Long Covid

[ska invita]

Interesting, and good luck

Preventer inhaler needs to be used regularly - mine is two puffs morning and night. I'd go with what it advises on the prescription.

thanks - my freind who uses one says he rinses his mouth out afterwards as it can create "issues" in the mouth. I'll do that regime for a month and revisit - always would rather not take drugs if possible, and its far from certain it can help in this post-covid situation

 

[two sheds]

Good point - I've never had problems but I do generally clean my teeth after taking it at night. I should get into habit of cleaning teeth after rather than before taking it in morning, too.

Not sure whether it applies to long covid but I didn't take inhaler for years when my asthma symptoms disappeared for 10 years or so. The specialist said that the asthma during that time was untreated, which has led to more problems now.

Please report back - interested to hear whether it makes a difference. Do you have peak flow meter? May help.

 

[ska invita]

Do you have peak flow meter? May help.

no i dont... in what way would you recommend using it? to chart over time?

 

[two sheds]

yes - it's strange really because it doesn't always match up with how breathless I feel but it's an objective measure of how 'open' your airways are. I've recorded the same(ish) time morning and night when I have my inhaler because it does seem to change across the day. I did record any changes I was making, and was hoping to see whether any particular activity like moving bedroom to another room with less dust would change it, but I never really found anything. Interesting to see the readings though.

Eta: Got mine from the doctors, and the specialist looked through the readings to see how variable they were - helped with his diagnosis.

 

[Oula]

thanks - my freind who uses one says he rinses his mouth out afterwards as it can create "issues" in the mouth. I'll do that regime for a month and revisit - always would rather not take drugs if possible, and its far from certain it can help in this post-covid situation

Yes, you should brush teeth after using it and use it with a spacer. If not you can get oral thrush which I have had, several times.

yes - it's strange really because it doesn't always match up with how breathless I feel but it's an objective measure of how 'open' your airways are. I've recorded the same(ish) time morning and night when I have my inhaler because it does seem to change across the day. I did record any changes I was making, and was hoping to see whether any particular activity like moving bedroom to another room with less dust would change it, but I never really found anything. Interesting to see the readings though.

Eta: Got mine from the doctors, and the specialist looked through the readings to see how variable they were - helped with his diagnosis.

Mine doesn't seem to match up that well either. My peak flow always dips when I have a cold but I've felt a bit below par in the chest since having Covid and my peak flow is fine. I'll discuss it with the nurse at my next asthma review.

 

[Oula]

ska invita I'm also using cbd oil, for the joint pain, anxiety and to help sleep. Seems to help on all fronts.

I'm happy to write up a bit more of what my mate said if anyone is interested. He was specifically talking about treating rheumatoid arthritis with diet and lifestyle but I think it was all generally good advice to dealing with any sort of auto immune overreaction - which I'm guessing long Covid might be. Anyway, it was mostly common sense and there was nothing that would be a bad idea.

 

[two sheds]

Yes, you should brush teeth after using it and use it with a spacer. If not you can get oral thrush which I have had, several times.

Mine doesn't seem to match up that well either. My peak flow always dips when I have a cold but I've felt a bit below par in the chest since having Covid and my peak flow is fine. I'll discuss it with the nurse at my next asthma review.

Interesting, I'd thought spacer was just to increase the inhalant uptake.

I wonder whether the not matching up is down to the peak flow being a measure of how open airways are, while there's also how efficiently the lungs absorb oxygen (prevented by mucus for example). I don't know though, that's just a stab in the dark.

 

[ska invita]

right on cue: having a steroid comedown was wishful thinking to think it wouldn't happen i guess

 

[Oula]

Interesting, I'd thought spacer was just to increase the inhalant uptake.

I wonder whether the not matching up is down to the peak flow being a measure of how open airways are, while there's also how efficiently the lungs absorb oxygen (prevented by mucus for example). I don't know though, that's just a stab in the dark.

I think the spacer does both. I certainly haven't had throat thrush since I started using it, whereas I got it quite often before.

You might be right about the second point, or something like that anyway.

 

[Brainaddict]

So it took me about three weeks to recover from the vaccine in the end, after it caused a flare-up of long covid symptoms. I am back to where I was now - which is able to do most everyday stuff without trouble, just more tiredness than pre-covid at the end of the day, and I find long walks and other vigorous exercise a bit too much still.

 

[ska invita]

Long Covid symptoms ease after vaccination, survey finds

Exclusive: Fifty-seven per cent of people with illness say they were better overall after jab

www.theguardian.com

Scores across 14 common long-Covid symptoms were compared before and after the first vaccine dose. Data showed that 56.7% of respondents experienced an overall improvement in symptoms, with 24.6% remaining unchanged and 18.7% reporting a deterioration in their symptoms.

In general, those who received mRNA vaccines (Pfizer/BioNTech or Moderna) reported more improvements in symptoms, compared with those who got an adenovirus vaccine (Oxford/AstraZeneca). In particular, those who received the Moderna vaccine were more likely to see improvements in symptoms such as fatigue, brain fog and muscle pain, and less likely to report a deterioration, the analysis found.

...annoyed i didnt get the moderna - oxford fucked me up for a week with no overall improvements

 

[platinumsage]

I’m highly dubious about those results, as it wasn’t a placebo-controlled trial, just a social media survey. The proposed mechanism whereby virus hides away in the body and is then cleared by mRNA vaccines but not by the AZ vaccine doesnt seem to have any sound scientific basis.

 

[ska invita]

I’m highly dubious about those results, as it wasn’t a placebo-controlled trial, just a social media survey. The proposed mechanism whereby virus hides away in the body and is then cleared by mRNA vaccines but not by the AZ vaccine doesnt seem to have any sound scientific basis.

why a year in there are seemingly no clinical surveys is baffling to me

 

[Brainaddict]

why a year in there are seemingly no clinical surveys is baffling to me

It seems to take medical science a long time to recognise something exists, then a long time to define it, then a long time to work out how to measure it etc etc. It ocurred to me the other day that I filled out the Zoe symptoms app for ages and never once did it ask me if I thought I had long covid. Would be a simple tick box. Now because they haven't done that, they can't easily answer the question of whether the vaccine makes people with long covid feel better or worse, even though they are perfectly placed to get that information.

 

[elbows]

May be of interest:

Teaching post-Covid patients to breathe again

A tai chi teacher found he was contacted by patients during the pandemic.

www.bbc.co.uk

 

[Oula]

I got my blood test results and I have a low white blood cell count. I need to talk to the doctor next week to find out how low, what type of white blood cells and if it is likely to have been caused by Covid or if I had it before (I did have quite a bad infection just before getting Covid and apparently it makes you more vulnerable to infections). It does seem likely that it can be caused by Covid. It would explain a lot of my ongoing symptoms.

COVID-19’s impacts on the brain and mind are varied and common – new research

Non-specific illnesses, such as headache and fatigue, are common, as are mental illnesses such as depression and anxiety.

theconversation.com

Extrapulmonary manifestations of COVID-19 - Nature Medicine

Recent clinical observations have prompted clinicians to think of COVID-19 as being more than a respiratory disease.

www.nature.com

 

[Miss-Shelf]

It seems to take medical science a long time to recognise something exists, then a long time to define it, then a long time to work out how to measure it etc etc. It ocurred to me the other day that I filled out the Zoe symptoms app for ages and never once did it ask me if I thought I had long covid. Would be a simple tick box. Now because they haven't done that, they can't easily answer the question of whether the vaccine makes people with long covid feel better or worse, even though they are perfectly placed to get that information.

i stopped doing the zoe study because of that - it really irked me. Plus loads of people reported issues with menstruation and that wasn't added [at least by the time I stopped doing it]

 

[cupid_stunt]

Just posted this in the main uk covid news thread, for those not following that thread, I'll pop it here too.

They always refer to severe cases, i.e. those that require hospital admission, but to me 'long covid' is fucking severe, and the majority suffering it have never been in hospital for covid, 376,000 are suffering a year on from infection.

An estimated 1 million people in private households in the UK reported experiencing long Covid in the four weeks to 2 May, according to figures from the Office for National Statistics (ONS).

Of these people, an estimated 869,000 first had Covid-19 – or suspected they had Covid-19 – at least 12 weeks previously while 376,000 first had the virus or suspected they had the virus at least one year ago.

Long Covid was estimated to be adversely affecting the day-to-day activities of 650,000 people, with 192,000 reporting that their ability to undertake day-to-day activities had been limited a lot.

376,000 people in UK have had long Covid symptoms for at least a year – ONS

Data shows marked increase in self-reported cases of symptoms lasting 12 months or more

www.theguardian.com

 

[Oula]

Just posted this in the main uk covid news thread, for those not following that thread, I'll pop it here too.

They always refer to severe cases, i.e. those that require hospital admission, but to me 'long covid' is fucking severe, and the majority suffering it have never been in hospital for covid, 376,000 are suffering a year on from infection.

376,000 people in UK have had long Covid symptoms for at least a year – ONS

Data shows marked increase in self-reported cases of symptoms lasting 12 months or more

www.theguardian.com

Thanks for sharing that.

I've struggled to come to terms with having long covid. When I first started looking into it it was always linked to having had more severe covid. I looked up joint pain from long covid on the nhs website and it suggested that it had been caused by being on a ventilator/lying awkwardky in hospital. And that depression/anxiety is caused by having seen people die around you. There didn't seem to be anything about long term effects on people who hadn't been to hospital. This had made me feel like I'm complaining unnecessarily.

I am struggling to do my job, though. It's quite physical and I just can't do it as I could before. So that, and having been in constant pain for 5 months, has had quite an impact on my life. And I drop and break things.

The article I linked to above said it seems that people who had less severe covid might be more likely to have long term joint /muscle pain.

 

[cupid_stunt]

Thanks for sharing that.

I've struggled to come to terms with having long covid. When I first started looking into it it was always linked to having had more severe covid. I looked up joint pain from long covid on the nhs website and it suggested that it had been caused by being on a ventilator/lying awkwardky in hospital. And that depression/anxiety is caused by having seen people die around you. There didn't seem to be anything about long term effects on people who hadn't been to hospital. This had made me feel like I'm complaining unnecessarily.

I am struggling to do my job, though. It's quite physical and I just can't do it as I could before. So that, and having been in constant pain for 5 months, has had quite an impact on my life. And I drop and break things.

The article I linked to above said it seems that people who had less severe covid might be more likely to have long term joint /muscle pain.

I admit that I haven't been following this thread, because there's so many covid threads, it's hard to follow all of them

But, I know two people locally suffering long covid, neither had been in hospital, one hasn't been able to return to work since Jan., and the other is only managing p/t hours since Dec.

 

[existentialist]

Thanks for sharing that.

I've struggled to come to terms with having long covid. When I first started looking into it it was always linked to having had more severe covid. I looked up joint pain from long covid on the nhs website and it suggested that it had been caused by being on a ventilator/lying awkwardky in hospital. And that depression/anxiety is caused by having seen people die around you. There didn't seem to be anything about long term effects on people who hadn't been to hospital. This had made me feel like I'm complaining unnecessarily.

I am struggling to do my job, though. It's quite physical and I just can't do it as I could before. So that, and having been in constant pain for 5 months, has had quite an impact on my life. And I drop and break things.

The article I linked to above said it seems that people who had less severe covid might be more likely to have long term joint /muscle pain.

One of the huge downsides of our allopathic medical system is that it always seeks to ascribe everything to some sort of physical, organic cause. That list of "your <psychiatric symptom> is explained by <mundane physical event>" is far too reductive to ever be much use in the real world. We know that there are correlations between physical and mental health even where an obvious causal link isn't present, and this kind of thinking is very much a part of the "all in the mind" mentality which sees so many people dismissed, or written off as cranks, by the medical establishment.

Which is stupid, because it thrusts them straight into the arms of the "woo" crowd, who do generally at least give the appearance of listening, if only so they can punt some crystal healing, or magic herbs at you. It is improving, but there is still very much an embedded culture that insists on treating everything as organically-caused until there are no options left, and then, sometimes quite reluctantly, acknowledging that there might be some other link. Grr, etc.

 

[Brainaddict]

Thanks for sharing that.

I've struggled to come to terms with having long covid. When I first started looking into it it was always linked to having had more severe covid. I looked up joint pain from long covid on the nhs website and it suggested that it had been caused by being on a ventilator/lying awkwardky in hospital. And that depression/anxiety is caused by having seen people die around you. There didn't seem to be anything about long term effects on people who hadn't been to hospital. This had made me feel like I'm complaining unnecessarily.

I am struggling to do my job, though. It's quite physical and I just can't do it as I could before. So that, and having been in constant pain for 5 months, has had quite an impact on my life. And I drop and break things.

The article I linked to above said it seems that people who had less severe covid might be more likely to have long term joint /muscle pain.

Have you joined any of the fb groups or forums Oula? They can be a bit overwhelming with information/theories/symptoms but at the same time they are the only places where you can discuss symptoms with people who are experiencing the same and I think many people find that very valuable. I really sympathise with the mental struggles that come with this stuff (I took 5-htp for a while which helped a bit with that).

For inflammation - which most people with long covid seem to have to some extent - I felt like quercetin helped (I used this https://www.amazon.co.uk/Quercetin-Complex-Vitamin-Contributes-Bioflavonoids/dp/B083F34SVQ) Don't know if you've tried that. Also before bed 50/50 cbd/thc weed, rather than just cbd.

 

[Oula]

Have you joined any of the fb groups or forums Oula? They can be a bit overwhelming with information/theories/symptoms but at the same time they are the only places where you can discuss symptoms with people who are experiencing the same and I think many people find that very valuable. I really sympathise with the mental struggles that come with this stuff (I took 5-htp for a while which helped a bit with that).

For inflammation - which most people with long covid seem to have to some extent - I felt like quercetin helped (I used this https://www.amazon.co.uk/Quercetin-Complex-Vitamin-Contributes-Bioflavonoids/dp/B083F34SVQ) Don't know if you've tried that. Also before bed 50/50 cbd/thc weed, rather than just cbd.

I hadn't but I have now, thanks. I'm also taking CBD.

 

[Oula]

I had my doc appointment yesterday. Apparently my white blood cells are a bit high. But not very high and the doctor is not concerned about it. We did have a very long and useful chat about long Covid. She was nice, sympathetic and thorough. In terms of action, I need to have another blood test in 4-6 weeks to check the white blood cell levels again and also to check my vitamin D. I also need to take more vitamin D supplement. She's going to send me for an X-ray and I have an appointment with a specialist physiotherapist. We also talked about exercise, diet and watching out for my mood as apparently long Covid symptoms seem to go in various groupings and depression is in the group with fatigue, joint pain and muscle pain. She said it was good I was having counselling. So, I'm feeling quite positive about it all. Although so fed up with the constant pain.

 

[BristolEcho]

Glad it went well. It's amazing what a good GP can make you feel like. My partners has been amazing throughout.

 

[Edie]

Interesting article on post viral fatigue being an immune disease, possibly an oestrogen-associated autoimmune disease. And explaining the sex bias, especially that of young and middle age women, due to women’s immune systems being extra reactive during child bearing years.

Why are women more prone to long Covid?

While men over 50 tend to suffer the most acute symptoms of coronavirus, women who get long Covid outnumber men by as much as four to one

www.theguardian.com

 

[Oula]

Thanks @Edie,that is really interesting

 

[Riklet]

How are you guys doing now?

Ive been going for more walks and getting out more. More tolerant of sunshine and being outside, less fragile basically. Still not able to work or study really but im feeling more bored which is a good sign I think! Much more energy overall and better mood too. Still got lots of twitches, spasms and involuntary jaw and tongue movements etc. Bit lame and embarrassing. My eyes are much better tho and im sleeping really well. Also moved out from my parents' and all is ok... living out of town in a big village and it's great.

The doctor thinks the massive rash and red spots I've had since last summer are psoriasis. I had palmoplantar pultulosis diagnosed a few years back (white bloodcell weird little blisters... autoimmune thing) and that has totally cleared up on my feet since covid but now just got this huge mottly rash spreading all over my shoulders and back. Doc thinks they are connected and both could actually be psoriasis. Steroid cream prescribed...

Also got back in with the fatigue clinic, did the massive form and got my appointment next week finally!

 

[Oula]

I've started taking a new CBD oil before bed and am actually sleeping properly for the first time in months. Mainly as a result of this (I think) my joint and muscle pain and fatigue has improved massively. I now go several hours without pain most days and completely forget about it for a while. It's made such a difference. And made me realise how bad it was to be in pain all the time. I really felt exhausted, totally distracted and depressed. I still have some bouts of pain but they are much less bad and I find they get me down much less as they are not constant anymore.

 

[Oula]

And then I got a bit drunk last night and my hands really hurt again today.