The long covid sink hole

If it's neurological then why can't it be treated successfully?

My cousin has formally diagnosed Long Covid. She has only gone back to work full time in the last year - and she was one of the first to get Covid in 2020. Her oxygen levels never go above 93% due to lung damage. If it drops below 91% she has to go to hospital and go on oxygen. Her hair fell out in handfuls, and is still thin. She was doubly incontinent for well over a year. Her energy levels are only now close to what they were before, but she still has days when she is completely exhausted. She thinks this is as good as it’s going to get.

Crazy how such a horrible thread has actually been so uplifting.

@BlooomUnleashedhow interesting, I have seen great improvements from using hyperbaric oxygen and your DS sounds amazing.

Yes all the people I know with long COVID were highly driven impressive people
The disconnect between what their body will let them do and who they are is huge

@RafaistheKingofClay it doesn't seem to happen to working class builders or joiners, does it?

Andy by your workings, lets say an average of 3 infections per person, allow for some duplications, 20% of the population has Long COVID? C. 14 million people? I call BS.

I think you are confusing neurological and psychological

@RafaistheKingofClayyes and I would also add long covid/me favours certain gene expressions and certainly ME affects type A personalities to a greater degree so OP has a even more stacked against her.

Covid gave me brain damage. And I’m grateful. Not for the damage, but that despite me not being an obvious priority at the leading Covid hospital for my province (and one of leading Covid hospitals in Lombardia) the neurologist shoved me in a CAT scan, rather than just send me home cos my breathing was fine.

Without that scan I would have been shunted into the don’t know what’s wrong with her long covid group. And I’m pretty sure it would have been relegated to “all in her head” (which it was, just … as holes in my brain rather than health anxiety). Knowing me I would have retreated into the online world of long covid, and it would have made everything worse. I’m pretty susceptible to the nocebo effect.

DS had nothing better to do in lockdown, and we live in the rice fields and the Ticino Forest, so he rehabbed me relentlessly. He was determined to get me back on my feet and able to walk in a straight line.

While some people may be experiencing somatic illness, others will have underlying damage that hasn’t been diagnosed. In both cases work on physical recovery with support will probably be less unhelpful than being online rabbit holes, and may help with turning the corner. Somatic illness is just a physically “real” as holes in your brain, in terms of the right treatment being required.

I was ill for a month with a health anxious DH (who says it’s his greatest regret) who decided it was just me being anxious and there was nothing real wrong with me. Even if it had been somatic, I seriously needed help. And those four weeks were intensely lonely and isolating.

I consider myself one of the very, very lucky ones. I got the right test at (almost) the right time and had a supportive rehabber (albeit a bit David Goggins-like in his approach) in DS.

DS had no training, just the internet, time and an emotional investment in getting me back to myself as much as humanly possible. Now we are so long past the pandemic he wouldn’t have the time anymore. And I think I might have been written off by medics, friends & family alike.

I feel for you. Because I don’t think being the family member is much easier than being the one who is debilitated, one way or another. It’s a complicated area, requiring a lot of time and energy to resolve for the better.

Its vascular!!!!!

It’s not pyschological.

Its neurological. It creates symptoms due to changes in the brain. These are not pyschological.

Perhaps I should tell that to the surgeon who will be operating on my ears next month for a problem which the hospital has confirmed was caused by Covid. Or maybe I should get myself some counselling to stop myself falling over when I lose my balance and to stop the horrendous autophony which is impacting significantly on me being able to work effectively. 🙄🙄🙄

No, that’s really not true. There are plenty of studies showing physical abnormalities in people with LC and ME.

Yes, this. Be really, really grateful that you don't know what it's like.

You’ve a 10% chance of getting long covid with every SARS COV2 infection you get. At best a previous infection doesn’t protect you from long COVID. If you aren’t taking any precautions against getting covid I wouldn’t be too smug yet.

It doesn’t really discriminate. It’s quite happy to affect high rate tax payers, low rate tax payers, those that get up at 6.45am, those that don’t get up until midday, athletes and those that do no exercise at all, workers and non-workers. And if you are a woman I really would be careful, because that does seem to be one population it is more prevalent in.

Isn't the latest thinking telling us that long Covid is mostly a psychological disorder, similar to fibromyalgia? Symptoms are real, yes, but the cause is not physical.

Doesn’t she just. Poor brother with family like that.

My alarm went off at 3.45am this morning for the job I do that I pay 45% tax on - I still have post viral syndrome though 🤷‍♀️

I feel fortunate that I can still work but all the other things I enjoy , running, tennis, I can’t do at the moment - it has knocked me for six and it is nearly a year of this. I’m far from a malingerer - which is what you’re implying- and I hate that (along with other symptoms that my GP has prescribed real and not imagined medications for) I am so damn tired.

You sound absolutely horrible.

This is exactly how I was treated when I had ME 20 years ago.

Not to mention that the UK is miles behind on LC because it is still treating it all as some post viral thing and it isn’t really interested.

The problem here OP is you brother has two ‘invisible illnesses’. It is possible he could be faking those but it’s also possible he is genuinely ill and it’s quite difficult to be able to tell which of those it is. Not showing up on tests doesn’t actually rule being ill out.

That sounds awful for you - however OP's DB does not have reduced lung function. He's been investigated, due to breathlessness, and no physiological cause found.
I'm not dismissing Long Covid, or other post viral symptoms.

It is OK to look after yourself you know.

You can't/don't have to be everyone's support system.

I think LC is a real thing.

I also think it is a malingerer’s charter.

Both of those things can be true.

I worked and always have worked as a higher rate tax payer with my "imagined condition"

I just have very little quality of life outside that

Good God - I came across people with this type of ignorant views back in the 1980s when I had ME - I thought the world had moved on in the last 40 years 🙄🙄🙄. All the time I was trying to live with ME for ten years in my 20s and 30s I was still managing to drag myself out of bed at 6 am to work in a high pressured job and I didn’t get a penny in support from the NHS at that time. I got into significant debt to pay for private treatment. I’m now 68, still working half time, and have paid my NI contributions and tax since I was 16, and I find it deeply offensive for you to suggest that you are supporting my ‘imagined’ long covid, which has been diagnosed by one of the country’s leading teaching hospitals. Perhaps if you are ever unfortunate enough to develop a condition like this, you might learn to have some empathy and understanding for people who are really ill and struggling with their symptoms.