Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

@Whatnext2018 I’m just past ovulation and I do feel like it’s someth8ng hormonal.I’ve had the dropsies before occasionally but yesterday and today I’ve been unable to make food because of it. Tried resting doing some craft but started dropping it.

@LetsBeSensible It’s really frustrating isn’t it, I had it a lot in May and June (daily) seems to be coming back a bit though.

@TiddleTaddleTat I feel much much stronger than that 😂
I’m in Portugal (can’t remember if you can do this in uk 🤔 never had to before this!)
There is a blood lab nearby where you can requests blood tests and they email results a couple of days later. There’s a nurse there who takes your blood and they send it off to be checked by the lab. Have to pay obviously but by the time I get to see a decent doc and have him send me for the test, it’s easier just to head down and do it in 5 minutes.

Just reading up on the symptoms of low B12/folate and anaemia etc..lots of the things we all experience, guessing you’ve all had them checked?
My last blood tests were May, assuming these things were looked at but it can change. I don’t take B12 either but will get some.

I had a full nutrition run 3 months ago and then b12 checked again more recently. All fine.

@Whatnext2018 yes I've had B12, iron, D checked and all five

Fine

My bloods are always good fo itamins.
GP gave me a peak flow monitor, cue new obsession! First blow was pretty poor to be fair, 300

Hi @Whatnext2018 I had B12 checked and it was fine, BUT when I began these antibiotics earlier this week I ended up buying some B12 in the pharmacy too thinking no harm in trying...

By the way this is very detailed and interesting on long haul covid. It’s a podcast, but I’ve just read the transcript here online for each section

www.thenakedscientists.com/podcasts/naked-scientists-podcast/sick-covid-long-haulers

Hi everyone. Ha @LetsBeSensible I laughed about your new obsession, as in turn I've become fixated by my thermometer, oximeter and now my Fitbit. As well as checking my heart rate it also does all sorts of measurements for my sleep which I'm checking literally the moment I open my eyes - so stupid as if I was more relaxed I'd probably sleep more.

After my stellar week embracing the stairs and the laundry I've rather predictably relapsed. Don't mind the tiredness but really struggling mentally as well as physically with the SOB... when will it end? @Criticallythinking yes it feels for me too like I'm high up and there's not enough oxygen rather than any more conventional wheeziness I've had before. I had a virtual apt with a physio today, and as others have said on this thread, she said she thought I might now have dysfunctional breathing. I do breathe into my diaphragm but there should be a 2 second pause after the outbreath before breathing in again. I have to practice this lots (and I find it difficult!). I have a whole bunch of lung function tests tomorrow morning. I'm exhausted thinking about it.

@Whatnext2018 I've noticed that my temperature goes up between ovulation and my period - I think this is natural to a certain extent but it pushes me up to a low grade fever. My heart rate increased last time too, but that could have been the heatwave.

Does anyone else use a smart/fitness watch which tracks stress? I have a Garmin, and was interested (disturbed!) to see that after two nights of very little sleep I’ve had two consecutive days of medium/high stress recorded - even though physically I’ve been trying to rest. The device has recorded no rest at all, even while I’ve been lying in bed...never had this before.

I thought it must be faulty, then found this online
www.heartratemonitorsusa.com/blogs/news/garmin-stress-level-feature-shows-interesting-influenza-data

This is the first time I’ve used the Garmin watch during a bad relapse of symptoms. I’m going to keep using it to see when/if it happens again. Scary the impact a virus can have on stressing the entire body and even preventing rest and natural healing processes, especially when combined with lack of sleep

Thanks you lot, I was really down earlier. Forced myself to go out. And to do a phone call. Felling a fair bit better now.
My Fitbit (old obsession) rules my life! Just checked heart dataas it has been a bit fast today, well last night about bedtime it shot up to 180.
I know it’s batty but I like to see some data that looks weird when I’m having weird symptoms. Probably years of being told it’s just “stress you didn’t know you had”

@LetsBeSensible
I’m glad you managed to get a bit done today and feel a bit better.

Yes that’s exactly it on the data! I feel weirdly validated. It’s understanding for me why, after a day of ‘resting’ I still feel completely unrested. Not going mad after all...

On the flip side, I have enjoyed seeing the ‘rest’ (blue blocks) appear in the app after rest days when I have actually rested, and felt slightly better afterward!

Hope this is a harmless addiction... I need my kicks having cut out pretty much everything else

Morning all- I’m up nice and early with my ridiculous bowel issues.

I broke my Fitbit strap and didn’t use it for about a month. Just got a new one last week and started tracking stuff and I think it might be making me feel worse anxiety wise ...I am doing way more steps than I thought even when trying to rest... wondering whether to ditch it again for a bit at least during this relapse.

When it comes to vitamins for me calcium has kept being low and I assume no one else has noticed that? It might account for some of my symptoms but may well not so if you all haven’t got low calcium it could be an anomaly I guess.

Morning all, I had a CFS assessment yesterday. The result being that I don’t fit the CFS diagnoses due to symptoms, pattern, current recovery timeline / trajectory.

They said their best guess is that it’s a long and nasty post viral fatigue.

They also offered some further help with pacing and increasing activity which was really good of them.

... just saying because we all share very similar situations and the topic of CFS emerges a fair bit.

@MillStone I am so glad to hear this, I have found it a bit sinister how quickly the narrative has become ‘this is CFS/ME’ and I worry about agendas from high profile people e.g. those leading ME associations writing articles about how we are joining their ranks (in the Guardian). I really feel for people with CFS/ME and have no doubt about the seriousness of their condition. But we run the risk of missing things about our particular long Covid conditions if we constantly say it’s about how much we rest and pace which is then our responsibility (and our fault if it doesn’t work) no one has actually shown that and we need more investigations, and tracking of symptoms etc to ensure we get the right care.

Anyway rant over and hope you are feeling ok today and others too.

Also just to say I do think pacing and rest are important! But probably not the full story for us

Many thanks for this Millstone
I don’t think I fit a CFS/ME profile either as my weekly steps average is around 9-10 000 steps right now. I am honestly wondering about the point that I need to do more exercise to improve cardio-respiratory fitness, not less, but I don’t know what the best thing to do is. I don’t understand really the source of the chest pain and why talking in particular triggers this. These are the questions I need to ask my GP.

@MillStone that is great to hear your update from the CfS service. I was wondering whether to push for a referral but having looked at the CCG's admission criteria in my area lists symptoms that I simply don't have. You need four of those plus fatigue.
My GP agreed CFS is not quite an appropriate diagnosis because there are additional (and more concerning) symptoms to fatigue.

@Criticallythinking I agree the narrative is concerning about CfS, I think that many people with ME are pleased to see the profile being raised a bit with all the long covid stuff.
I do find pacing and rest is something that helps me feel marginally better, and I do also get post exertional malaise. There are other things that are common to both eg muscle pain, tinnitus, etc.
The investigation side is interesting. I am waiting to hear if I will even get a referral to cardiology. I'm quite concerned I have damage to my heart. Despite following advice for CFS (as far as possible in my circumstances at the moment) I still am barely improving from month to month. Still, it could be argued that is pretty typical at this stage of recovery after a severe viral infection. Or, typical in early stages of CfS.

My biggest concern at the minute is about the hundreds of thousands of us getting appropriate investigations on the Nhs. We need research ASAP so that we can be provided treatment , investigations are necessary of course but how on earth everyone with these symptoms can be scanned etc is I just don't know. There is already such a backlog of people waiting with cancer etc. It's just a mess!

@KatySun fully agree, also doing lots of steps. And wondering how to increase exercise without making myself worse. Let us know if you find anything out? My GP said definitely reintroduce more exercise - light cycling etc, but I stopped that when I got unwell with the stomach bug.

Until I got the Covid and revisited all the CFS/ME info, I didn’t know how much the “community” had grown/changed. First it was ME, then it was CFS, now it’s ME again, with a really aggressive group of campaigners online.
SeemI do think that covid has some distinct damage and hangovers which are specific to covid and it does need it’s own research. But at the same time I have to say, there’s also exact overlap with CFS/ME with the fatigue and autonomic issues (brain fog, sweats, nerve pain). Personally I do think that if there had ever been any proper research and funding for CFS/ME then we’d be at least halfway to treating long covid but we’re not, because there hasn’t been.
To be fair graded exercise therapy (GET) has been found to be harmful but NICE have not got round to removing their validation for it. In real terms, if ME charities and champions and sufferers hadn’t done the research, there’s a good chance that we’d have been recommended pacing plus “pushing through” low level exercise during the last few months.
At the same time I do feel the ME CFS SEID whatever they call it community is coming across a bit HA! See how YOU like it!!!

@LetsBeSensible absolutely it shares symptoms for some people. But it also overlaps with lots of other diseases. My initial symptoms were very similar to Guillian-Barre syndrome but it didn’t progress. Then I had symptoms indicative of arthritis but tests were negative. My latest problems mimic inflammatory bowel disease but I expect test results to be negative. We know that long haulers all have a wide variety of symptoms. So whilst I hope we can learn from how others have managed their conditions, I don’t think the high profile people putting the emphasis on CFS/ME alone are that helpful.

I’ll stop now as I don’t want to be annoying!! And I’m grateful for all the hands on advice and input here from those who know what they are talking about and have experienced CFS/ME.

I completely agree @LetsBeSensible . I think there a lot of overlaps but also completely different patterns too.

The pacing is so confusing. I know that in the early days it was a vicious circle and the longer I was in bed for the more deconditioned my muscles became (including my heart). Since I've started moving more my POTS-type symptoms have pretty much disappeared - my heart rate is so much better. But I've always tried to listen to my body and it was so slow. I feel like I've overdone it this week and am VERY exhausted. I will be in bed for most of the day.

But my exciting and yet puzzling news is that my lung function tests were all good! Actually better than good, she said I was slightly above average for my age. Admittedly I wasn't feeling short of breath this morning but still. I'm getting proper feedback on Wednesday but she seems to think like the physio that it's dysfunctional breathing. It's like my body's forgotten how to breathe properly, and what should be the most natural thing in the world is now out of kilter. Who knows, it's all such a puzzle. I kind of wish I'd been having one of my SOB episodes at the time though to get an accurate picture.

@Criticallythinking have you tried a good probiotic for your tummy troubles? It may be a coincidence but a lot of my GI symptoms seemed to disappear after I started taking Symprove. I've now finished the course and wondering whether or not to continue.

@fedupofbed great news re. Lung function tests - that must be a relief? Although I know what you mean about not having the symptoms at the time, although it does hopefully suggest that there are no structural issues.
I suppose the dysfunctional breathing idea would fit with the theory around it being to do with disruption of the autonomic nervous system.
The videos posted a while back on fatigue discussed the issue of deconditioning. To pace properly and to rehabilitate you would be trying to increase activity in a very measured and intentional way, but extremely slowly. Deconditioning absolutely does contribute to fatigue and that's what it's a vicious cycle - the problem with booming and busting is that when you bust you effectively pause the reconditoning and delay the process.

Thank you @TiddleTaddleTat I will go back and look at those videos. Yes it's a big relief about my tests as today at least my lungs are working perfectly!

A friend just sent me this... some good news for the day... hopefully we'll all have long lasting immunity.

www.goodnewsnetwork.org/people-have-lasting-immunity-to-covid-19-new-studies/