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Original poster

Has anybody had or still got long Covid

63 replies

Yesnoormaybe · 27/08/2022 11:52

Just been diagnosed with long covid. Does anybody have any idea on how long it lasts. How did you cope with it. Just feeling so fed up with feeling ill. TIA

OP posts:
Caroffee · 27/08/2022 22:02

I'm starting to think I've got it. First tested positive for Covid eight weeks ago. Worked through it (from home) but did nothing else for three weeks as no energy. Then convinced myself I was over it and was bored so I did stuff (i.e. went away for weekend), pushed myself too hard and ended up with mild pneumonia. Now I am running on a limited battery charge. I work, help my disabled sister and do some things at weekends but I can only do all of these things for a few hours then I'm running on empty. Spend many hours in bed sleeping. I even took a day's annual leave on Friday just to sleep all day. I'm giving it another month and if there's no improvement, I will ask for a GP appointment. It sucks.

Sodie · 27/08/2022 22:07

My daughter (12) has it. Covid almost killed her, she didn't eat or walk. Ended up in intensive care. She's been left using a wheelchair fulltime, has ME sleeps 17 hours a night and has severe mental health needs. She had two weeks in year 7 last September before she caught covid. Now she will probably never return to mainstream and needs to attend a specialist unit. Honestly don't think people realise how covid can ruin lives long after they have had the virus.

UpToMyElbowsInDiapers · 27/08/2022 22:09

Sodie · 27/08/2022 22:07

My daughter (12) has it. Covid almost killed her, she didn't eat or walk. Ended up in intensive care. She's been left using a wheelchair fulltime, has ME sleeps 17 hours a night and has severe mental health needs. She had two weeks in year 7 last September before she caught covid. Now she will probably never return to mainstream and needs to attend a specialist unit. Honestly don't think people realise how covid can ruin lives long after they have had the virus.

I’m so terribly sorry to hear that. What a nightmare. I really hope that things improve with time.

lightand · 27/08/2022 22:10

Had it right at the beginning.
Took 9 months to recover.

lightand · 27/08/2022 22:11

There used to be a long covid thread running back in 2020 and for some time in 2021.
Might still be running. I dotnt know. Havent revisted in a long while.

chillipenguin · 27/08/2022 22:12

Yes. Took about 5 months to slowly recover (and I think I only had it mildly) Then I got covid again so I'm building myself back up again.

lightand · 27/08/2022 22:13

Sodie · 27/08/2022 22:07

My daughter (12) has it. Covid almost killed her, she didn't eat or walk. Ended up in intensive care. She's been left using a wheelchair fulltime, has ME sleeps 17 hours a night and has severe mental health needs. She had two weeks in year 7 last September before she caught covid. Now she will probably never return to mainstream and needs to attend a specialist unit. Honestly don't think people realise how covid can ruin lives long after they have had the virus.

How dreadful

At it's worst, I used to sleep 17 hours.

Mossstitch · 27/08/2022 22:24

I got it March 2020, almost don't like to say this, as don't know whether depressing or hopeful, but taken me two years to feel 99% normal. I did however get large viral dose as NHS treating someone with it before PPE was in use. There were times that I thought I would never recover so don't give up hope💐

Caroffee · 27/08/2022 22:34

Sodie · 27/08/2022 22:07

My daughter (12) has it. Covid almost killed her, she didn't eat or walk. Ended up in intensive care. She's been left using a wheelchair fulltime, has ME sleeps 17 hours a night and has severe mental health needs. She had two weeks in year 7 last September before she caught covid. Now she will probably never return to mainstream and needs to attend a specialist unit. Honestly don't think people realise how covid can ruin lives long after they have had the virus.

I'm so sorry to hear this. I do hope things improve for your daughter. She is so young that there has to be hope of an imptovement.

I now feel guilty for saying that I might have LC as I am nowhere near this bad. I just sleep a lot and have no energy. I don't really know what the definition of LC is. Obviously I am not in the same position as your daughter nor Derek Draper.

Sodie · 27/08/2022 22:59

@Caroffee don't feel bad. Everyone is justified to find it awful. My daughter does have it in the extreme, but covid didn't affect her chest. It caused a neurological reaction. She couldn't move her legs, she couldn't eat. She hasn't long learnt how to walk. She has awful ptsd. I had a thread under a different user name when she first got unwell before she was admitted into hospital.

Madhairday · 27/08/2022 23:10

I'm so sorry to hear about your DD @Sodie . Poor girl. As you say people don't realise what Covid can do and can be very blase, especially about young people.

OP I had covid 8 weeks ago and I am not better. I'm having a load of brain fog and weakness but it varies day to day. Today was a good day but I've had those before and got hopeful only to have 2 or 3 bad ones in a row. I've been using a wheelchair since I got it as my legs won't work well. It's just grim. I'm so sorry to hear you have it too.

User287264 · 28/08/2022 11:35

Me. I had covid in May. I have whats called Post Exercise (Exertion?) Malaise or PEM. If I do too much I feel dreadful. Light headed, faint, dizzy, tingly feet and fingers.
Problem is I never know what will be too much. Right now too much could be walking to the corner shop for milk or climbing the stairs 4 times in a day.
It's weird because if I'm just sitting down doing nothing I feel fine. But I know I'll feel rotten if I do anything.
I'm fed up too op, sorry this has happened to you too.

Original poster
Yesnoormaybe · 28/08/2022 11:49

Caroffee · 27/08/2022 22:34

I'm so sorry to hear this. I do hope things improve for your daughter. She is so young that there has to be hope of an imptovement.

I now feel guilty for saying that I might have LC as I am nowhere near this bad. I just sleep a lot and have no energy. I don't really know what the definition of LC is. Obviously I am not in the same position as your daughter nor Derek Draper.

Show quote history

So sorry this has had such a dreadful effect on your daughter. I really hope dd will recover from this. Wishing you both well ❤xx

OP posts:
stayathomegardener · 28/08/2022 14:25

Sodie · 27/08/2022 22:07

My daughter (12) has it. Covid almost killed her, she didn't eat or walk. Ended up in intensive care. She's been left using a wheelchair fulltime, has ME sleeps 17 hours a night and has severe mental health needs. She had two weeks in year 7 last September before she caught covid. Now she will probably never return to mainstream and needs to attend a specialist unit. Honestly don't think people realise how covid can ruin lives long after they have had the virus.

@Sodie goodness you poor thing, nothing worse than watching your child's life seemingly change overnight.

I wanted to offer you my DD's experience post glandular fever at 13 when she developed ME
Basically I see long covid as ME with additional lung involvement. I also had ME from 2003-2017 from a flu vaccine and then long covid. Sigh.

My DDs symptoms were all encompassing, there will be things I've forgotten from this list.

Mitochondrial function of 30% so in bed permanently.

Chronic migraines so reading or study limited to 20 minutes maximum.

Heart was struggling to work with such low energy so Angina.

Allergic to sunlight, gluten, dairy and all toiletries.

Fibromyalgia
Lactic acid build up from the neck down.
Neurological symptoms.
IBS
Automatic nervous system dysfunction.
Anxiety.
Caught every infection going, viral, fungal and bacterial.
Hair fell out.

On a positive note I would say it took 4 years with lots of support to start recovering and 10 years later she's 80% recovered so please don't feel your Dd is without hope.

Jules912 · 29/08/2022 14:49

User287264 · 28/08/2022 11:35

Me. I had covid in May. I have whats called Post Exercise (Exertion?) Malaise or PEM. If I do too much I feel dreadful. Light headed, faint, dizzy, tingly feet and fingers.
Problem is I never know what will be too much. Right now too much could be walking to the corner shop for milk or climbing the stairs 4 times in a day.
It's weird because if I'm just sitting down doing nothing I feel fine. But I know I'll feel rotten if I do anything.
I'm fed up too op, sorry this has happened to you too.

This sounds like mine, didn't know it had a name. It does seem to slowly be getting better, I can usually manage a fair bit of walking so long as I do it slowly, but it is cumulative so need to check I don't have two busy days in a row.

Porcupineintherough · 02/09/2022 11:07

I first had covid March 2020 and was diagnosed with long covid as soon as it became a thing. It's taken 2.5 years to reach a 95% recovery which is as good as I think it will get. Luckily subsequent covid infections haven't made things worse, I do get the occasional relapse.

Im cautious about equating long covid and ME tbh. Graded exercise therapy made a huge difference to me and quite a lot of people with long covid but apparently it's a huge no-no for those with ME.

Underroad · 02/09/2022 23:21

I’m 2.5 years on and rather than getting better, I have recently got worse. It’s miserable. I’m just existing.

BG2015 · 03/09/2022 12:26

I had covid the first week of April 2022 after just finishing chemo for breast cancer. Four weeks later and I was struggling with breathlessness on exertion and a constant cough with mucous at the back of my throat continuously. I'm still struggling with these same symptoms now.

I'm also asthmatic so my GP has tweaked my inhaler medication. I was referred to the long covid clinic which was a telephone appointment. The nurse asked me loads of questions about what I was experiencing and I realised my voice has also changed and I often choke when eating or drinking - I didn't know this was a long covid symptom but it apparently affects a lot of people.

I've had a nasal endoscopy to check my nose/throat hasn't been damaged and all is fine. I'm being prescribed a nasal spray and the dr said taking a daily antihistamine will help which I'm doing already.

I'm also waiting for an appointment for speech and language where I'm hoping they are going to help with my breathing techniques to stop the breathlessness and coughing.

I'm 53 and enjoy walking and cardio exercises - all of which I can't do at the moment. I'm managing weights at the gym but the cross trainer or running on the treadmill leaves me gasping.

After 9 months of doing very little throughout chemo I'm finding this EXTREMELY frustrating. Every morning I wake up and hope it's gone.

User287264 · 03/09/2022 13:12

I'm managing weights at the gym but the cross trainer or running on the treadmill leaves me gasping

I'm in the middle of a mega-relapse right now but before that this was me too. Managing reasonably big weights slowly but nothing cardio. Weird, isn't it

Underroad · 03/09/2022 17:27

User287264 · 03/09/2022 13:12

I'm managing weights at the gym but the cross trainer or running on the treadmill leaves me gasping

I'm in the middle of a mega-relapse right now but before that this was me too. Managing reasonably big weights slowly but nothing cardio. Weird, isn't it

I have the opposite (although can’t do any exercise at all at the moment as having such a bad flare. This refers to my usual long covid ability, not when I’m at my worst): I can usually manage cardio but even light weights absolutely floor me and leave me feeling dreadful for a full week.

DeborahVance · 03/09/2022 20:57

I had covid about seven weeks ago and am still short of breath and easily exhausted. At what stage is this actually long covid and is there anything a GP can do about it?

Porcupineintherough · 03/09/2022 21:56

@DeborahVance after 12 weeks it's long covid. And unlikely the gp can do anything except refer you to the long covid clinic. Whether they can/will do anything depends on your symptoms.

SandieCollins · 03/09/2022 22:02

I got covid in March 2020 and am still at about 25% of my previous functioning. They’re starting to say it might be a neurological condition like MS instead of Long Covid. It’s affected my chest / breathing as well as neurological functioning.

The only way I’ve found to deal with it is to massively readjust my daily routines and activity levels. I went from running daily to being able to walk for about twenty minutes.

Long covid clinic was a waste of time.

Izzy24 · 03/09/2022 22:04

I had Covid Christmas 2020 and still unwell. No stamina, doing a fraction of what I could do precovid. Lots of joint aches and pains . and general inflammation. Recently referred to a long covid clinic/research thing so maybe something helpful will come of that.

@Sodie I’m so sorry to hear about your daughter. That must be so hard for all of you.

stayathomegardener · 04/09/2022 15:03

SandieCollins · 03/09/2022 22:02

I got covid in March 2020 and am still at about 25% of my previous functioning. They’re starting to say it might be a neurological condition like MS instead of Long Covid. It’s affected my chest / breathing as well as neurological functioning.

The only way I’ve found to deal with it is to massively readjust my daily routines and activity levels. I went from running daily to being able to walk for about twenty minutes.

Long covid clinic was a waste of time.

I have a neurological appointment mid October to rule anything major out.

On a positive note the flu vaccine from 2003 gave me terrible neurological symptoms, took years to resolve but they did heal.