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.

Evening all. This was posted on the Facebook group. I don't know much about this guy's credentials but it supports the idea of long covid as a sort of dysautomnia and that the body basically needs to relearn how to run the autonomic nervous system.
It's a very long video with far too much waffle, but some useful tips around the middle.

vimeo.com/451110553

whatsnext I was looking at my FitBit app last night and it seems to be that my heart rates goes down for a week or so, then climbs again, sits at the higher rate and goes back down over a monthly cycle. But I am not entirely sure this bears much relation to the chest pain which seems to be triggered by speaking, which causes the cough to flare up and then the chest pain sets in. Chest pain has now been back solidly for ten days. Heart rate also does not seem to be linked to how many steps I do. So if there is a pattern, I am stumped as to what it is. I think my heart rate goes down around ovulation but that is the only thing which looks obvious. Ovulation does not last six days but your fertile window will (so from when your body starts gearing up to ovulate, your cervical mucus changes towards clear, egg white).

It does sound a lot with family at the moment. I hope you manage to get some rest in between things, or are able to say now and then that you need rest. The thing I would find tiring with visitors is not only the activities, but the talking.

fedupofbed I am glad you are finding small pleasures. You really are going through the mill

seriouslynonames I am sorry you are having a relapse (but yes, I agree that this makes it sound like you got better in between!).

So I was out with DD yesterday for a bit and I kept mixing up words. To be fair, I was tired but it was really obvious and not happened for a while. As soon as I said something I would realise it was wrong 🤦‍♀️.

@TiddleTaddleTat Thanks for this movie. Really good. I've only watched the 1st hour so far but it confirms what we've suspected for a while. It's good to hear an expert talk openly about it.

I've asked a few health professionals about autonomic dysfunction but it was the physiotherapists I saw who engaged and agreed it looks likely. Off the back of them and their help I have tilt table test in a couple of weeks.

@MillStone glad it was useful. I agree, it feels like physiotherapists - especially those specialising in related areas - have the most helpful rehabilitation advice. Although evidence on covid is still emerging they can apply experience of other illnesses. I think his advice is good, but for me I think there's a CFS/ME element as well as the autonomic dysfunction.

My resting heart rate is nuts, it climbs up for a week or two then drops down over a week or two. No relation to aunt flo’s Arrival.

@seriouslynonames hope your relapse is short lived. Sounds like it could have been the hoovering the day before? I'm definitely seeing a pattern with post exertion fatigue 1-2 days afterwards. Hoovering is something I need to be careful with too. I've tried doing it one room at a time, and not moving any furniture. That's the best I can do for now. However my bloody hoover (cordless) has a failing battery and is spitting the stuff right back on to the floor. Just tried to hoover the dining room while sitting and it's ended up worse than before. And I still need a rest. Gah!!

OK folks...
Abdomen ultrasound...

Seemed fine except a "birthmark on my liver", apparently. To be checked in 6 months. Still no bloods back. Still convinced the burning skin is nerve.

I'll report back when I get the blood results.

But so far...touch wood...nothing serious...just remnants of the battle I suppose.

Xxx

Hi all
My GP still denies its post covid
He did antibody test and its negative so he said
he can't refer me to covid hub.
I have on and off all classic symptoms but main one is burning skin (it's only upper back b4 but it's left leg and hand ,upset stomach,joint pain,fatigue, shaking hand and numbness,musucle twitches all over body.
Does anyone already been to this covid rehab hub bcz its mention on Nhs website they open on Surrey.
When are they going to open in other cities? Any info will be helpful.Most of us here is getting negative antibody test, does that mean we can't get help.surely there is other ways to go?please help.
Six months still here.gp going tortoise speed and not taking seriously.
Nhs website mention covid hubs opening late summer. Tried to ring the phone no but it's media office.
Any other contact ?
Thanks
Will pray for all of us speedy recovery 🙏

@KatySun Ahh ok that could explain the average six days relapse/worsening symptoms then. I’m due period so will see how that differs too. All the other days still present symptoms but are more of the achy type ones.
The talking bit really is hard! I keep feeling as though I need to clear my throat, almost like a dry throat.

It’s frustrating with the mixing up of words isn’t it, I still get it also and just a very foggy head, I’m losing everything at the moment and come across as very disorganized/dizzy to people I’m sure! I was very sharp before..it almost feels similar to during pregnancy

My hands are having that stiff, not working properly feeling at the moment. I’m thinking is from all the driving 🤷‍♀️neck and shoulder aches just from driving around 🙄
I’m just over six months, so the thing about this thing being over by six months doesn’t seem to apply to me!

Oh sorry
Just read, some of you in Sheffield been to hub.please keep updating your journey.

@Whatnext2018
Same here,not only hand it's also leg pain and numbness.
Six month and still going roller coasters. Don't know when will this end. Opening school makes me more nervous and anxious for kids.

@Beautifulpeople your GP should be able to make a diagnosis of post covid without a positive test. If you refer them to the BMJ article on long covid it states that it can be diagnosed based on symptoms

www.bmj.com/content/370/bmj.m3026

@Beautifulpeople it’s so hard isn’t it, I really had an optimistic thought that it would be gone by September.

Does anyone else have some hair loss? I’m not really sure if it would be classed as hair loss..for example, when I run my fingers through my hair, a couple of strands come out most times? Not sure if I’m being paranoid and this is a normal thing to happen?
Some comes out when washing, a handful, but I’m used to a bit coming out (I have longish hair) and there’s obviously some in my brush.
Is this a normal thing to happen after illness?

Morning all. I was thinking of buying a lighter weight cordless hoover @TiddleTaddleTat - but perhaps not given your struggles! I will do no more hoovering for now, will just have to live with dirt and dust

I have a question about mornings and getting up. I have never been one for early starts unless forced to - like having a train to catch to work. But since lockdown started (I got ill just before lockdown) I just cannot get up at a decent time. I am waking most mornings before 6am which is crap, usually I get back to a light sleep/doze for an hour or so, but even after I wake again I can't get up straight away. I am blaming fatigue but wonder if I might actually feel better getting up soon after I wake, or even just the same time each day, say a reasonable time like 7.30am.
How are you guys doing in the mornings? Are you able to get up and get going?
Any thoughts welcome! Thanks

@AndsLee glad your ultrasound was clear.

@Whatnext2018 I have exactly the same cough you describe when speaking. The respiratory physio I saw thinks it is related to not breathing properly any more. She's given me some exercises to do and she really emphasised always breathing in and out through the nose. She said it's really important to breathe in through the nose prior to coughing to reduce the impact of the cold and dry air on the back of my throat. More general details of breathing pattern disorder on the website below.

www.physiotherapyforbpd.org.uk/

My SOB and coughing when talking has been okay lately but not sure how much of this is to do with the above and how much of it is to with the crazy intermittent pattern of symptoms 🤷🏼‍♀️.

@KatySun I don't get chest pain but may be worth thinking about breathing patterns too if it's set off by talking?

@Beautifulpeople sorry you're still struggling to get support. I'm anxious about school starting too, especially the secondary schools - bigger kids, bigger bubbles and teenage attitude to risk, eek.

@TiddleTaddleTat
Thanks for link
@Whatnext2018
Yes I m counting days and checking calendar so offten. Everything is going so slow
@fedupofbed
Yes my son starting year 9 in secondery🤞

Is there any way someone more technical person can put all useful links and video to one place please.
Easy to find
Thanks

I am having a terrible relapse- worst yet at nearly six months. I have overdone it in the last few weeks but I wa t to ask others what their relapses are like. I get over sensitive hearing, a feeling of being poisoned, burning icy skin, nausea, fatigue, Achy weak muscles and breathless on exertion. Does that sound like anyone else?

@godhelpusall sorry to hear that. My relapses are more mini than that and are reprises of the symptoms I had when sick, but not in the same combination necessarily. So for a long time they were around sob and increased burning but currently diarrhoea and burning are the thing.

@godhelpusall sorry you're going through that. Yes, my relapses are similar. The last one lasted longer than I expected. I'm doing whatever I can to avoid another one but it's so hard.

@godhelpusall yup that’s mine. The noise sensitivity is hard.

Are any of you working? I'm facing going back to teach at uni in 3 weeks but I'm really not sure I can.

@godhelpusall
I'm hoping to return to work on a part time basis this week (usually full time ++).
I will need to be fully remote.
I don't know if these things will be accommodated by my employer.
If not, my time off will now be unpaid.
But health has to come first.

I posted a whole back when stressed about ds’s long covid then managed to lose the thread. So sorry to hear people still struggling with it and/or not getting a decent response from the gp It’s bloody frustrating. We’ve been lucky that our gp is really on the ball about long covid as she has had some other (adult) patients. It’s great to hear though about covid clinics. Hopefully the awareness will keep spreading!

Can I share some good news? Ds has been having long covid symptoms for 5 months now but his latest blood test has come back with “normal” inflammatory markers (yay!), his recurrent infections have eased off and he’s starting to feel more “normal” in terms of his energy levels. I am so so relieved!

It’s a bit of a pain that he’s back at school this week with all the exhaustion that will bring, but fingers crossed he’s on the mend and the exhaustion won’t hit him too hard.

I have forewarned his school and Gp is ready to help if he does relapse, but for the moment I’m just going to enjoy the relief!