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.

Not an important one but, what do you all drink in the morning? I gave up coffee months ago when my heart was racing, switched to green tea as was told it was good for inflammation. Have now been told it’s not good as is high or histamine (or something) so I’ve got rid of that. Just another blah thing getting up and sitting with a glass of water or an Actimel!

*In histamine or aggravates

@Whatnext2018 PG Tips Decaffeinated and a glass of coconut water!

On a different note, how is your heart rate now? I know you said it used to go really low. Mine is now much more stable but is creeping unnaturally lower. Part of me feels relieved it's not spiking all the time any more but I'm now getting anxious that it's regularly sub-60.

I have to be honest, Im on my 2nd coffee.
Its Organic from Morrisons, £.1.49 a bag at the mo!
Ive had an Aeropress in the cupboard for 3 years, never used.

So I have just brewed the coffee, its lovely.
I adore coffee, I dont drink or smoke, haven't had a night out in 8yrs (DC ) so I can't give up my coffee.

Regarding the beach, we are about 10 mins away, we try and go every few days or less at around 08.00-09.00 before it gets busy, just for a walk.

I had tears in my eyes, the day we were allowed to go later in lockdown, I just stood on the sand and was so bloody glad to feel alive after this shitstorm of Covid, it was emotional as the beach is my calm.

I think we got there at 07.30 that day, wheel spinning all the way

@fedupofbed @Whatnext2018
My heart rate still often goes down to 45 during the day. I mentioned this to the GP but she was more concerned about the spikes of 130-150 on just slow moving about the house. Waiting to hear back about cardiology.

@fedupofbed gah, it's so difficult once you start having windows of feeling like your old self not to go for the boom... it feels so good at the time and often I don't feel unwell while I'm overdoing it, only afterwards.
I'm trying to train myself to get back to a 1000 steps a day as a baseline. Not getting to that most days as I'm still in a relapse that started about 2 weeks ago but seeing a little improvement daily.

@fedupofbed It seems to have a few days when it goes really low, it can be 50 when I’m sat watching television at night and even in the 40’s when I’m lay down. I realise this is when most relaxed, but last night when watching a film for example, it was 70’s-80’s first of all then late 50’s later on, it varies so much!
Those days when it goes lower though do worry me, not sure what causes it? I ‘Think’ it was during my period last time and am going to note next week if it’s the same. There was someone else on here experiencing the same, it does freak me out, I’m not sure if we should be consulting the doc about it?

@TiddleTaddleTat Ahh thought it might be you, is it 45 when you’re sitting very relaxed?
Mine can easily go over 100 when doing tasks around the house, I assumed that was normal though 🤷‍♀️
So the doc doesn’t seem worried about low, only high? It does worry me when I see it creeping that low, I’m happy when I’m 60’s, I do think I may have fairly low heart rate naturally though as it’s on average late 50’s
when resting, am hoping that’s normal.
My doc was only concerned back in May/June (when I was very ill and having all my symptoms) as I was sat calmly with him and it was 120, thankfully that didn’t last so long, I remember a couple of weeks with it regularly being 130 when I got up.
Do you all still have the rise when you stand up? Mine seems to go up by around 20, I read a rise of 10 is normal, so still not there yet, better than the 30-40 rise it used to be!

@RelaxedSummer I so miss my coffee too, but am so paranoid of doing anything to make this worse/bring it back 🙈I haven’t drank either since an awful night after one glass of wine on Easter Friday. I so can’t wakt to feel relaxed again for the small things.

I went for an hour long dog walk in the morning yesterday and an hour in the evening with my Dd (her on her bike, me walking) I feel almost like I have excess energy and feel like going for a walk now..am scared this is some kind of false feeling and I’ll pay for it afterwards though, does anyone get this?

Thanks @TiddleTaddleTat I guess if your GP wasn't too worried that's good. And I know you completely understand about the pacing - I think I'm following in your wake! I get such a joyful feeling when I have more energy and just want to be productive. I did 2500 steps yesterday and the day before and am an unholy wreck today. My pacing up until now has been based on not letting my heart rate rise too much (whenever I get above 100 I stop whatever I'm doing. I do everything very slowly!) but this is clearly not enough. I'm glad you're seeing daily improvement again.

@RelaxedSummer ah I love our Aeropress! A nice cup of coffee is high on my list of treats I'm looking forward to when I'm a bit better. Only chocolate is higher! And then wine is number 3 😁.

Oh god, it is me (Ernieshere) I forgot to NC back for this thread!

I don't do well at keeping things seperate do I
There's no real reason, I just that I feel I can be myself on this one!

@Whatnext2018 I did the standing yesterday and it went up by about 40, but quickly went down again within a minute. I can't remember the criteria for POTS but I think it stays high for longer than that, and it's an improvement for me so I'm pleased to see that.
GP is hopefully making a referral to cardiology about the fluctuations in my heart rate, so I would speak to your GP - we don't know the reason at this stage and it's better to report it if you are concerned.

@fedupofbed that's it - two days of higher step count, with a poor nights sleep in between, is what did me in for my latest relapse. Hopefully yours won't last long, try and conserve as much energy as possible. I realise my mistake has been still being quite active even during relapses - making food etc - when really I just need to stay in bed all day sometimes, but that requires someone to care for DD and to bring me food and drinks which isn't always possible!!

And now as I’ve just written that, I’m yawning all over the place, think I’ll just stay in today and make cupcakes (that I can’t eat!) with dd this afternoon.

@fedupofbed the way you explained your current boom / bust situation (physical and mental) was exactly-exactly the same for me about 4-6 weeks ago. It was emotionally draining but after that it’s been noticeable improvement on a weekly basis.

I’m still letting my heart rate go up as high as it wants on my short daily walks and it actually seems to be helping reduce the relentless pounding during the days and nights. Could be unrelated. Not sure how high it’s going because I’ve stopped checking.

Our ongoing road to recovery feels like it’s
exposure therapy — carefully lulling the body and mind back in to a sense of safety and security. Similar to graded exercise therapy but for the mind and body and not requiring such a careful or long approach.

@Whatnext2018 yep ! Any excess energy you have you want to be used for recovery, don't be tempted to 'spend' it yet!

@MillStone that is heartening that you're continuing to progress. I think it's great that you've stopped checking your heart rate too!

Hello!
So have seen the cardiologist. He said he has seen a lot of people with “heart” issues post COVID. Not sure whether transient or not, depends on the person.
I had bloods and urine taken, an ecg, an echocardiogram, and am fitted with a heart rate monitor for a few days. Will also be having a ct scan of the lungs to check for any blood clots or inflammation in the lungs.
Just woke up with feeling of heart fluttering...let’s see what the monitor says!
Will keep updated once I see him again to get all my results.

@findingschools4myboys good to hear you have seen a cardiologist and further investigations going on. I'm hoping to do the same, as my symptoms are mainly felt around my heart and neurological atm.
I suspect it all relates to ongoing inflammation, just wish there was a switch to turn it off.
Has anyone seen any benefits from certain foods/diet? I'm eating more meat and protein generally as it seems to be what I want, I'm trying to avoid sugar including alcohol although have the odd glass of wine here and there.

@TiddleTaddleTat My main heart issue is that it pounds very hard. It's not fast or that slow anymore, it just pounds very noticeably.

I have found the most relief from drinking lots of liquid. The more I drink, the more the pounding reduces(?).

I reckon I drink 7 pints of clear liquid p/day. Mostly herbal tea and water but also the odd Coconut water (for potassium) and B vitamin drinks. I drink a lot in the first few hours of the day and it really seems to help.

For the past few months I noticed it improves throughout the day so I'm now wondering if that related to liquid intake throughout the day.

In other news, the medical outlets are reporting Covid heart complications might be connected to Broken Heart Syndrome.

BHS sounds like it improves with time, but our issues go past the estimated recovery timeframe so maybe it's unrelated to what we're experiencing(?).

www.health.harvard.edu/heart-health/takotsubo-cardiomyopathy-broken-heart-syndrome

Should add - the above link is not especially triggering.

Also BHS does supposedly show up via ECG and echocardiogram so would probably have been diagnosed in 'us' by now!

@MillStone there's also inflammation of the heart and surrounding tissues which can occur after a viral infection. Explains many of my symptoms. Although I'm wary of googling too much as it will panic me most probably.
I've started drinking a lot too, and am seeing the benefit. I usually drink from a water filter but realised how many times I was filling it up per day so have left loads of bottles all around the house so I'm never unable to get to water ! (Eg if resting).

@TiddleTaddleTat that’s a good idea. Liquid really seems to help.

What are your heart issues now and are they slowly improving?

@MillStone palpitations at rest as well as very low heart rate (45) spiking up to 140 on slow moving around. No rhyme or reason to it. I also get pains in my heart area. The pains have probably lessened a bit but heart rate still all over the place. It never stays high or low for long, and I often only know about it from checking the pedometer app later on. I don't seem to notice when it happens

@TiddleTaddleTat Strange there are no obvious triggers. Mine's the same. It was dropping to the low 40s for a while too. I think it still does during sleep -- but apparently this is pretty normal. Hopefully these things will simply fade away in time.

@MillStone I'm guessing it's some sort of arrhythmia? Although on my brief ECG the sinus rhythm was normal. Wish I'd asked for a 24 hr one instead.

I'm still waiting for the results of a 24 hour ECG... Been a couple of weeks now. Must be ok...shrugs

Hello again, I posted a few weeks ago. I thought things were improving but have had a rubbish couple of days. Perhaps I have been overdoing it and this is a crash. But I am also a bit worried about a finding on my abdominal CT, and wondering whether I'm barking up the wrong tree with long covid, and it's something potentially worse. There was a small 'patchy consolidation' on my left lower lobe (left lung) which means I need a re-scan to check that it has 'resolved'. The doc is trying me on a week of amoxicillin in case it's a lingering infection. But now I'm panicking in case it's cancer or something else! He said it didn't look like what they are seeing in post-acute covid lungs, but I had a 'mild' case (and no positive test....) so perhaps it would look different? But every time I think back to the conversation with the chest specialist last week (had to go private to even get this far) I am analysing everything he said and maybe over thinking it all! But today had the low grade temperature back again. So thoroughly fed up on all counts. Sorry, rant over. Good to see some of you are improving, it is helping me refocus!