Defining Long COVID symptoms
An opportunity to share what ongoing symptoms after COVID-19 feel like in your own words, as part of informing how Long COVID research is designed and carried out by Imperial College London.
[To translate this page into another language, please use the 'Recite' tool at the top of this site]
What to do:
- Simply post a written or visual description below of any ongoing, recurrent or long-term symptom you have experienced after or because of COVID-19, e.g. "X feels like..." where X may be symptoms related to breathing, chest, energy levels, sleep, skin, senses (smell, taste, sight, balance etc), mind etc
- It can be in your own words and/or using a picture or drawing of your choosing/design
- We’re particularly keen to hear about the symptoms you feel aren't well described, or even those that overlap with other health conditions or remain unexplained
- You can 'Like' other posts that you feel perfectly describe something you’ve experienced
- NB. You need to sign-in to VOICE to post a submission directly on this page. If you do not wish to join VOICE, you can submit your thoughts to us via this online form instead. You can then select whether you want us to also post here on your behalf, or just keep for our own insight
How it will help:
- Your input will help us improve the way we design our surveys and inform what we explore in our interviews as part of the REACT-Long COVID study, as well as give us (and others viewing this page) greater insight into what ongoing COVID symptoms actually mean to those affected. More on the 'why' here
- We also hope this challenge will spark a bigger, more collaborative campaign to visualise, understand and define the symptoms and/or effects of COVID-19
Things to note:
- If you wish, you can use an alias username so that you can share your thoughts anonymously
- By contributing to this challenge you agree for your comments or images to being publicly available and may be used by us and others as part of promoting the research or sharing experiences of Long COVID. We will credit content to the username shown
- If you change your mind about this or have any questions, please email: [email protected] or [email protected]
Want to stay informed and involved?
- Please join the REACT: COVID-19 Community Network mailing list to receive news updates and invites to events and involvement opportunities relating to Imperial’s ongoing COVID-19 and Long COVID research, as part of the REACT research programme
until challenge closes
Showing 39 ideas from the community
I had Covid in January 2021 and took about 3 weeks to recover (I was not hospitalized). I have since then been suffering from constant headaches, brain fog (especially if I had a busy ‘brain day’ with meetings requiring focus and attention), numb legs (above and below knees), back pain, dizziness, sensitive scalp, burning sensation on my upper back (as if I had sunburn), loss of memory or running our of words at the end of the day. i am desperate...
7 months post COVID, the fatigue is my ongoing issue. Even after a good nights sleep, I am never fully rested. By 11am, 2pm latest, I find my focus diminishing and tiredness setting in. Literally find myself nodding off to sleep in front of my screen. People refer to brain fog, it is s perfect description of what it feels like. It's like someone has changed the focus on your brain's lens and nothing is clear anymore.
Long covid for past 3 months and seems to be getting worse. It's as if the immune system is slowly closing down. Fatigue comes more than it goes. Brain fog is awful, be in the middle of a sentence and all of a sudden it turns into an empty box. I had psioratic arthritis and osteoporosis in remission for the past 7 years, brought out again. Terrible pains left shoulder blade travels to shoulder and down arm. No sleep pattern, my life is upsid...
Long covid symptoms have included severe fatigue, continuous headaches, dizziness, varying shortness of breath, loss of smell, difficulty finding words and brain fog. I am no longer the person I used to be. People just say "you look ok" and don't understand what is going on underneath.
The headaches have been pretty continuous for the past 15 months. At the start it was like having the worse hangover every day with headaches so severe that all I wanted to do was lay down and close my eyes. As symptoms improved, the headaches were less severe but still present on a daily basis. Always niggling pain that could easily get worse with too much physical or cognitive activity.
The fatigue is debilitating. You wake up feeling like you've never been to sleep and it's an effort to do anything except lay down. It feels like you're walking around with a tonne of bricks on your back and no amount of rest makes any difference. If you over exert even slightly, you can pay for it with increased fatigue and other symptoms for so longer afterwards.
The fatigue comes and goes. Most days I struggle to wake up, require a long mid-day nap, and sleep poorly. The first few days were the worst i struggled to breathe properly , i lost my sense of taste and smell which meant i was not eating meals at all. As a result of this i lost weight due to a lack of appetite and skipping key meals. I also had a dry sore throat and was in and out of sleep.
The tiredness seems to be a never-ending battle between 'Should I even try this?' to 'Not a chance, bed it is'. I have the insomnia where i can lay in bed for hours without even remotely sleeping. The afternoon 'crash' as I have termed it seems to just be completely random. Are we tired and angry about being tired? Or is the body in such a confused state it doesn't seem to be able to relay what is truly happening?
The fatigue comes and goes. Most days I struggle to wake up, require a long mid-day nap, and sleep poorly. I travel through the day in haze- forgetful of last nights' movie plot or conversations I've just had. I'm thankful for the days I wake up and don't feel like I have a massive hangover. I'm confused. Am I depressed because I'm tired - or tired because I'm depressed?
Post exertional malaise meant that when I tried the early stages of 'couch to 5k' jogging and increased the intensity too quickly, it led to a big crash which increased the level of omnipresent fatigue and took weeks to return to my pre-crash level of recovery.
While the level of fatigue can vary in intensity, it never gives you a break. You always start the day like a phone with a partly charged battery, and have to plan the day's activities accordingly.
Heart palpitations- feels like heart attack when bad, can’t move / use left arm. Deep breathing helps but then you feel dizzy from deep breathing. Wakes you up in the night, feels like heart is hitting rib cage and is going to jump out of your chest. Propananol tablets have slowed down so now long and slow but very hard beats when palpitating apposed to fast, shallow beats before hand.
Fatigue - feels like you wake up with a hangover every day, it’s an exhaustion I’ve never known before that can’t be solved by sleeping 10 hours or having naps in the day. Exhaustion - going on a walk and then slowing down to a snail pace even though you just need to get home to lie down to feel better but you can’t go fast enough to get there. Everything suddenly feels too much and if you could sleep right there you would!
Pain: My body feels as though my joints have been smashed with a sledgehammer. Fatigue: I am out for a walk and suddenly I’m hit by a bus - I know I have to get straight home but it feels as if I will have to crawl there on my hands and knees. Insomnia: I am so tired I can’t wait for bedtime, but at the same time I dread it. I know I will spend the next 6 hours tossing and turning in an agitated tussle some place between awake and sleep
Air hunger can come from nowhere. It feels like your automatic breathing pattern isn't enough, you aren't getting enough oxygen and you have to override it by breathing deeper while trying to keep calm.
A wave of heavy fatigue feels like a sudden hit of extreme exhaustion where whatever you were doing has to be abandoned, breathing feels hard work, sitting up is too much and all you can do is lie flat, close your eyes and wait for it to pass.
Inclined to get migraines & headaches in past. Headache present in first 3 weeks then had a period where no headache or migraine. About month 6 had migraine, worst since 2008. Since then been having regular headaches and earache- approx every 1-3 days. Have had further migraines which again were really bad & triggered lower abdo pain, cramp & diarrhoea, muscle & joint pains and increased fatigue, abnormal skin sensations.
In 2nd week of acute Covid I experienced the following situation- managed some porridge, before finishing it had severe lower abdo cramp, pain & urgency. Continued over a week, unable to eat & exhausted. Since then I have episodes anything from a few weeks to a couple of months apart with same onset- whilst eating or immediately on finishing - severe lower abdo pain, cramp & diarrhoea for 24hrs to a week.
Other symptoms- internal tremors which at times become visible. It possible to distract from the internal tremors to a certain extent but not when they become visible. I also get pins & needles, tingling & numb sensations in different parts of body but in particular face, hands, lower arms, legs & feet. Daily experience muscle cramps in legs, feet, hips, hands & lower back.
Long Covid fatigue for me was an all encompassing tiredness, which pervaded into every muscle, joint and bone. It felt like I couldn’t move. Sleeping didn’t help. Brain fog that often goes along with the fatigue is for me a feeling of being unable to process information amongst other things. My head feels as if it is full of cottonwool. I’m unable to read effectively, miss words/letters when writing, mix up word order & forget what I’m saying.
fatigue feel like the ultimate of exhaustion, I'm used to being tired, I'm used to functionating on very little sleep, but this is different, its more, its overwhelming, it encompasses my entire being, it floods in uncontrollably like a weight on my body. leaving me unable to move, function, or do anything other than surrender into the most unfulfilling sleep. its debilitating, I may have survived, but it has still taken my life.
I find the term brain fog not entirely descriptive, I struggle to recall words and memory's particularly when trying to describe something. I struggle to remember things that have happened, most of my long covid experience has become a blur. I struggle to think my way through problems practically, forward planning and visualisation of tasks is a problem. concentrating is a problem. I cant focus on conversation or the task at hand very easily.
Post exertional malaise also feels like something people underestimate - after a fifteen minute slow walk on flat pavement = I am in bed for nearly three days, despite the actual walk and subsequent afternoon feeling my core symptoms (SOB, high heart rate, fatigue, aches, nausea) only mildly raised. Also - much exertion is actually mental, rather than physical. Reading a book for an hour = the afternoon in bed, sore eyes, headaches, nausea.
Struggling with the term ‘Brain fog’ which seems like a reductive term for serious cognitive impairment - it’s more like a brick wall in my brain cutting off half of what’s in there. I can understand and communicate fine (luckily) but if you ask me to solve a simple problem it’s like the information is behind the wall, and just trying to access it is like taking a hammer to it; completely useless, painful, emotional, exhausting and stressful.
Brain fog: skull has shrunk & is full of cotton wool. Can’t remember words when speaking, can’t spell words, familiar surroundings/people feel strange. Fatigue: body too heavy to hold up & muscles won’t do what you want. PEM: sore throat, burning pain in joints, crushing headache, muscles too stiff/weak to work. SOB: lower rib cage has tight band round so can’t inflate lungs. Palpitations: heart jumps out of chest or into throat All unpredictable...
Since I caught covid in March 2020: - Facial numbness, right nostril, lips, around right eye. - Numb mouth & tongue with problems with swallowing. - Numb fingers & toes, including burning sensations & nerve pain. - Loss of sensation to parts of skin on the body. - Developed Raynauds syndrome - Trigeminal neuralgia - TMJ issues - Hearing loss - Tinnitus - Ear pain & pressure - Extreme joint pain - Fatigue & brain fog - Deteriorati...
Neuropathy Legs filled with tiny, fast moving bubbles. Feet filled with solid ice. Nothing warms them. Legs, feet and body having random jerks of differing strength. Shooting sensations up and down legs. Pins and needles in buttocks. Sensations of bones being chewed. Sensations of bones being burned. Sometimes, all these sensations at the same time!
Brain fog: Being unable to say common words. I can visualise the word but it won't come out my mouth. Forgetting. Forgetting lots of things. Trying to remember causes cognitive fatigue ... it's a frustrating, viscious circle. Try to use a laptop ... too many buttons to distract. Trying to read a paper... too many words, shapes, colours, smells, textures. Trying to shop online for groceries... placing the same order more than once!
I experience debilitating fatigue. It feels like my legs are cardboard tubes filled with cold porridge... I heard Michael Rosen say this and it fitted my experience perfectly. My arms feel so heavy they might fall out my shoulder sockets. Opening a packet of crisps uses as much energy as making a full meal. My head is too heavy for my neck to hold up, so lying down is my only option. Doing too much causes many symptoms to return.
Leg weakness is frustrating, it’s like walking through treacle or attempting to go around the supermarket clutching onto the trolley like you’ve a few too many drinks! Brain fog is like really hard work; trying to get the words out on a telephone call, but you can’t remember the correct word to say, it’s err, erm??? Or unable to read simple words just staring at them for ten minutes trying to break the letters down!
"Brain fog". Most of the time it feels like my brain is stuffed with cotton wool and it is hard to concentrate on more than one thing at once. When I can concentrate, after some time I start to feel I have an object about the size of my fist in the top right-hand quarter of my brain, which expands slowly until I have to stop thinking. I also have memory lapses, I will forget what I did 3 minutes ago, yesterday, last week... I misunderstand thing...
Muscle and joint pain is constant aches that appear and reappear in different places, for me accompanied by strong blue veins. Buzzy or restless legs feels like they are constantly 'on' and tense, with a tingling sensation.
Fatigue for me felt like someone had turned on a tap and all my energy juice had drained right out. I become slower, both in physical and mental capacity. Brain fog is like I'd become a zombie - a blankness or void in my head, difficulty concentrating and performing actions, trouble finding the right words or using a series of words that didn't properly fit together.
A multitude of symptoms that can't be explained by anything else, that have occurred since having the initial covid infection, seems to affect weak areas in your body that you have had issues with in the past - for me these are gut and ears. Symptoms can be anything from mild to severe, able to cope with them daily or ending up in hospital. Each day is different causing health anxiety and stress causing your symptoms to deteriorate as a result
The fatigue, and indeed the brain fog, is a bit like having a vampire permanently attached to my shoulder. One that is asleep, and you're never sure when it will wake up and feed - and when it does it is literally draining. Energy gets sucked out of me by Long Covid Dracula and and then he sleeps again until the next time he is hungry. The brain fog is often preceded by a vice that connects to my skull and begins to squeeze.
Brain fog feels like a gap or blank in my memory. I can try to bring thoughts back but they are usually gone forever!
These symptoms have mostly gone but I felt them for months: Lungs were heavy and full and felt itchy inside. My ribcage was tender and painful to the touch, to lean or lie down on one side. My spine felt as if it were buzzing or vibrating - both at the bottom of my back and at my sternum. When walking my hands became red/white in mottled or patchy way like spam. Soft part of palms and feet were hot, tender and sore.
Ribcage feels tender and painful to the touch and pain flares up when I lift or bend. Brain fog feels like a blank in my memory or thought process. I have to write everything down - even one word notes midway through a sentence. When I exercise my hands are red/white in mottled or patchy way like spam.
Post Covid migraine makes my hearing sensitive & my sight patchy. I see a flash or two of light, I smell smoke or 'dryness' faintly, I have nausea, my tongue tingles and I feel pressure in areas of my face (pinched cheeks, an elastic band around my forehead). Generally I feel oppressed and I want to curl up. I have pain in my neck, jaw, sternum, armpit and head. My arms and legs become weak. I feel exhausted before and afterwards.