The long covid sink hole

[Cortrach]

My brother has long covid. He tells me about it repeatedly, in great detail. About consultant appointments he has arranged for himself up and down the country, about how he is getting "support" from the "long covid community" which is as far as I can tell not a community at all but rather a collection of disparate individuals staring at the internet. He has been having long covid investigations for close to six years now. In all that time, no one has found any physical cause for his many varied symptoms as identified by him. Previous to him developing long covid he had atypical asthma for several years. Atypical asthma seems to me to be similar to long covid in that having it entailed him visiting lots of specialists who couldn't find anything wrong with him other than breathing in an anxious way.

I feel like I've lost him, and actually I need him because our parents are (genuinely) unwell with age related problems. He won't talk to me on the phone about it because he says it's too tiring for his long covid. I can't question the long covid because apparently he is surrounded by people who don't believe him and they are toxic.

I guess I just write him off, but I feel sad. He's my brother. And he's only 50! It's a waste of a life.

They are trauma response. But they set up a neurological problwm. Remember in LC the nervous system gets dysregulated.

The brain thinks there’s a problem. I think there are some neurological markers now?

Covid is still here and people are being regularly reinfected. Unfortunately every reinfection raises the risk of complications and long covid. Some people on here are going to get a very nasty shock one day if they become ill and the ignorant cruelty they showed to others is turned on them.

Exactly. And I think the way in which some people are being so dismissive of Long Covid is just as offensive as it would be if I was to say that autism doesn’t exist. Just because I haven’t had any direct experience of autism doesn’t mean that it isn’t very very real and hard to manage to those people it impacts.

The deregulation of the nervous system puts the body into fight or flight mode. The brain doesn’t understand the difference between a real threat and a dysregulated threat and freezes.

Why do you think meditation is a cornerstone of LC recovery?. It soothes the nervous system.

Because... and I have witnessed this... its all they have.
Its important- all those appointments and people being concerned... its a need in SOME people - a MH issue.

I was too unwell to attend any appointments. That’s not fun.

Yes, I agree. A lot of these ‘conditions’ seem to affect very similar types of people. There is a type who seems to relish in being unwell and misunderstood.

YABVVU. Your poor brother. I had LC for over a year in 2020 and was gaslit by everyone including many friends and also doctors who told me it was "anxiety". Just because doctors didnt find anything obvious does not mean he's making it up FFS. I also gained a lot of invaluable support and info from the online communities.

That comes across as quite harsh. But interesting that there is evidence now that a proportion of those with long Covid also have or have had ME or Fibromyalgia. I think someone here even mentioned it was their experience

I was left with a racing heartbeat after a bout of COVID and I started to wonder if I was stuck in fight or flight mode as I noticed I felt anxious about things I would usually take in my stride. It wasn't clear whether I had a physical problem or something else..

The racing heartbeat was very real and physical and one of my friends commented that she noticed me struggling with a walk I would usually easily manage.

Before I went down the route of asking to have my heart checked I visited someone who works with the vagus nerve. The heart rate readouts from walking to my appointment compared with walking home were like night and day and I went completely back to normal after that one session.

It was all very peculiar and I could imagine spending years backwards and forwards to appointments if I hadn't happened on the right modality as soon as I realised whatever was up wasn't fixing itself.

This being true for you doesn’t mean it’s untrue for others. You mustn’t take people’s observations of some lead swingers as being targeted at you. It isn’t, you are genuinely ill. Not everyone who appears to be or claims to be, is.

Indeed.

They affect women mainly. Who have over reactive nervous systems. Tend to affect people with allergies.

Lets home you’re not a menopausal female with hay fever eh?

I bet. Hope you're on the mend?

This is so sad to read. I had long COVID from the March 2020 wave. It was the worst experience and I was very unwell for about 18 months, then slowly improved. I seem totally normal now, but I've never got back to the same level of energy/fitness/stamina.

I've no idea what led me to recover, while others struggle badly for years, because no one studied long covid properly, no one gave a shit and I expect most of my friends, colleagues, doctors probably thought I was making it up.

I don't mention it in real life because of the shitty opinions of others, but my heart goes out to anyone who finds themselves in this situation.

@ArseInTheCoOpWindow I have logged in simply to respond because I could not stomach any more of your posts on this thread! Where on earth have you sourced your information relating to ME/CFS /LC?! All of this stuff about the brain being in “freeze” mode and that the nervous system just needs to be calmed and sufferers have to “want to do it” and things will be fine; you are spouting this as if it is factual information, and not your opinion. It is harmful and just feeds the stigma real sufferers face.

YOU may have sound something that worked for YOUR illness, but if what you are saying is even remotely true, why hasn’t the NHS picked up on this miracle cure?! Because it’s nonsense.

Please at least pre face your posts with “in my experience or in my opinion”; you are posting as if you have found the cause and cure of ME/LC. Meditation is NOT a cornerstone of treatment and to suggest it is, is downright insulting to those of us who have lost everything to such diseases.

No I’m not.

I’ll post how and want.

I’ve had severe CF. Unable to get to bathroom for 2 years. Why would l stigmatise anyone?

Where have l got the info from?

Some from the Chronic Fatigue Clinic
Some from the Long Covid hub OT.
Both of which were NHS referrals

l haven’t just made it up.

I've had Long Covid for 4 years. Luckily I've started recovering in the last year to the point where I'm not crashing with PEM and have returned to work. I still have to be careful and listen to my body. Dysautonomia and breathing pattern disorders are very real and disabling.
I got very little from the medical profession but learned lots from the LC community you are disparaging. There are a lot of medical researchers in these groups who are sharing information about treatment trials.
LC is not one disease and there is no one treatment that will work for everyone. I tried lots of the suggested treatments and found the ones that worked for me. I'm about 75% recovered but don't know if I'll improve further.
The impact of LC on my life has been immense so the OP is being very very unreasonable.

I'm the type of person who is so reluctant to cause a fuss that I nearly died from internal bleeding but was insisting I was fine, it's just a bit of cramping until I nearly collapsed. When I was in labour with my 2nd the midwife asked me why I was there as from looking at me I was obviously just in early labour. I knew I wasn't as I was in agony and insisted that they checked me, when they eventually agreed I was 8cm dilated. My husband says I'm like a cat, I remain calm and composed on the outside even when I'm screaming with pain on the inside. It didn't stop me from getting one of these 'conditions'. Unfortunately they don't discriminate and even people who think they are hard as nails can find themselves exhausted and gasping for breath just doing housework.

@ArseInTheCoOpWindow As I said, you are posting as if you know the cause and cure of ME/CFS. You don’t, nobody does.

CFS Clinics (there’s a difference between CF and CFS too) support people with ME/CFS to manage and live with their illness. CBT is often offered at these clinics NOT as a way to “cure” the ME , but to help the sufferer manage negative cycles of thought around living with their illness. They do NOT explain the cause or cure of ME because nobody knows what that is?!

It is true of ANY illness that there will be ones who are stuck in a negative cycle of thought that hinders recovery . However, to suggest that ME sufferers could get better if they just tried harder to calm their nervous system, is just not ok.

You are telling another poster who is questioning you, as if it were scientific facts that the brain is in a freeze mode and is therefore causing neurological symptoms! It is so far from the hypothesis of actual experts in the field, that I have queried it.

It is harmful misinformation and feeds directly in to the people who believe anyone with such diseases is just not trying hard enough.

Yeah, it’s about finding what works for you.

Some psychological theories suggest that a person who fabricates an illness is getting unmet needs met. What does he gain by having the diagnosis? Does it give him an excuse not to work, or sympathy from those around him? There will be some sort of benefit, whether that’s social, psychological, or financial, etc.

I have M E and Fibromyalgia both have desttoyed my life for over 20 years tests never show anything HOWEVER now the world is trying to figure out long covid i have hope.
Its awful to live with awful as others cant understand awful as people get fed up with you awful as even after 20 years i stll search... people drift away...family struggle to keep patience.
Folk talk endlessley about their jobs, children , holidays or whatever they are doing but get fed up if you talk about what youre doing...i.e. trying to find cure, achieving small things, being fed up to be sidelined and disbelieved by people. People help if youre legs broken but you can just struggle on with little or no help/empathy/sympathy from others. Isolation happens.

A side track but I almost got stuck down a similar online hole recently. I'd been feeling really tired, losing hair, bit breathless etc. Got tests done and I had low vitamin D and borderline low iron. Prescribed both supplements and sent on my way. Obvious cause was that I'd been using suncream more than usual the last year (ironically to try and stay well!) and my periods had been a bit heavier due to peri. All sorted.

But I made the mistake of joining a vitamin deficiency group. Suddenly I was being told the supplements I had been prescribed were way too low. I needed huge increases plus a whole bunch of other things. My results pointed to xyz medical conditions. I needed a bunch more tests and meds. Massive diet changes needed etc. I started looking into it all and reading lots of posts. Over a few weeks I felt increasingly worse and increasingly worried. It was all a medical conspiracy to keep people unwell, deny underlying conditions...

Long story short it made me really anxious and that fed into reading kore posts and more anxiety, but thankfully I caught it early enough and deleted it all. I'm totally fine now.

Support groups can be really helped when they are aimed at helping people get better. But a lot seem to just whip up anxiety and make things worse.

Or maybe they are actually ill and the mechanism hasn't been found yet?

I experienced all the head tilty pseudo psychology nonsense from people like you for 20 years before finally getting a diagnosis of a very real neurological condition.