Long Covid

[Carvaged]

I've been continually pushed to get a free flu jab every year for the last decade, despite never having had the flu before (that I'm aware of), all because I had myocarditis once.

Funny how experiences differ so radically depending on which particular tick-box a person gets given by the all-knowing computer.

 

[ska invita]

Feeling worse than ive felt in a good while - back in bed ffs
going to take some steroids tomorrow, ive had them spare there for a while
FFS GET ON WITH IT!!! So annoying all this

 

[Brainaddict]

Sorry to hear that - it's very frustrating when you take a setback. I've also regressed a bit, back to having to take a nap after lunch most days. I'm still struggling to do less as well. Life rolls along and its very difficult to deliberately step out of it and watch it pass you by. Of course that's probably not how I should think about it, and the fact that I do is part of the problem. I should think more in terms of adjusting to a different pace of life. But also when it comes down to it, I hate being in the house all day. Sigh.

 

[ska invita]

Anyway, they did a few extra checks to see if my lungs were working okay, which I haven't heard the results from.

What type of tests did they do?
I want to ask for similiar - helps to know what to ask for
I feel like something is fundamentally wrong with mine

 

[Brainaddict]

What type of tests did they do?
I want to ask for similiar - helps to know what to ask for
I feel like something is fundamentally wrong with mine

They took a new x-ray, though mostly because they couldn't get the x-ray from another hospital up on their system They took a few other blood tests but I don't know what. Unfortunately the day I went to the long covid clinic was a bad day for me personally and I didn't ask the questions I might normally have asked as my mind was elsewhere. I also assumed I would get the test results within a week or so, but it seems I won't find out anything until February.

 

[elbows]

Long covid in snooker:

Williams falls asleep during defeat

Three-time world champion Mark Williams falls asleep in his chair during a surprise second-round defeat by Anthony Hamilton in the UK Championship.

www.bbc.co.uk

"It was a bit embarrassing but I was just shattered.

"I need to be playing in the mornings really, or afternoons. The more the day goes on the more tired I get.

"It's disappointing but there's a lot worse people that have had Covid than I've had it, so I'm one of the lucky ones really.

"It's definitely better than what it was a couple of weeks ago so I've just got to keep going, but if I play night matches I'm going to really struggle."

 

[Carvaged]

They're going to give me some brain scans to see what's up. Probably lost a bit of the hippocampus permanently. I don't feel like what I've got is ongoing inflammation as it seems stable but who knows.

 

[Dogsauce]

I reckon my eyesight is considerably worse post-Covid, though it seems to come and go. Everything also seems a bit darker, rooms I could read in OK seem too dim for it now. Not sure how that would work,

 

[kabbes]

They're going to give me some brain scans to see what's up. Probably lost a bit of the hippocampus permanently. I don't feel like what I've got is ongoing inflammation as it seems stable but who knows.

Why the hippocampus? That’s implicated in memory encoding and retrieval, if my own memory serves. Are those systems particularly affected, do you think?

 

[Carvaged]

Why the hippocampus? That’s implicated in memory encoding and retrieval, if my own memory serves. Are those systems particularly affected, do you think?

Yeah Covid caused quite a bit of brain damage. I have very poor episodic memory, anterograde amnesia and anomic aphasia. Hoped things would improve over the last 18 months but no change (maybe even slightly worse, hard to tell when you can't remember stuff lol...)

 

[Riklet]

Yeah Covid caused quite a bit of brain damage. I have very poor episodic memory, anterograde amnesia and anomic aphasia. Hoped things would improve over the last 18 months but no change (maybe even slightly worse, hard to tell when you can't remember stuff lol...)

Sorry to hear that things are tough. But youre not in a position to be able to determine exactly what has happened... much less which parts of the brain were affected. We have no idea if your covid caused brain damage or not... they cant even agree over whether it can directly affect the brain. Also, as many people have commented before on this thread - recovery isn't always linear and logical. I suffered from bad memory fog and all sorts of other issues for over a year which are much better now. The major improvements all happened in the past 6 months too. 18 months isnt really that long in terms of a journey towards recovery either.

I find the endless self diagnosing of long covid stuff quite frustrating. You can see why doctors are often keen to give out anti depressants to people who are actively focusing on their health and worrying about it all day... couple of months of being numbed and not noticing so much and using my energy elsewhere definitely helped me a lot!

 

[Carvaged]

Sorry to hear that things are tough. But youre not in a position to be able to determine exactly what has happened... we have no idea if covid caused brain damage or not. Also, as many people have commented before on this thread - recovery isn't always linear and logical. I suffered from bad memory fog and all sorts of other issues for over a year which are much better now. The major improvements all happened in the past 6 months too. 18 months isnt really that long in terms of a journey towards recovery either.

I find the endless self diagnosing of long covid stuff quite frustrating. You can see why doctors are often keen to give out anti depressants to people who are actively focusing on their health and worrying about it all day... couple of months of being numbed and not noticing so much and using my energy elsewhere definitely helped me a lot!

Um, what's with your somewhat obnoxious attitude? You know absolutely nothing about me whatsoever. This is what I was told following several consultations at the Long Covid clinic. Take it up with them if you have a problem, but preferably keep your axes to grind to yourself.

 

[Brainaddict]

I'm interested that you even got that stuff measured Carvaged. My memory was very bad before covid and is now extremely bad, but the Kings long covid clinic didn't test for anything except lung function and didn't seem to have the ability to test for anything else.

 

[Riklet]

Um, what's with your somewhat obnoxious attitude? You know absolutely nothing about me whatsoever. This is what I was told following several consultations at the Long Covid clinic. Take it up with them if you have a problem, but preferably keep your axes to grind to yourself.

Im sorry it's sore for you but I stand by what I said. You havent even had a brain scan yet! There's much more chance that you'll make a full recovery than some whole chunk of your brain is permanently damaged. Just because youre suffering with long covid dont expect to be able to make such wild claims on this thread without it being challenged.

As for long covid clinics... they seem to be run mostly by psychologists and physiotherapists. And fair enough.. you can see why. Some practical tips and relief is surely more useful than dragging ill people around for endless scans and diagnosing them with maybe possibly conditions which sound big and scary and plenty of other medical professionals might not even agree on.

I stand by the fact that "what is actually wrong with me" is not the right question or mission when you have a chronic illness. You wouldnt expect a cancer patient to learn about the complexities of cancer and its treatment as part of their recovery (granted the problem there is probably a lot clearer than with long covid).

 

[Carvaged]

Im sorry it's sore for you but I stand by what I said. You havent even had a brain scan yet! There's much more chance that you'll make a full recovery than some whole chunk of your brain is permanently damaged. Just because youre suffering with long covid dont expect to be able to make such wild claims on this thread without it being challenged.

As for long covid clinics... they seem to be run mostly by psychologists and physiotherapists. And fair enough.. you can see why. Some practical tips and relief is surely more useful than dragging ill people around for endless scans and diagnosing them with maybe possibly conditions which sound big and scary.

So you think poor episodic memory, anterograde amnesia and anomic aphasia require a brain scan to recognize or diagnose?

 

[Carvaged]

I'm interested that you even got that stuff measured Carvaged. My memory was very bad before covid and is now extremely bad, but the Kings long covid clinic didn't test for anything except lung function and didn't seem to have the ability to test for anything else.

Yeah mine went through the lung clinic, but they seem connected up to most other clinics. Have you had any referrals elsewhere?

 

[Riklet]

So you think poor episodic memory, anterograde amnesia and anomic aphasia require a brain scan to recognize or diagnose?

Id imagine almost everyone on this thread has suffered from one or more of those at least at one point. I dont think it helps you to see the bigger picture though diagnosing or being diagnosed in how your symptoms manifest. These things are not necessarily conditions in themselves or permanent conditions.

Have you had good support on a more practical level from the long covid clinic in terms of adapting to your current situation etc?

In me news - Im still doing the low histamine diet moderatey strictly and have found that helpful. I asked my doctor about changing from sertraline to fluvoxamine based on its anecdotal positive results for long covid patients but she wasnt keen cos of lack of data and also it's 9 times more expensive i did a walk in the countryside yesterday and got cold so im tired out today and my tinitus is bad. But things are v positive anyway... still working part time in the kitchen job (just been paid!) as well as doing my laptop repairs so less financially stressed than before.

 

[Carvaged]

Id imagine almost everyone on this thread has suffered from one or more of those at least at one point. I dont think it helps you to see the bigger picture though diagnosing or being diagnosed in how your symptoms manifest. These things are not necessarily conditions in themselves or permanent conditions.

Have you had good support on a more practical level from the long covid clinic in terms of adapting to your current situation etc?

Im still doing the low histamine diet moderatey strictly and have found that helpful. I asked my doctor about changing from sertraline to fluvoxamine based on its anecdotal positive results for long covid patients but she wasnt keen cos of lack of data and also it's 9 times more expensive

So having put words in my mouth and made some rather facile assumptions about me, now you think to ask questions and feign to care?

I'm sorry you appear to lack much empathy and feel the need to disbelieve my situation, but I'm not going to pretend I sense much value in talking with you on this. All I see in your comments, edits, and attitude here is a person who has an axe to grind and seems to be projecting that on to others.

 

[Riklet]

So having put words in my mouth and made some rather facile assumptions about me, now you think to ask questions and feign to care?

I'm sorry you appear to lack much empathy and feel the need to disbelieve my situation, but I'm not going to pretend I sense much value in talking with you on this. All I see in your comments, edits, and attitude here is a person who has an axe to grind and seems to be projecting that on to others.

ok then maybe best we both just step back as this clearly isn't helping on this important thread.

 

[Brainaddict]

Yeah mine went through the lung clinic, but they seem connected up to most other clinics. Have you had any referrals elsewhere?

Nope, apart from telling me to self-refer for CBT. But they did their assessment and said I didn't meet the threshold for anxiety or depression and therefore wouldn't benefit from CBT. Nothing else.

 

[Carvaged]

Nope, apart from telling me to self-refer for CBT. But they did their assessment and said I didn't meet the threshold for anxiety or depression and therefore wouldn't benefit from CBT. Nothing else.

Oh that's not good I know I've been a bit critical about the lung myopia of most long covid clinics, but the one I'm attached to (C&W) has at least at its core the idea an holistic approach is best. In my case, the brain/neurological deficits are quite obvious and profound, so I suppose it wasn't difficult for them to draw conclusions and forward me for confirmatory tests. But even so, the initial consultations took 3+ hours and I saw a lot of people, had a whole bunch of memory tests, blood tests etc, and ended up with a fair number of referrals to other specialist teams. The proof of the pudding is whether those referrals actually come through and lead to anything useful, but we'll see...

 

[ska invita]

I reckon my eyesight is considerably worse post-Covid, though it seems to come and go. Everything also seems a bit darker, rooms I could read in OK seem too dim for it now. Not sure how that would work,

Really finding this, from perfect eyesight to squinting to read text, accelerated this last month .

 

[ska invita]

One year after COVID-19 and fighting for my vision

Struggling with symptoms including light sensitivity, pain and poor depth perception, Mark didn’t know what was wrong with his eyes. But his doctor of optometry did: the lingering effects of COVID-19. Together, they were able to work through a treatment plan to help Mark on his road to recovery.

www.aoa.org

 

[ska invita]

starting to panic a bit

https://www.optimax.co.uk/blog/long-covid-affect-eyesight/

The short and long term impact of COVID-19 on your eyes

COVID-19 is known to cause a fever, shortness of breath, and the loss of smell and taste. COVID can also have an impact on your vision and eye health.

www.ultralase.com

there's loads of links out there
not sure what to do about it

 

[Edie]

Am currently sharing office space with the Long Covid team (and bizarrely the Police Custody team) along with CAMHS crisis, comm paeds and library staff. It’s an interesting mix!

 

[elbows]

Am currently sharing office space with the Long Covid team (and bizarrely the Police Custody team) along with CAMHS crisis, comm paeds and library staff. It’s an interesting mix!

I suppose the long covid arm of the law can reach the high bookshelves without too much stress.

 

[wtfftw]

starting to panic a bit

https://www.optimax.co.uk/blog/long-covid-affect-eyesight/

The short and long term impact of COVID-19 on your eyes

COVID-19 is known to cause a fever, shortness of breath, and the loss of smell and taste. COVID can also have an impact on your vision and eye health.

www.ultralase.com

there's loads of links out there
not sure what to do about it

I feel for you and I would suggest as with any new symptom or anything that gets worsens to go back to your GP.

It's well known amongst people with ME that our eyesight is affected. But it does fluctuate along with all the other symptoms. I've always put it down to fatigue.

 

[ska invita]

I feel for you and I would suggest as with any new symptom or anything that gets worsens to go back to your GP.

It's well known amongst people with ME that our eyesight is affected. But it does fluctuate along with all the other symptoms. I've always put it down to fatigue.

Thanks that's reassuring... One of the articles I read suggests it's down to lack of oxygen and that's been an issue the last month (in fact having lung x-ray next week). I'm going to blitz my breathing exercises in free time and Xmas and hope it has a positive effect.

My hair started turning grey earlier in the year but that has stopped and reversed even ... After some hair cuts no grey hair at all now. I remain hopeful these symptoms can be temporary, or if this goes on then I guess fluctuating is better than permanent.

 

[Riklet]

yeah i had a lot of weird vision and eye symptoms which are lots better now. def related with fatigue and dips IMO.

one thing i still have is alot of twitching in my eyes and sometimes regular soreness or dryness. as well as difficulty keeping them closed unless im really tired urghh.

 

[Brainaddict]

Curses. I got covid again. Mild atm but obviously I'm concerned about the long term effects. On the plus side, I got a Moderna booster shot on Friday, which is no good for stopping me getting it obviously but they are now saying that having a jab close to covid lowers your chances of getting long covid. All a bit unpredictable when I already have long covid, but nothing I can do now, it's just a waiting game.