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.

It was strange yesterday evening, we went out to get Dd a new car seat, all was fine, quite happy, shopping around. As we got into the car and drove home, my mood just fell..for no reason, I felt so empty and kind of hopeless..I had that strange, detached feeling, almost robotic like dullness for a couple of hours before bed. Haven’t had that since weeks and weeks ago, I remember feeling it almost daily. I think may be due to being on my period. The effects on my mind worry me more than anything else.

@Whatnext2018 that sounds horrible, that sudden mood change. I think it is common with covid, I suppose we don't know if it's a direct effect of the disease or totally understandable response to the circumstances of being unwell, in the middle of a global pandemic, etc.

In terms of our recovery and reinfection, I am hopeful that we will return to good health eventually. We may have residual issues in some areas, who knows, but hopefully they will not be serious. Reinfection seems unlikely (yet) but without research we just don't know. I would expect it's too soon to be reinfected but I honestly have no idea. Covid is a really terrifying disease, and I am probably feeling more anxious as I see the numbers rising in other European countries just as they did before our (late) lockdown and yet so many people still going about usual business and not really taking it seriously enough.

Not had a chance to catch up on the thread yet, but just quickly to whatsnext - I guess my main question would be if the low, empty mood persisted or whether it lifted?

I was going to say what Tiddletaddle already alluded to - namely that going out and about now is quite a strange experience - the same but so changed. So you have to think all the time about masks, social distancing, sanitising hands, what you can do where - which is stressful. It sounds like you shopped around a few places so in a sense, maybe it is a bit like my chest pain gets worse if I overdo it - because you had this symptom as part of your illness, when you do too much, it is triggered, almost like emotional fatigue. When you rest again, hopefully it passes?

I hope that does not sound patronising me saying you were doing too much by shopping for car seats! I have been shopping twice for things and I found it emotionally draining and quite stressful (DD said the same) and I limited myself to achieving two things each trip, whereas previously I would have done everything at once. It is emotional - nothing is the same, except if we thought too much about it, we could not cope, so mentally you have a kind of dissociation.

If it persists, obviously see a doctor, but I think maybe for now, it is a sign of your body and mind telling you when you need a rest?

Ok folks... I'm feeding back about my appointment today (not to be all me me me I promise, more to let you guys know what the consultant said to me today. I often found that comforting when others did the same).

Firstly, I went for a walk with the consultant wearing an oximeter. My stats were fine. But, as you guys know, I've always had more of the gastric element than chest issues.

So, back at the "ranch", the consultant listened to my story intently, taking notes. She was brilliant. She then examined me - a proper examination. This is what she has found so far:

• Listened to my chest - clear.
• Felt for glands - concluding that the swelling was muscular and NOT swollen glands.
• Looked at my skin discoloration and rash - has decided to do an ANA test, but also wants to consult with others in the Infectious Diseases dept to draw up a list of the "right" tests, as she put it. I'll get this done next week, along with an antibody test. She thinks it's auto immune, but nothing toooo sinister. (She also thinks this why there is muscle pain).
• She has advised that I get back on Omeprazole. She is adamant that the rash is not a side effect. She also looked in my mouth and ruled out thrush. So...

-The "breathing through dust" sensation - @Moodgie you might be interested... She said this is to do with the Acid Reflux. That I have "inducive laryngeal obstruction", hence the "get back on omeprazole, no arguments!" haha. So, she's checking with ENT to see when they are taking referrals.

• She also thinks the muscle pain is partly to do with this... That I have been "overbreathing" becaase of the pain, and as a result have developed a "breathing pattern disorder". She thinks it's actually rectifying itself, but I may need some physio.

So, back next week for blood tests, a 24 hour ECG (which I am now beginning to believe will be fine) and a stomach ultrasound on the 29th (she is keen to see this, because my abdoman was a bit grumbly). She was absolutely brilliant...

Not sure if there is anything else I can feed back...

Love n stuff xx

Oops posted before I’d finished 🙈
The strange feeling..that’s the only way to describe it! Passed after a couple of hours, it’s just a real dullness, not really down-that part passed quickly..it’s just...nothing 🤷‍♀️Like I can’t really be bothered to talk and feel foggy headed and clumsy again, dropping things etc.
I’ve had it a few times but quite a while ago, the first time was scary as I didn’t know what was happening, now that I recognise it, I know it’s happening and try to focus and just wait for it to pass..so hard to explain, but it feels very calm..quite odd. I’m hoping is nothing serious and is the general fogginess that sometimes comes, which occurred due to period, when many people say symptoms flare.

Also, lower heart rate the past couple of days. I am lay down with my Dd whilst she sleeps, but it keeps dipping to late 40’s, that’s too low, right?

@AndsLee Your doc sounds amazing! So wish mine would sit down and go through it all methodically like that..! I might have to go back.
So glad they seem to be pressing ahead with things and coming to some conclusions to hopefully help 🙏

@Whatnext2018 I recognise the stillness feeling that persists a couple of hours - this was what happened to me yesterday, but I interpreted it as a panic attack as it was like an impending sense of doom . I checked my BPM and it was 45. This is very low, isn't it. Perhaps it's a feeling that comes on with a very low heart rate.
When I mentioned the low bpm to my GP she was not concerned as it was perfectly normal while I was sat in her office.

@Whatnext2018 I get a weird feeling when I go to the supermarket like I can barely h9ld on to what’s going on, then combined with that I get foggy and confused and empty. I can’t remember what it’s called but it’s a real thing. The layout and lighting and sound in shops sets it off. But people generally say it’s a panic attack/depression.
Whereas I think energy use/low blood sugar/ over stimulation is a reasonable explanation.

@TiddleTaddleTat That’s exactly it..a stillness, you’ve put it exactly how I couldn’t. I also thought it was a panic attack the first couple of times I had it, but I don’t think it is? I also feel a sort of sense of doom though too and often feel scared in a way and just focus and wait for it to pass. The last time I had it badly was a couple of months ago after a lovely walk, I started to pace around and wasn’t sure what was happening and if I needed to call an ambulance..but for what exactly 🤷‍♀️That’s interesting about the low heart rate, I didn’t check it during the ‘Episode’ last night, but noticed it today, I’m hoping a low heart rate is ok if only occasionally?

@AndsLee thanks for sharing this - really helpful to see. Do you mind me asking a few questions:

1. what type of consultant did you see, and how did you get the holy grail of a comprehensive all over exam!
2. if it wasn't thrush in your mouth, did she suggest what else it could be?
3. how much omeprazole did she recommend?

My story is that I had possible, but undiagnosed covid in mid-March (mainly gastro presentation). Since then had pain on and off in sternum and was put on 40mg omeprazole...6 weeks later I had a massive gastritis flair up and thought I had bacterial or fungal overgrowth from the omeprazole. Ive has an endoscopy since that was clear but stayed off the omeprazole but lost 10kg (5 more than I would have liked), can't eat much at all and still have the sternum pain and for the last week shortness of breath too. Before seeing your post, I'd wondered if I needed to try the omeprazole again but at a lower dose.

Feeling very tired as I have no energy to do anything and I have a 3 and 7 year old who are suffering from me hardly being able to do anything...

@LetsBeSensible That’s interesting, is this just since having it or before? I was fine when shopping, quite happy, we walked out go load the car and i looked over to the playground that was actually open (many still shut where I am) I mentioned it to dh, who didn’t look keen, then on the drive home I just felt so moody and any questions he asked me seemed too much..I couldn’t be bothered talking 🤷‍♀️When we got home, I had the still feeling for a couple of hours, I still function, getting Dd ready for bed etc, but I feel I’m just holding on, it’s like I’ve almost checked out.

@Whatnext2018 it's really weird isn't it... I also worried at the time that I might need an ambulance, and told DH to keep an eye on me. For context, it's the first time it's happened to me (in nearly 5 months of this), my Bpm has definitely been this low without having an episode like this, and I know my anxiety had been slowly rising, unchecked, prior to it happening. I think it was like being overwhelmed and needing to 'check out', my body telling me I'd had enough. Weird and scary.

Oh, and I did end up taking a couple of kalms (all I have, except for a few beta blockers which I don't think would help). I felt better after taking the kalms - May have been psychosomatic of course.

whatsnext do you think you would have felt better if your partner had not dismissed your suggestion of the park, or do you think this is a wholly physical/mental reaction to covid within you?

@TiddleTaddleTat It is a scary experience, perhaps it is some kind of panic attack then? If anxiety had been rising, im really not sure. I’m sorry, it’s so shit! I’ve read of others with massive anxiety, it’s a big part of it all apparently isn’t it. I just try to keep in mind that’s it’s the illness, another aspect of it, possibly due to inflammation? Like the other parts of the body..it’s the most worrying part though. Keep in mind, it does pass..I had it really bad once where I was quite hysterical to my dh about being scared of leaving my dd etc, this illness is awful. We just have to hold on and hope the symptoms are getting milder each time, this one included 💐
Try not to watch any news or negativity and only focus on the positives, things have improved, it’s just been a longer road than other illnesses.

@KatySun That’s the thing, I’m really not sure? Could it have prompted the lower mood, but even if so..an exaggerated reaction! Or could we have gone, had a great time and it would’ve happened anyway or maybe it wouldn’t at all 🤷‍♀️
I honestly think it must be the illness and it causes it as these aren’t my normal reactions to things and it’s strange how it’s happening during my period when other symptoms have also come back.

I don’t know, but given that you mentioned the park it could have acted as a trigger. Do you keep a diary of symptoms? I never got round to this as it takes all my energy to manage day to day life but it seems to me like it might help identify triggers? I don’t know if it is an exaggerated reaction on top of everything else that has been going on. It used to happen to me with my ex (which may not be a helpful observation). That said, if it is linked to heart rate changes then maybe that is also worth noting for when you next see your GP.

I think our body and mind are just fucked (excuse the language) after the physical and mental stress of being the first long tail Covid.

@whatnext2018 it actually started when I first got me/CFS and it reappears when I’m tired/ill/run down

@LetsBeSensible is it like sensory overload?

@givemeanother

1. Respiratory Consultant. She described herself on introduction as "the one they send difficult cases" to...with a glint in her eyes. I got referred because my GP sent me to a psychiatric nurse, who referred my to the psychiatry dept. The nurse practitioner there (a genius) clocked there was no need for me to be there, and that I was struggling with physical symptoms, so put pressure on my GP to act.

2. She thinks the sensation is to do with reflux. Hence, ENT referral and gastric ultrasound (was already waiting for this).

3. 20mg

:) xxx

@AndsLee thanks and hope it makes a difference for you!

@KatySun Possibly could be a trigger as I’m usually able to deal with these feeling easier on my own, just trying to keep calm through it 🤷‍♀️
@Kitcat122 Yep, definitely fucked!
@LetsBeSensible That’s interesting if it sensory overload..maybe even a trip to the shops can be too much at this stage..other times I’ve been, it’s generally not too bad, in the head type sense.
I’m not sure, I’ve experienced it around four times in the three months, this the least bad of the lot. I think it’s just possibly one of the symptoms that returns, like the clumsiness and dropping things this week or the really sore chest a couple of weeks ago. I’d rather the other body issues than the mind ones though!

@AndsLee
Thanks so much for taking the time to report back. She sounds brilliant! So good to hear a considered, thorough take on what may be going on based on actual examinations. Fingers crossed we can all have referrals to a local Post-Covid clinic soon too.

@LetsBeSensible @Whatnext2018
Absolutely know what you mean by this type of overwhelm, numbness feeling. I get this too going into shops these days. It’s sensory overload plus stressful multitasking, plus flight or fight kicking in without us noticing I think.... given in current social distancing circumstances so much seems like a ‘threat’. It’s all a massive drain emotionally as well as physically, and I’ve never felt so utterly shattered before as experiencing this feeling post-Covid as I think all our reserves are particularly depleted at the moment. Hope you feel a bit better tomorrow.

@Whatnext2018 I totally understand what you mean about this feeling. I get it too, out of nowhere. Got fed up with everyone saying it was anxiety, I have had anxiety for years and this is different- it comes and goes like flicking a switch!

I am still struggling with diarrhoea a week on and whilst the rational part of me knows it must be a bug I have got big panic that it’s a new symptom even after 5 months