Long Covid

[Miss-Shelf]

First off best wishes to everyone having a hard time.
Im looking for some advice....

Two years in i can summarise my position best as what feels like long term lung damage, which in turn can lead to fatigue, palpitations and muscle aches at times.
This is not uncommon, in fact is the most common long term effect it would seem

Heart palpitations, chest pain among the long-lasting side effects of COVID-19, new research confirms

“Before we examined the data, I thought we would find an ample amount of the symptoms to be specifically associated with long COVID, but that wasn’t the case," one researcher said.

cardiovascularbusiness.com

In reading up about people with a fast heart rate (tachycardia) the symptoms include fatigue and dizzyness. I dont think thats me, but there seems to be interplay between breathing, heart beating and fatigue <probably obvious really.

For me I have some periods were I feel genuinely good, particularly in warm summer months. Not having a good spell this year so far though, but not bad enough to stop me from working, definitely wheezy, tight lunged a lot.

So far my GP experience is terrible, basically him denying its anything to do with C19. I have an appointment with a new GP next week. I'm thinking what to try and get from them and considering asking for a referral to a lung specialist - in London thats the Royal Brompton. I feel like if my lungs worked like they used to Id be fine.
I did have a lung xray at one point and they didnt find anything,

Im wondering if anyone has any thoughts about this request, or any other guidance about how to handle the GP

Ask for a lung function test which tests different types of capacities in your lungs. I didnt need one but got referred to it anyway as that's what Croydon offered for a gateway to the long covid clinic(I had heart symptoms I wanted checking instead but that wasn't on the menu )

After a long break I've got the nerve tingling feeling again in my feet, legs and pelvis. Bit irritating

 

[Oula]

My whole body ache and joint pain came back after a particularly bad nights sleep co-incidided with my period starting this week.

 

[Brainaddict]

First off be

Im wondering if anyone has any thoughts about this request, or any other guidance about how to handle the GP

Sorry to hear you've had a shit GP, I've had to ask not to see one of the GPs at my surgery but the others are okay. Just to say, I feel like my lungs are screwed too, in that if I get even slightly out of breath they ache like crazy afterwards and I get fatigue. But the long covid clinic at Kings did lung function tests, x-rays and when that showed nothing an MRI to examine my lungs and found nothing. So unfortunately I wouldn't pin your hopes on them being able to identify a lung problem. Which is not to say you shouldn't try - you might be different from me and find that they can identify something. But maybe calibrate your expectations about that from the fact that a lot of people with long covid feel their lungs are damaged but nothing shows up. Sorry not to be more positive, but I'm saying it because you might want to pursue other paths as well at the same time.

The standard things you can get out of a slightly more sympathetic GP are a referral to a long covid clinic and a referral to a fatigue clinic. So maybe have a think about whether you want to ask for/accept those options. As with my experience, a long covid clinic might be a gateway to examining your lungs but since they all vary so much it's hard to tell - and there are long wait times for LC clinics now I think.

 

[ska invita]

Ask for a lung function test which tests different types of capacities in your lungs. I didnt need one but got referred to it anyway as that's what Croydon offered for a gateway to the long covid clinic(I had heart symptoms I wanted checking instead but that wasn't on the menu )

After a long break I've got the nerve tingling feeling again in my feet, legs and pelvis. Bit irritating

Sorry to hear you've had a shit GP, I've had to ask not to see one of the GPs at my surgery but the others are okay. Just to say, I feel like my lungs are screwed too, in that if I get even slightly out of breath they ache like crazy afterwards and I get fatigue. But the long covid clinic at Kings did lung function tests, x-rays and when that showed nothing an MRI to examine my lungs and found nothing. So unfortunately I wouldn't pin your hopes on them being able to identify a lung problem. Which is not to say you shouldn't try - you might be different from me and find that they can identify something. But maybe calibrate your expectations about that from the fact that a lot of people with long covid feel their lungs are damaged but nothing shows up. Sorry not to be more positive, but I'm saying it because you might want to pursue other paths as well at the same time.

The standard things you can get out of a slightly more sympathetic GP are a referral to a long covid clinic and a referral to a fatigue clinic. So maybe have a think about whether you want to ask for/accept those options. As with my experience, a long covid clinic might be a gateway to examining your lungs but since they all vary so much it's hard to tell - and there are long wait times for LC clinics now I think.

Thanks both, very helpful

 

[Riklet]

Sorry to hear that. I know it sounds lightweight but do give Nytol a go if you aren't sleeping well. For a lot of people it reduces inflammation and fatigue as well as helping with sleep. It's also a weird and addictive drug - an antihistamine but with different mechanisms to other anti-histamines - so don't take it for too long and if you don't get on with it there's no point in persisting.

I know its truly ridiculous but what has been helping is homeopathic arnica pills. They seem to reduce the skin irritation and weird water feelings I am getting on my skin at the moment and which stop me sleeping and resting easily. I also had half a zopiclone the other night for some proper uninterrupted sleep. It's been a tough tough week but I hope there's light on the horizon. I may try nytol thanks.

 

[2hats]

Interesting data (for the period 1 November 2021 to 8 October 2022) from the latest ONS infection survey suggests previous infection confers degrees of protection for adults from (self-reported) new long covid on reinfection (the evidence is less clear for children - probably because the numbers are so small - they are so much less likely to experience it).

​

 

[Riklet]

Back on sertraline. trying the antihistamines but not much from them at all so far. still having sleep difficulties and resorted to low dose zopiclone to get to sleep which is a terrible habit but I'm quite weak at the moment and its awful not sleeping for hours. I am a bit better than a week ago luckily!

 

[ska invita]

Back on sertraline. trying the antihistamines but not much from them at all so far. still having sleep difficulties and resorted to low dose zopiclone to get to sleep which is a terrible habit but I'm quite weak at the moment and its awful not sleeping for hours. I am a bit better than a week ago luckily!

sounds really tough Riklet, hope things improve from here. Sleep is crucial for everyone but all the more so with post covid weakness.

Ive managed to get a referral to a Covid Respiratory Clinic - I didnt know there was such a thing, Im happy about that. Will be interesting to see how many months before I actually see anyone but at least this new GP has done something, whereas the last one just fobbed me off

 

[Riklet]

I bought some Nattokinesse but not tried it yet. Any advice Brainaddict I really need to avoid insomnia. I take a liquid turmeric probiotic currently which has been good tbh, I guess it's an anticoagulant too.

Still off work. The doc suggested April too. They think sertraline will work wonders. It does help a bit tbf... I have less anxiety and stress to deal with. I am quite restless and have been since I got covid again I think thats why I burned though so much energy in February I had this urge to do stuff right away. That and a lot of emotional stress.... break up and family stuff. And a full time job.

I am finding it useful to think of my long covid recovery as quite tied to my mental wellbeing. I'm going out walking every day and trying some walking meditation which really helps actually. And Im finally sleeping a bit better with no sleeping pills (ok I lie im taking arnica still and some sleeping vitamin supplement but still). Slow steady progress as life is a bit easier around the house etc than a week or two ago. Hopefully I will start therapy again next month... this was very useful when I was weak and recovering before.

 

[Brainaddict]

I bought some Nattokinesse but not tried it yet. Any advice Brainaddict I really need to avoid insomnia. I take a liquid turmeric probiotic currently which has been good tbh, I guess it's an anticoagulant too.

Still off work. The doc suggested April too. They think sertraline will work wonders. It does help a bit tbf... I have less anxiety and stress to deal with. I am quite restless and have been since I got covid again I think thats why I burned though so much energy in February I had this urge to do stuff right away. That and a lot of emotional stress.... break up and family stuff. And a full time job.

I am finding it useful to think of my long covid recovery as quite tied to my mental wellbeing. I'm going out walking every day and trying some walking meditation which really helps actually. And Im finally sleeping a bit better with no sleeping pills (ok I lie im taking arnica still and some sleeping vitamin supplement but still). Slow steady progress as life is a bit easier around the house etc than a week or two ago. Hopefully I will start therapy again next month... this was very useful when I was weak and recovering before.

The bolded bit is the thing that will really screw you. It sucks but you have to be really moderate with energy expenditure ALL THE TIME, even on days when you feel better. Otherwise it's a crash-overextend-crash cycle forever. It's an entire life adjustment and it's hard, but it's better to accept the new limits than repeatedly crash and sink lower and lower.

I take my natto-serra supplement in the evening, it then seems to wear off by the end of the following day and I can sleep. It might not work for everyone.

 

[Fruitloop]

Nattokinase seems to be quite variable depending on what kind of Long Covid you have. It seems like there's some that is dominated by micro-clots, some is immune dysregulation etc. If you have the micro-clots kind then nattokinase/serrapeptase can be quite magic, otherwise it might not do that much.

 

[Riklet]

I think I will hold off for now tbh. I am already taking enough stuff and tbf I do feel improvements so I will try and just be patient and accept I am ill.

An osteopath told me a few years ago they had heard from colleagues that the vagus nerve was quite affected in a lot of Long Covid patients. Relevant link. I have noticed the swallowing hesitation and diaphragm issues a lot with this relapse.

 

[ska invita]

I have noticed the swallowing hesitation and diaphragm issues a lot with this relapse.

yes breathing exercises that particularly stimulate and give muscle control to the diaphragm have been suggested before, and picked up on by doctors, definitely something that has been helpful for me.

 

[Riklet]

yes breathing exercises that particularly stimulate and give muscle control to the diaphragm have been suggested before, and picked up on by doctors, definitely something that has been helpful for me.

do you have a link to any ones you have found helpful? thanks!

 

[ska invita]

do you have a link to any ones you have found helpful? thanks!

great place to start

short and easy

theres a bit particularly about diaphragm which i do for longer, but i recommend do the whole thing

 

[Riklet]

great place to start

short and easy

theres a bit particularly about diaphragm which i do for longer, but i recommend do the whole thing

Ive been doing this daily or twice a day for the past week and found it very helpful and healing! Thanks for that.

Making slow positive progress.

 

[ska invita]

Ive been doing this daily or twice a day for the past week and found it very helpful and healing! Thanks for that.

Making slow positive progress.

thats great to hear, good luck

I follow it up with 5-10 mins of Sun Salutation, a classic yoga routine. Theres a million youtube videos on it, though ive tried to find one to post and they all make it look more confusing than it is. If you can get to grips with that little routine its a great one to do as as each move is all about getting air into the lungs, and also i find it helps stretch my legs and alleviate cramps.

The key thing is to breathe in on moves that open lungs, and then breath out on the next move that helps exhale.
As in....
Start - Stand up straight
1. Raise arms slowly above your head - Breathe In while doing it
2. Touch Your Toes - Breathe Out while doing it
3. Drop to your hands and extend one leg backward - the pose you see runners do as they're about to start a race - Breath In
4. Step 4 breath out etc
each step is designed with a breath in or out in mind.

You can do the routine really slowly, holding a pose for a few breaths, or once warmed up you can move quickly through it on each breath.

Its a really good one, really makes a difference i find.
The hardest bit is being disciplined to do it often!

 

[Riklet]

How is the change in weather affecting everyone? I def feel healthier and like my body recovers more quickly from exertion with drier sunnier weather and warmer temperatures.

Things are getting slowly better for me. Doing longer walks and some cycling. Doctor signed me off for April too and my work are being v sympathetic. hoping to go back 12h a week at first later this month or next month.

 

[HoratioCuthbert]

Nattokinase seems to be quite variable depending on what kind of Long Covid you have. It seems like there's some that is dominated by micro-clots, some is immune dysregulation etc. If you have the micro-clots kind then nattokinase/serrapeptase can be quite magic, otherwise it might not do that much.

Well exactly, I would imagine Long Covid will turn out to be an umbrella term for a whole range of stuff given covid is a multisystem disease.

How is the change in weather affecting everyone? I def feel healthier and like my body recovers more quickly from exertion with drier sunnier weather and warmer temperatures.

Things are getting slowly better for me. Doing longer walks and some cycling. Doctor signed me off for April too and my work are being v sympathetic. hoping to go back 12h a week at first later this month or next month.

Yes!!!!!! Some sunny days up here doing my cold intolerance and fatigue wonders. But I feel like I've hit some sort of peak with recovery, as if this is as good as it's going to get.
I'm sure part of the reason the warm weather helps because when it's cold you pick up the pace. For me my speed is very much thing I need to be mindful of, not the distance I travel. But it will be different for everyone.

 

[HoratioCuthbert]

That's how the weather is affecting me - YES!

 

[danny la rouge]

Just been told my contract isn’t being renewed. Knew that was coming. It was done in a nice enough way. They said they’d have me back when I’m better. A bit shit, but that’s employment in FE.

 

[Brainaddict]

Just been told my contract isn’t being renewed. Knew that was coming. It was done in a nice enough way. They said they’d have me back when I’m better. A bit shit, but that’s employment in FE.

Shit, sorry to hear that. It ought to be covered by anti-discrimination legislation, but I expect they've checked and it isn't. Hard to prove anything when its contract work anyway.

 

[ska invita]

How is the change in weather affecting everyone? I def feel healthier and like my body recovers more quickly from exertion with drier sunnier weather and warmer temperatures.

Things are getting slowly better for me. Doing longer walks and some cycling. Doctor signed me off for April too and my work are being v sympathetic. hoping to go back 12h a week at first later this month or next month.

infinitely better
started walking home from work oten (or at least a big part of the the commute), doing up to two hours in the light evenings, a few days have been the best ive felt since....last summer i guess

walking has always proven to be great for me, really regulates and deepens the breathing without hitting that total exhaustion point

 

[danny la rouge]

Shit, sorry to hear that. It ought to be covered by anti-discrimination legislation, but I expect they've checked and it isn't. Hard to prove anything when its contract work anyway.

Yes, the contract “naturally comes to an end in June”. It’s zero hours too. I haven’t even bothered contacting the union, because I don’t think there’s anything they can do.

 

[ska invita]

Yes, the contract “naturally comes to an end in June”. It’s zero hours too. I haven’t even bothered contacting the union, because I don’t think there’s anything they can do.

hope youre going to be okay for money

 

[cesare]

Yes, the contract “naturally comes to an end in June”. It’s zero hours too. I haven’t even bothered contacting the union, because I don’t think there’s anything they can do.

The IWW has been challenging atypical contracts for a while now. With a lot of success. Challenging zero hours and agency. Even if the contract says zero hours you still have the right not to be unlawfully discriminated against.

I'm sorry to hear about this Danny.

 

[danny la rouge]

I’m still waiting to hear from social security whether I’ll get Adult Disability Payments (the Scottish version of PiP). I’ve been told it’s standard to be refused and to have to appeal. Which isn’t what you need when you’ve no mental energy. But hopefully that’ll eventually come through and be backdated.

 

[Riklet]

How are you folks all doing now?

Had lots more energy past month or two. Back at work. Just driven up to London and back the past few days. Still got symptoms but not so debilitating. I guess it takes time. This relapse from covid again in January really kicked my arse but hoping the rest of the year is more positive.

 

[danny la rouge]

I was referred to a new long Covid service that started in Glasgow. They’ve made contact, and I’m having an “initial assessment” call tomorrow. I’m not sure what they’ll do, but at least I feel someone is doing something.

 

[danny la rouge]

I’m still waiting to hear from social security whether I’ll get Adult Disability Payments (the Scottish version of PiP). I’ve been told it’s standard to be refused and to have to appeal. Which isn’t what you need when you’ve no mental energy. But hopefully that’ll eventually come through and be backdated.

It did and it was.