And in terms of the doctors’ care, what I’m experiencing is what I’m sure other people are experiencing is they don’t know. They’re speculating. So, you know, I’m receiving some long Covid treatments, but I’m certainly not in the, like, most acutely affected group, there are people, you know, far worse affected than me but yeah, it seems to be the final manifestation of the lung problems that I had during Covid.

In that sort of middle period, was there anything that you noticed that seemed to particularly trigger flare-ups in symptoms? Was there any pattern to it or was it, from your perspective, quite random?

Yeah, in terms of the dizziness, there did seem to be something to do with my head being at an angle to the left so I was speculating it was in the inner ear. So either an infection or swelling or something in the inner ear, and it would be triggered by sudden movement like that, suddenly you get a dizzy spell. There was a really frightening phase in the middle where it would just come as I was, I could be walking along and suddenly absolutely everything would be kind of, you know, all over the place. Way back in the past I’ve experienced a little bit of Meniere’s disease, I mean you lift your head off the pillow and the whole world swims round. But I’ve never had feeling dizzy when I was upright, so there was a little bit of what felt a bit like Meniere’s when you’re kind of just resting and you move your head suddenly and it triggers something. But this was …but this was, you know, I would be walking in a straight line and literally I had to stop and everything’s moving and if I could get to a chair I’d sit down, but sometimes if I was out walking in the park, I would just have to sit on the ground. And it would go crazy for thirty seconds to a minute and then go. That was frightening because you never knew, you know, it never happened to me when I was driving but I was obviously really worried it might happen when I was driving, or when I was, you know, going up and down stairs or you know, somewhere where I’d be particularly vulnerable. That kind of suddenly stopped about week twelve and didn’t come back. 

 
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.
 
 

Jamie describes his unpredictable dizzy spells as his “scariest” symptom. They affected his confidence in doing things.

Jamie describes his unpredictable dizzy spells as his “scariest” symptom. They affected his confidence in doing things.

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You mentioned before your dizziness, Jamie is that…?

Yeah, that’s been kind of scariest symptoms for me, to be honest. It’s not like vertigo where the room’s spinning, it started off when I went back to work a few weeks later. I kind of just got this, it’s like you’re going to pass out that’s how it started, and it was like a, kind of like a pressure around my neck, I thought it was to do with blood pressure, or something. And it just generally, it kind of gradually got better but it’s like your brain and your eyes aren’t working in unison, that’s the only way I can describe it. It’s not like vertigo where the room’s spinning, it’s just like, if you turn your head too quick, it’s like your brain and your eyes aren’t quite working together properly.

And has that affected what you’re able to do on a daily basis?

It just makes me really anxious. I mean, yeah, on a daily basis, it kind of, it just makes you lose your confidence in doing things. Because you do get dizzy. I mean, I can still drive, I don’t really get it when I'm driving, it’s more when I'm moving around. It’s like, it’s just a really horrible, your eyes and your brain aren’t working together properly, it kind of feels like. I mean, I’ve had a CT scan of my brain, and that came back normal. I did an ultrasound on my heart and that came back normal, as well. So, I mean, nobody really has the answers to tell me what it is.

 
Ben, like Adele and Grayson, 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. Both Ben and Adele 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. Adele and Ben had both 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.
 
 

Ben had a higher heart rate than before. He felt like his heart was “working hard”. He went to A and E when he got chest pain “out of the blue”.

Ben had a higher heart rate than before. He felt like his heart was “working hard”. He went to A and E when he got chest pain “out of the blue”.

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So, the next one is a fairly obvious one, it’s tachycardia, my heart rate is higher than it usually is, and even at rest, it’s now a good bit more than kind of where I was before. And particularly post-exercise and, and using exercise in the lightest of sense there, post walking round a single floor flat, it can be raised considerably. This can tie into interactions with medical staff, or kind of the medical side of it, at both points I ended up in A and E because of it, and my heart rate was kind of one sixty, one seventy, just resting and I think it combines a few different things. It’s a level of anxiety looking at your heart rate, your heart rate then goes up because you’ve looked at your heart rate, you’re in a hospital so you get white coat syndrome and it then goes up a bit, but this was on both occasions it was really quite a high increase compared to my resting heartrate. So that’s generally gone down. I would attribute that to, to what I’ve been doing with [named organisation], particularly. I can go into that detail of kind of what those are but certainly it was the initial impact, it’s now kind of stopped a little bit, but still even walking I would say stairs or any incline, you get quite a feeling that your heart is working hard.

The next one, and this again I’m sorry to bring it in later when it relates to something earlier, I was getting very prickly pain, a very sharp prickly pain. I can really only kind of link it to, if you imagine kind of the pain of sticking your finger in a bramble but almost like a circular version of that and it would move kind of across my ribs, under my arms on both sides, towards my back and at various times that came on, that was what triggered me to go to A and E. And a considerable chest pain out of the blue.

So you were worried that the kind of vice-like pain might be like angina or that kind of thing?

Correct, yes. Just something, something other than just what it was, and certainly on the first visit, I got told kind of, okay, there’s nothing much we can do, we think it’s chronic fatigue syndrome, just rest, but if you get any heart or chest pain, reattend for that, just given that it could be something else. And that has, and again I’ll link onto the medicine side of what helped resolve that, but it was a very uncomfortable pain which again in the anxiety side of it, is it something else than what it looks like? Especially the fact that the second time it presented, it was very linked to kind of heart and felt kind of middle of chest, starting kind of in the back, moving under arms and then moving to the chest so that as quite, quite concerning.

Just as you’re talking about that pain moving around, is that like over seconds or over minutes or over hours?

Yeah, so this was kind of a rapid onset and then it was probably ten or fifteen minutes that it was sore for, got to A and E and it was still quite painful, so by the time I got seen that was kind of half an hour of, of kind of prickly chest pain. And then we looked at the heart rate, that was elevated, it was just attributed to, to that, but my GP actually thinks that that’s linked more to the costochondritis. And that’s linked into how we’ve treated that, and I think that’s actually been fairly accurately treated. I’m quite glad to get that one off.

 
Robert’s only long Covid symptom was his loss of taste and smell. This still really affected his day-to-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 describes trying to make sense of very faint or strange and unpleasant tastes and smells that have begun to come back. Whisky, white bread and hand sanitiser smell the same to him now. He doesn’t feel “quite in tune with everything”.

Robert describes trying to make sense of very faint or strange and unpleasant tastes and smells that have begun to come back. Whisky, white bread and hand sanitiser smell the same to him now. He doesn’t feel “quite in tune with everything”.

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Now I get a lot of different kinds of, I get replacement smells now as opposed to a lack of smell. So, you know, onions and garlic are a, a good one. I think that’s been identified by a few people now. They are, they come out as, like, a weird blocking smell. It’s the only way I can describe it is, kind of like, stale old dusty potpourri with a hint of rotten mouse. Which, I know it sounds weird, but have you ever had a rodent or anything like that go in a house or something. There’s a, there’s a sweetness, the smell of it, and that, that’s in there as well and it’s very strange indeed. And that comes through, and I haven't identified everything yet but with the onions and garlic removed, it’s made a big difference because you can, there are other bits you can taste and it’s very, very, very sharp and clear [audio breaks up], you don’t get [audio breaks up] or anything like that at all. It’s very, [audio breaks up], if you know what I mean. With the other flavours, the other blocking smells and then you tend not to taste the smell, taste, sorry, taste anything apart from, like, the onion and garlic. Weird, sort of, edge, sort of, smell. If that makes sense? [Laugh].

So, when you say a blocking taste or smell, does that mean you can experience those but it’s drowning out everything else?

Yes, it’s like the same smell, from the onions and garlic and then I get off swede at the minute as well. But it’s the same smell or the same, sort of, taste. It’s always the same sort of flavour that comes through which isn't anything to do with what you’re eating. It’s not an attractive, it’s not a pleasant taste or smell. I'm talking more about taste at the minute. But it not any, you don’t get any pleasure from it. It’s kind of, meh, it’s slightly unpleasant at best basically. And that’s about it. So yeah, it is kind of, strange.

When, you remove some of those, bits, I do get very faint bits of flavour coming through. I mean, you get salt and sweet, vinegar, vinegar is a good one. Like a packet of, salt and vinegar [audio breaks up] enjoy now, but it’s because I get the sharpness of the salt the vinegar. But I don’t get the real depth of the flavour. I don’t taste the potato in the crisp and things like that. But it’s almost recognisable but it’s not quite there.

So, yeah, it’s a weird one. With the, with the smell as well, smell’s a funny one because there’s the blocking taste thing backs up in, with the smell as well. So, if I smell onions and garlic, it tastes exactly the same as I smell. But then lots of other smells, it’s like, put a glass of whisky in front of me, a bottle of hand sanitiser and a loaf of white bread, they all smell exactly the same. It’s like the ethanol in the hand [sanitiser bottle]. And in the, in the whisky I can smell, but none of the other flavours. And then weirdly, I presume it’s the additives in the bread. In like a cheap white loaf, say. Because you open that up and it smells like a, like a solvent almost. Or like ethanol almost. But I guess that’s already there. But the bread smells add to it or mask it. So, when you actually smell it normally you, you don't get just that. But it, it’s weird how some have just completely gone and then you, you do get, sort of, strong whiffs of other things. Hand, like, hand sanitiser’s a weird one. I can smell it from miles off when someone puts it on, just the, the alcohol. And I used to have a lot of, solvent-y, sort of, petrol-y type of flavour, smells. They were the first ones to come in after I lost my sense of smell and taste completely.

It sounds as if it’s very tiring because it sounds like you’ve been trying to analyse every food stuff?

You’re trying to find it everywhere because you know it’s there, if you know what I mean, you know. You know when you smell a pack of smoked bacon that it’s, it’s in there and then sometimes you can, you get a little waft of it. But then you can smell it again and you don’t. And that’s weird because it’s like, is that a memory or is that actually bacon that’s making me smell like that because why can't I smell it again then. And it was never a strong smell. It’s always very, very faint. But it’s, yeah, it is. And it, kind of, even in day-to-day life because you’re walking around and you’ve lost, you know, a whole sense, or two, you know, depending on how you look at it [laugh]. But, like, so your, kind of, your environment doesn’t necessarily back up, you know, you’re used to walking down the street and you’ll get smell, smells and bits and bobs, be them nice or not, as you’re walking around. You’ll see things and then you’ll get a smell of a car or something and it’ll back it up, and things like that. You don’t, there’s a hint of numbness about it almost, like, within, when you’re walking around because you’re not, it’s a bit like having your earphones on walking down the road, you’re not quite in tune with everything like you were before. Which is quite 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.
 
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. Feeling constantly unwell and not being able to get back to their ‘normal’ life made some people feel depressed from time to time.
 
 

Sophie found her breathlessness “psychologically demanding”. She felt like she couldn’t breathe, “hour after hour every day for weeks”.

Sophie found her breathlessness “psychologically demanding”. She felt like she couldn’t breathe, “hour after hour every day for weeks”.

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And I then started to get really short of breath, it was just really noticeable, and in the kind of early evenings where I felt like I couldn’t breathe. Like my lungs weren’t inflating properly kind of thing in and out, it was like really shallow breathing, and, I just tried to, ignore that, go for walks and stuff, just probably, you know, it was just tiredness that was bringing it on. It started to get more intense, stronger and then it started to peak earlier, so it was then like earlier in the evening. This went on for a week and it was happening earlier and earlier, when it was then starting in the afternoon, and then, it was like just felt really, really hard to breathe, so I phoned up the doctor, and then she just did a telephone appointment call with me. And she said to me that she thought it sounded very like Covid, and it would just be that the, basically because I said to her, during that time I did actually get a PCR test, which turned out to be negative. And she said that would probably mean, she said it could be that I’ve maybe had Covid, but this is now the aftermath of it. And it’s, affecting the receptors, kind of like how asthma would manifest.

So, she said that would be something that sounded like long Covid at this stage because I was still testing negative, and she suggested it could be long Covid, but they can’t obviously confirm that one hundred per cent, because I’ve not had a positive test for Covid. But she said it did sound very much like it, and she said that it would probably just take time to go away itself, and I was to try and do breathing exercises, I tried that, but it just had no impact on it whatsoever, and she said it would take time, she said that there was no time frame for that, because it’s different for everybody.

I don’t think they understood how bad it felt. I think they just thought, oh, it’s a wee bit shortness of breath, here’s some breathing exercises, and it’ll go away. But it was like, well, for me it was just like I couldn’t breathe, and to have that, like hour after hour every day for weeks is psychologically demanding, because you have to focus your mind out of that dreadful feeling. 

 

Being constantly unwell made Jamie feel depressed, unlike his usual upbeat ‘bubbly’ self. His symptoms caused anxiety. He was frustrated when people suggested the anxiety caused his symptoms.

Being constantly unwell made Jamie feel depressed, unlike his usual upbeat ‘bubbly’ self. His symptoms caused anxiety. He was frustrated when people suggested the anxiety caused his symptoms.

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Do you think that makes it more difficult, that you appear to be relatively normal to people, or some of the people that know you better, would they sort of be able to detect real differences?

I think people notice a difference in my attitude, a lot. I was usually a really upbeat kind of, bubbly, kind of up for a laugh guy, and I mean, I'm getting better now, Kate [Interviewers name] I feel. But the last year, 2020, I mean, I was just, I felt depressed. I was just constantly feeling not well.

And like, like people, the GPs, a lot of them were really great, and I think as they got drip-fed information about long Covid, they started to think, well these people are actually not well. I think a lot of them thought, I got told a lot of the time I was suffering from anxiety. Which I do think, I agree, I do have, I have got anxiety. But it’s the symptoms that are causing the anxiety, whereas they seem to think the anxiety is causing the symptoms, which is really frustrating.

And when you say people, is that the health care professionals you’ve been in touch with, or is that…?

Yeah, some of the GPs seem to think it’s all down to anxiety. And I’ll be honest, Kate [Interviewers name], I think anxiety does play a part. But a hundred per cent, it’s the symptoms that cause the anxiety, which, maybe first, but it’s definitely not anxiety that’s causing the symptoms.

 

Adele recognises “there’s a psychological element to everything” As a doctor, she thought her anxiety could be linked to ’adrenal overload’. She felt ‘on edge’ as if she was ‘full of adrenaline’.

Adele recognises “there’s a psychological element to everything” As a doctor, she thought her anxiety could be linked to ’adrenal overload’. She felt ‘on edge’ as if she was ‘full of adrenaline’.

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One thing that I haven’t spoken about is, I suppose the psychological effects of Covid. So, I do so with a little bit of trepidation, because one of the things that has been really difficult, about this illness, is that a lot of people have wanted to pigeon-hole it as psychological, long Covid in particular. And when you're experiencing symptoms, when you’ve got palpable tachycardia, you know, when you have raised inflammatory markers, when you have palpably sore joints, it’s really difficult to think that people might think that there’s more of a psychological element to it.

I do understand there’s a psychological element to everything [laughs]. What I would say is, because the autonomic system is affected, for months and months, I felt like I was anxious, I felt like I was on edge, I felt like I was full of adrenaline, and I didn’t understand it at all.

I now know that can be secondary to PoTS, and that can be secondary to the dysautonomic symptoms. which gives me a bit more understanding, because logically, I wasn’t, I was trying to think, why am I feeling anxious about things, but I couldn’t give a good answer to that. I didn’t really understand why I would feel anxious, really, particularly when things were getting better. It was only when I read more about, PoTS, and the dysautonomic side of things that, it made more sense. It’s just adrenal, overload, really.

 
Whilst almost everyone we spoke to did not have any major health problems before getting Covid, a few said 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.
 
 

Jennifer had shingles a few months after getting Covid. Her sinus problems flare up when she is having a ‘bad patch’ with the long Covid symptoms.

Jennifer had shingles a few months after getting Covid. Her sinus problems flare up when she is having a ‘bad patch’ with the long Covid symptoms.

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I don’t have too many different symptoms now. I just seem to have the fatigue and the brain fog, and the heart rate thing. And so, there’s things associated with that, like I said, the dizziness; but they all kind of come together. But certainly, in the early days of both Covid and long Covid it was like that, it was like you don’t know what’s coming next, are these random symptoms. And certainly, from reading people’s stories in the Facebook groups some people have a lot more ongoing different symptoms and they’ll say, “I’m, I’m losing my hair all of a sudden.” Or they get, rashes and things. And it’ll just come and go and there’s no real, but it’s just your whole system is just so affected.

I did get shingles last August, and I’ve had shingles, I’ve had chicken pox before, and I got shingles in the August. And that was, again that’s really common that things that are sort of, like shingles lies dormant in your system, so anything you’ve kind of carried on from previous experience will flare up [laughs]. So, if someone’s prone to something it will come back after Covid; it just seems to be it, it ignites all these things again. So, people who’ve had skin issues or something that will come back.

 

But yeah, a lot of people have lost their hair. I haven’t luckily, or eyelashes and things. So, it just, it just affects every system, so anything can happen really because you don’t know what that will bring if it affects a particular system. So, stomach issues, I have reflux that I didn’t have before; I still have that at night. and other people have, like, gut issues, that come and go as well. And people seem to be more likely to have allergies, or if you’ve been slightly allergic, you’ll be more allergic, and things like that. So, histamine issue like seems to be a big deal as well. So, they’ve been more affected by hay fever than they were. I am prone to sinus problems, and I get that, that comes back. If I’m having a bad patch that will flare up. So, it’s just like whatever your little weakness is or has been it, it comes back because of this, your body’s reaction to this virus.

Experiences of fatigue and brain fog

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 ‘Living with and managing long Covid symptoms’ and ‘Impacts on other areas of life’). 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. 
 
 

Adele described how her fatigue completely changed her life.

Adele described how her fatigue completely changed her life.

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And how does that compare with life living with Long Covid, or Long Covid ongoing symptoms?

So, all of that, pretty much, went in the bin my hobbies, my interest, I couldn’t, I just felt so unwell [laugh]. I certainly wasn’t able to do things like look after pot plants, and do gardening, so a lot of the plants died, or got given away, the garden grew wild for a year. Reading, I couldn’t do, I couldn’t concentrate, TV programmes, I would sit in front of, but it’s not being taken in. And it just felt like there was no joy to life. So, I could understand why people perhaps thought there was a stronger element of depression, because your interests, and your pleasure just go, when you're sick and not feeling well. Social interactions obviously became difficult because of lockdown, but also, they were just so mentally draining. There was a while, a period of a few weeks, I think, when I really struggled to have any conversation, it was difficult to follow the conversation, very difficult to take it in and digest it, and then formulate a response. And I had fairly marked word identification as well.

So, speaking to me was, a little bit challenging, because I just couldn’t compute what people were saying, and the time, so the long delays before I would reply, and often, I just got the wrong end of the stick. And the socialising kind of went out the window, and work, of course, I couldn’t work. I tried to work through the first week, and then, I think I was pushing myself to do it, but words were jumping about on the screen. I was working from home, but I just couldn’t focus on anything, concentrate, and then the visual, the flashing lights, the scintillation started. And I just, I stopped, around about a week in when I got really unwell. So, not working was difficult because you miss the social contact, you miss, having a role, you miss having a purpose.

 

Gulsoom said her fatigue made it difficult to do even simple tasks - like sending an email. She could no longer ‘multi-task' and she couldn’t work. Things got easier for her little by little.

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Gulsoom said her fatigue made it difficult to do even simple tasks - like sending an email. She could no longer ‘multi-task' and she couldn’t work. Things got easier for her little by little.

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So I think for the first two weeks, I was, for the first week, I couldn’t really do anything so I was really, really bad and then, after that, the symptoms got better and I was able to move around a little bit but the fatigue lasted at least six to eight weeks. Because going to the local supermarket, I’d come home and I’d fall asleep and also, you know, I started slowly going back to work because I was off work for quite a while. One because my dad was really ill in hospital and two, because I just couldn’t, physically couldn’t, go to work because I was so fatigued. But doing the simple task like sending an email before would take me five minutes, I’d take half an hour sending an email. I’d think, something is not right so it’s only when I rang the doctor. The doctor goes, “You’ve had, you’ve got long Covid.” And I’m like to the doctor, “I’m going to the local Tescos, which is a ten minute walk, and I’m coming back and I’m literally falling asleep on the sofa and I feel like I’ve run a marathon.” And I was exhausted all the time and things weren’t getting acknowledged to me like my processing was so slow. 

How did you notice when you were feeling better?

I think I started feeling better when, because I’m a very, I’m a person that loves multi-tasking so I’ll be doing something and doing something else and I wasn’t able to do that and I think, when I slowly started to go for longer walks and coming home and not feeling like I need to go sleep. I weaned off my medication. I wasn’t really getting headaches all the time. I think I then started to realise, you know, I’m starting to get better, you know. I was starting to eat, so I stopped eating certain foods because I just didn’t feel like eating. My appetite went so, then I started eating like proper meals and I was able to, you know, eat them without feeling sick afterwards. I was able to go for an hour walk without coming back and feeling like I’m physically drained and exhausted. So I think I slowly, slowly built myself up and then I went back to work and then I think, when I went back to work and I started multitasking and doing things and I started getting back into a routine and I thought, right, you know, I know I’m feeling a lot better now.

So it was gradual, things just got easier.

It was a very slow gradual thing. I think it took me at least three months to get back to my normal self.

 

 

Tom’s symptoms had been “life-changing”. Physical or mental exercise triggered his fatigue. It affected his memory and his ability to concentrate.

Tom’s symptoms had been “life-changing”. Physical or mental exercise triggered his fatigue. It affected his memory and his ability to concentrate.

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So, for me, it’s been really quite life-changing. And in terms of the, the symptoms, so what does it feel like? So, I’ll wake up in the morning, half past seven, eight o’clock, and I’ll almost always feel fine. Then, if I do anything that involves mental exercise, or physical exercise, and actually, mental exercise tends to trigger it more quickly, then tiredness will kick in. And in a normal working day, because my work, my job does involve a lot of mental exercise. I’ll get to about noon, and I'll start to struggle, I’ll start to struggle quite badly. and if I can continue past that point of struggling and keep going, I’ll get worse. Which then has a knock-on impact, not only for the rest of that day, but for subsequent days. And, when I feel tired, it’s weariness, it is fatigue, it’s not just I'm, I'm feeling a little bit sleepy just now. But what’s much worse is the way it just completely destroys my ability to concentrate. 

 
Many people, like Tom, 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’.
 
 

Ben describes what having ‘brain fog’ is like for him.

Ben describes what having ‘brain fog’ is like for him.

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The fatigue is very, very linked to what is known as brain fog. I often end up calling it brain frog, because it’s brain fog.

As soon as it is more than one thing I’m doing, all the plates just drop. It’s not like I can spin two plates. So, if I’m in a coffee shop and somebody asks me something and then somebody behind says to the person, oh, no, get me a latte or get me a cappuccino, I can literally go, like, why am, why am I with you again, what am I here for? So, it’s that kind of, it’s the, the brain, linking to that brain fog, can be really, really impact on my. Often I’m not somebody that usually has to think about what they were going to say. I am finding myself have to really plan, and this comes back to your point about planning. I have to plan the conversation out to think, okay, what, what are the options they’re going to ask me? Do I have, maybe they’re written down so I know what the question’s going to be, and it’s that kind of, if somebody says to me, okay, I’m ordering a coffee, can I have a latte, please? Or what syrup do you want? That would throw me entirely, and it’s, that’s not, that’s not me at all. So, I’m, yeah, that’s still there, kind of everything, physically and mentally, is a little bit harder than it needs to be.

And that’s, yeah, that’s something that I think, I feel like I’ve improved over the last month considerably with probably two things that I’ve been doing which we can go into. But certainly when I’m, if I have a relapse or if it’s just come on in those early stages, that was, that was the biggest thing because it has such a psychological impact on you as well in terms of its, I think that to make it really simple, it makes you feel stupid, it makes you feel almost kind of ga-ga, like you’ve gone mad, that you can’t just ask for something, like the, the brain fog and the brain frog thing is a really good example. Like the words that, I know fog is very different from a frog but my, my brain doesn’t know. I think that’s one of the [inaudible] into the brain fog and the [inaudible] it’s kind of an autopilot failure, that’s the easiest way that I can, I can explain it. I can go into the kitchen knowing I’m going to do something and reach into the cabinet to grab the item that I need, and like it happened the other day, I loaded the dishwasher, was ready to put the dishwasher on, and the dishwasher tab that you put in the dishwasher and my [inaudible]. I opened the fridge, to look in the fridge for the, the dishwasher tablets. I know they live in the cabinet because I put them in the cabinet but no, I was in the fridge looking for it, and that’s, that’s happened a few times with kind of you’re doing something by autopilot, and it just goes wrong [laughs].

There was a time when my partner found a bowl that had meant to go in the dishwasher had been put in the fridge. It’s that level of kind of you know you wouldn’t do it if you were thinking about it, but you don’t have that ability to stop yourself from doing it because you’re not thinking about doing it So that’s, that’s where it’s really kind of impacting on kind of memory, is the other side of it, that I can be told something in one room and then I literally go into the other room, and I’m like what was the answer to that, or I would say the opposite.

 
In other sections people talk about how their exhaustion, brain fog and other symptoms affected their lives (see ‘Living with and managing long Covid symptoms’ and ‘Impacts on other areas of life’). They also talk about trying to find help, information and support. Sometimes this was through health care professionals, like their GP (See ‘Seeking help from health professionals’). 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 (See ‘Sources of information and support’). 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.
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