Long covid - guardian article

[Coffeeinsunshine]

This is one of the best articles I've read for an insight on what long covid can do to your life.

www.theguardian.com/society/article/2024/jun/05/i-could-bench-press-100kg-now-i-cant-walk-lucys-life-with-long-covid

Thank you @AreYouVeryAnti It is really frustrating. I wanted to speak out, but was extremely ill. Did not want my story to be fuel for anti vaxxers and immediately got some very cruel denials from people pushing a very pro vax position, despite having an injury that unfortunately shows on MRI. So did feel very caught in the middle.

I hate to think how many women thought they had heartburn, had palpitations and had shortness of breath or felt weak, but couldn’t access healthcare or didn’t realize the red flags. I learnt of so many cases where women were brushed off with being anxious, etc when they initially sought help, then eventually after getting an MRI myocarditis was found. I also heard of some cases after the early round of Covid, while being treated.

Sorry to all who have long covid or are vaccine injured. There are some who believe neither are real. Mine is from infection, second infection gave me different issues. I seem to be getting worse over time.

I think many want a sensible conversation, but it's hard to wade through the
you just want another lockdown / kids don't get it / it's psychological / only vax injury is real (even if you haven't been vaccinated) / nobody gets ill from the vaccine / we are no longer in a pandemic / can't get it unless you're vulnerable or had a bad infection / viruses are good for you - immunity debt etc etc etc.

It's weird how rare it is to find a good article that just shines a light on what the illness is like to live with, given how many people are affected, which is why I posted that link. I thought it was really well done.

My husband has had LC for over two years. We were becoming resigned to it possibly being a forever thing. He is 70 and in addition to him becoming exhausted after minor activity and needing to stay in bed for 5 days or so, it aged him at least 10 years. Amazingly, he started to make a slow and steady improvement a few months ago and it so much better now that it’s wonderful. He’s not a 100%, a short walk still leaves him tired, but not taking to bed. I feel like I’ve got my husband back. There is hope 😃 The people who brush-off Covid as ‘just like a cold’ really piss me off. It’s such a dangerous disease.

Yes, but the vaccine at least reduces the risk of severe illness at the acute stage.

The article was excellent- so much suffering.
I had long covid too, awful. Months of feeling unwell.

@Crikeyalmighty I the same symptoms as you. Before I was referred to the long covid team I thought I had MS. Good tip about the B12. I’m 2 years on and so much better but still get the vertigo just not as badly.

Was there anything in particular he did to trigger the start of this improvement? Or do you think it was simply a matter of time?

@Durdledore I reviewed the available research findings. There seems to be evidence that the damage from Covid which causes LC is either one or a combination of an autoimmune responses, problems with gut bacteria and/or an excessive histamine response. We couldn’t do much about an autoimmune response, but he took antihistamines for a couple of months with no improvement, then a good quality prebiotic (Bimuno) for a couple of months. Improvement has been steady since then. He still takes it. Clearly,this is anecdotal and we can’t know that caused the improvement.

That's good news.

@Lovemybunnies I honestly was absolutely convinced I had MS - or even a brain tumour- mine came on literally 4 days post Covid but stupidly I had a vaccine about 2,weeks later and it really ramped up-all neuro stuff- constant headaches in back of head most days, pins and needles in feet multiple times a day, weird heady spacey feeling- like I might feint , the odd occasional buzzing in my fingers and kind of a feeling like I had a battery in lower legs that was being switched on - weak wobbly leg, sound and light felt amplified upwards, sore eyes all the time - honestly I thought the end was nigh!! Had loads of bloods and paid to see a top rate neuro here in Bath, she did some checks and told me very unlikely to be MS at 62 as it presents usually at that age as progressive and I would be falling over etc - told me to immediately lose a few stone, go gluten free and daily vit D spray and vit B spray plus half a low dose beta blocker a day for anxiety, Masses of deep breathing from abdomen to calm the nerves , walk a lot in calm surroundings - gradually it all regressed over 8 months - I have no idea why the bit B spray helped as my vit B levels were quite good- but within 2 days of it- the pins and needles thing went away quite rapidly and the gluten free thing seemed to help a lot too - 19 months later I've been left with a few residual things such as sore eyes and a bit of an arthritic neck - and I tire about 11pm - so late nights don't work- but I can live with that at 62! It certainly totally screwed up my nervous system - I don't think the idea it's a respiratory/ breathing kind of issue is always the case- I actually felt better walking around-.

The pandemic is not over, people saying this is a pet peeve of mine as it is misinformation. The World Health Organisation declared the global emergency phase to be over due to pressure from the aviation industry. However the pandemic itself is still ongoing, and it has not been declared "over". Even if the WHO had declared this, which they didn't, the real-life situation would contradict it.

One marker of an epidemic compared to a "regular" endemic virus is being unpredictable. Influenza, for example, is predictable: there is a peak around the same time of the year every year. Covid so far is spreading in multiple waves every few months and they are not seasonal, the emergence of new variants is also quite unpredictable. We are in June and there's a wave going on right now.

Thanks but I have no vaccine injury (I didn't take any) nor do I have long covid.

All the best to you!

Central Europe, long covid is definitely recognised here with similar symptoms and we have similar struggles helping people with it.

The bad thing is that every reinfection increases the risks, so deciding COVID is just another cold now means accepting that more and more people will suffer from the long term condition.

I‘m so sorry to hear these stories x
My Mum was diagnosed with rectal cancer at the start of the pandemic.

She had a stoma fitted, had it reversed, had a large section of her intestines removed.

She’s really vulnerable, has had all her Covid jabs and has never had a bad reaction.
If she’d caught Covid, she was so weak - I think she’d have died. She’s never actually had Covid.
I still don’t know how the hospital managed to basically save her life during Covid, they were totally swamped.

My niece had labyrinthitis shortly after she caught Covid. Really affected her ability to study for a long time.
Another niece was in hospital with a PIMS reaction after COVID.
My friend and her husband were unvaccinated and caught Covid. Only in their late 30’s, both hospitalised. I remember them trying desperately to find someone to look after their child…
And I know through a friend - a policeman that died after catching it through his job leaving his wife and children.
And about 10 other people who lost their life - just listening through friends.
I’m personally really grateful for the vaccine because it’s saved my Mum, means we can live freely now, means we’ve all developed our immunity in a safer and controlled way. Means that the hospitals can cope better.
I couldn’t understand people saying it’s ‘just like flu’. It wasn’t. It was from a different set of viruses. More like SARS - wasn’t it?

@PinkRadiator that is quite remarkable about your mother never having Covid despite her medical vulnerability. She may be one of those millions who can't catch it (probably naturally immune) or she presents as asymptomatic if she has been exposed. I think we all know people like this, who despite so much exposure have not caught it, even with infected people at home sharing intimate spaces. I wonder if there are many studies on this? Especially now we know that the distance recommendations of 6 feet apart etc were not based on scientifically determined. Even the exchange of bodily fluids from one infected person to another have shown not to guarantee passing on the infection. So interesting this natural immunity phenomenon towards Covid. I heard it may have something to do with blood types, but I can't remember where I read that and whether or not it was based on any scientific evidence.

@ReturnoftheMe

She was always really careful - still is now somewhat. Face masks, has food delivered, still quarantines post, washing hands etc. She doesn’t wear a mask now, although she might if going to hospital. Family are the only ones really who visit - and we test if any signs of symptoms.

That's a fantastic article, thanks for sharing @Coffeeinsunshine

It really resonates with me as my case is almost identical to the woman in the article. I've had long Covid for 3 years. I went from superfit and buff to permanently exhausted and hugely overweight. Every day is still a struggle and I can count on one hand the number of days this year when I've felt 'normal'. My cognitive issues were so bad that at one point I thought my brain would never function again and I'd never be able to return to work and do my actual job.

This year I finally managed to return to work (after two previous failed attempts at phased returns) and my brain is at 80% but working is all I have in my tank. The rest of the time I collapse with exhaustion and can't function and/or feel very unwell and just want to sleep. I have no life. The old me is gone. I'm still working out who this new me is but I don't like her much. I miss the old me but I have to face facts that she's gone and probably will never be back. I avoid people I used to be friends with as I don't want them to see what I've become. I am permanently embarrassed as well as permanently exhausted.

Reading that article was the first time in 3 years that I finally didn't feel alone. And like a lazy fat cow with insufficient grit/motivation to sort my life out. So thank you @Coffeeinsunshine !

Thank you for posting - it made me cry because I identified so much with her - I was a fit 50 year old who worked out regularly and had an active life - now I struggle to function except to work - drag myself out of bed - work - go back to bed. I do still try the gym - managed 3 whole classes then slept for 2 days. It's so frustrating.

I have joint pain, brain fog but also a complete lack of get up and go - prior to being ill I was always doing stuff - decorating, doing the garden, seeing friends - now weekends tend to be doing bugger all and trying to recover. I went away this weekend with friends - I'm wiped out now. All they can say is 'rest, take it easy' but I am not that person - I'm bored and frustrated and tired and in pain.

Interesting someone mentioned Autoimmune links - I have a range of AI problems so maybe that's one reason I ended up with it?

I’m so sorry you are struggling so much. None of your issues are your fault. You must know that intellectually, but I know emotionally it can be another story. Have you joined any Long Covid groups (have a look online)? You need reminders that you are one of millions in the situation. Not sure if you read my post above, but my husband is finally recovering (fingers crossed) after more than two-years of LC. We had lost hope that he ever would. I hope this happens for you too. 💐

I had 2 severe vaccine injuries that manifested like LC. As no one made the connection l went for the second one.

Just slightly recovering from 2ns injury and caught Covid. Have had severe long Covid for a year. Can’t do anything or go anywhere. Too weak and exhausted. I try and walk 20 steps round the garden but don’t always manage it. Constant severe headaches., ams no brain at all.

I’ve been ill for 3 years now. I have no life and have lost all my friends. I hate this disease and how no one seems to care about it anymore.

I can’t cook a meal, drive a car, read a book, look at screens for any length of time. I dread hospital appointments. They put me in bed for days, and there’s so many. I often can’t hold conversations due to exhaustion. I’m on full Pip. I have to have a cleaner, someone who sorts laundry and live off ready meals as Dh is on his knees after 3 years.

l retired in 2021 age 57 from teaching. I’ve been ill practically ever since and will be 61 in November. 4 years of it.

I love my gp’s but have stopped contacting them. They just send me for more tests that l’m too ill to go to.

I look at people walking in the streets or running, or on holidays and wonder if they know how lucky they are. I get so jealous. A 10 minute car ride brings out a whole new raft of symptoms every time. Then they don’t go.

I honestly think it’s the disease that steals everything. It makes me extra hungry and l hate the weight gain.

I'm not sure if I had/have long covid. I'm pretty sure I had covid in March 2020 but of course there were no tests then.

I went from being active and fit to getting out of breath easily, heart palpitations and really bad anxiety. It was hard to know whether it was from the illness or just the craziness of the times, including trying to work and homeschool.

Four years later I still have palpitations/tacchycardia and also orthostatic intolerance which is a form of dysautonomia. I'm still struggling with anxiety, constant muscle twitches and fasciculations, inner tremor and also seem to get random allergic reactions to things, and my previously mild hayfever became very very bad. Also pins and needles in feet and my Raynauds got a lot worse too. Oh and burning mouth syndrome but that developed a year ago not in 2020.

I've tested negative for everything I've been tested for, just officially diagnosed with taccycardia and orthosatic intolerance.

I'm still not sure if this is long covid or physical symptoms of anxiety. Beta blockers help me to live more or less a normal life but my body feels completely different to how it did before March 2020.

I had another bout of covid last summer which was quite serious - 2 weeks in bed. But after that recovered quickly and normally.

Interesting to hear about the vit B12 spray, I might try that to see if it helps with the muscle/nerve issues.

Anyone else previously had glandular fever long before COVID?
I had it years ago and was floored for months, recovered and thought nothing more of it.
Three rounds of COVID later, no vaccines involved, and I have rolling bouts of exhaustion. Finally gone to doctors who will do some tests, but am I right in saying there is no actual test?

My body feels completely different too. I don’t recognise it.

Jittery, unable to concentrate, hungry, mood swings, dopey, detached. It’s like a black ghost sliding in and reaching into every single part of you. And when you think it’s done it worse it goes further.

This week for instance l have agonising facial pain. I know now this will just become a normal symptom, when it wasn’t even there 2 weeks ago.

Arseincoopwindow I can't tell what's LC and what's menopause

Part two of this series - a twelve year old boy this time. Thanks all for posting - I need to read through this thread.

www.theguardian.com/society/article/2024/jun/12/childhood-interrupted-12-year-old-tobys-life-with-long-covid