Covid lungs thread 18 weeks plus - thread 2

[LetsBeSensible]

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

@Criticallythinking I’m so sorry - we all know exactly how you feel. It’s also made so much worse by bad sleep isn’t it.

It’s amazing that you’re trying the phased return, is there any way of prolonging the ‘phased’ nature of it more and reducing the days a bit? Especially if you’re fighting off a cold.

I had the same tickly chest last week with the sore throat and a bit of a cough. It also really freaked me out, but it did go again after a couple of days rest. I am also putting it down to dysfunctional immune system. If it’s not firing properly, you need even more rest, healthy food and reduced stress than you think you do. How sympathetic is your manager? Can you delay starting this week till Wednesday say?

Sending warm wishes 💪💐

I'm sorry @Criticallythinking . I think our bodies are completely stressed and over reacting to anything and everything. I think I make it worse for myself by worrying and over thinking - so frustrating as I know staying calm and positive is so much better but that's really difficult. Sending love to you.

Can you work from home at all or lessen the hours? I met with Occupational Health at the end of last week and have agreed a trial phased return beginning with a couple of hours later this week (all from home). I'm terrified. I haven't looked at anything work related for 7 months. But I'm hoping the gradual return to 'normal' life will help my recovery.

The other thing I haven't done yet is drive. I think I may be ready now but so terrified of relapsing.

@Whatapickle78 thank you, I should have used that company instead of the one that had all the bad reviews ( that I only read after I'd ordered)!! I hope your back pain is better today.

@Whatapickle78 @fedupofbed thanks so much for your support. Glad to hear others have had similar. I agree our immune systems don’t know if they are coming or going. I’m hoping over time they will rearrange themselves. I’ve had periods in my life before where I’ve had lots of illnesses in short succession and it has passed.

Work are great, I work from home and only have to do 10 hours this week. Managed just over an hour this morning and can do more towards the end of the week rather than this end. Can’t decide how unwell I feel or how much is anxiety about symptoms and relapse! This whole letting it be business is hard!

@Whatapickle78 when I said glad to hear other have had similar didn’t mean glad you were unwell! Just glad I’m not alone x

This is out in the news today
‘
Long Covid 'could be bigger public health problem' than deaths, says thinktank

The Tony Blair Institute for Global Change thinktank has published a paper (pdf) claiming that long Covid (the term for people who suffer long-term after-effects after getting infected) could turn out to be a bigger public health problem than the straightforward Covid death toll.’
From Tony Blair Institute
institute.global/policy/long-covid-reviewing-science-and-assessing-risk

@Criticallythinking
Don’t worry, I know exactly what you mean!!
Glad to hear your work are sympathetic. Hope you’re feeling better soon xx

Have people been finding if asthma preventer meds help with breathing issues?
I feel a bit better since restarting them (used to take until about 20). But hard to know asbit comes and goes anyway

@fedupofbed I meant to say that I hope your return to work goes well. Like you I have done it to try and get some normality back. Or find a new normal as it might be.

@Whatapickle78 great article thank you for sharing

@Whatapickle78 thanks for sharing the link. I do think that the public health fallout from the pandemic is going to be massive. So many of those having long term symptoms seem to be previously healthy and fit. I see the numbers going up at the moment and I despair really, so many are not taking it seriously still. So many of them will still be unwell in 1,3,6,12? Months time and have to go through all that we've been through. It's been tough for us being the first cohort and having to shout to make our voices heard, it will help those who get ill subsequently though.

So I'm booked in for a short synacthen test for adrenal insufficiency, with the endocrine unit. Has anyone else had this looked at? I've also got my 24h ECG on Thursday. Unfortunately it's not going to cover my work period when I have lots of stress for free - I'll need to try and artificially create situations that cause my heart to act up. Will try and make the preceding day as busy as possible, not wear the compression stockings, and skip the electrolytes.

As an aside - compression stockings seem to be helping - slightly. Heart rate doesn't get quite as high when I'm wearing them, and I feel I can do more. However I'm a bit wiped out today after a higher than usual step count yesterday, so I still need to play everything steady and gradual.

Just found this paper on SARS (CoV1) which includes a little about adrenal changes - low cortisol and associated symptoms - which resolved over time. pmj.bmj.com/content/postgradmedj/early/2020/06/11/postgradmedj-2020-137934.full.pdf

Hi all,
Hope everyone’s doing ok (well as ok as we can be)
So sorry @Criticallythinking that you’re feeling so crappy, when it hits badly it just takes you right back all over again in a way doesn’t it, it’s the relentless of it all. You are not alone in this, so many of us feeling the same, it takes a lot of positivity and strength to pick yourself up when feeling better and then it comes back again 💐 hope you are feeling a little better now.

The strange taste in the mouth lasted one whole day then disappeared (for now at least)
I’m day 34 of my cycle and still no period (I’m average 29 days) so I’m a bit worried about that. Strange pulling pain in my right leg..again, have had this the whole way through but get so paranoid about clots.
Still with the tight chest at times and very wooly headed today, not dizzy but literally getting so many words mixed up or calling things the wrong word then correcting myself when chatting to my Dd throughout the day.

Anyone else ever this late with their period or skipped it entirely? Mine have been shorter and very light throughout this, but I don’t think I skipped one altogether.

www.bbc.co.uk/news/health-54296223

'Long Covid': Why are some people not recovering?

I found this article a bit stressful to read so I’m in two minds but posting anyway in case it’s helpful for someone else to read. Talks about possible long term (years ahead) issues but while understandably not actually being able to predict how likely.

@Fishflakes thanks for posting. I am also in two minds about these kind of articles. Great that they raise awareness but I don’t know how much speculating from various medics and scientists helps us really and it ends up scaring us. We need good solid research (I am a health researcher so would say that) starting now and it can be done so let’s hope the funders see this as important.
There was a paper in Science yesterday which was about life threatening Covid but the principles might apply to us. Essentially the immune system attacks itself everytime we are exposed to something infectious, so long after Covid has gone it keeps going. I have to say I didn’t understand the paper but my DH explained, as he has been reading up on anything that can help (he is a doc and scientist).
Hopefully eventually the pieces will come together and we will know more??

Thanks so much @Whatnext2018 I am definitely having a hard time of it with what is probably just a piddling cold to everyone else! It’s just patience isn’t it and waiting for this latest storm to pass, probably slowly!

I have had problems with my cycle too and I have a mirena IUD so normally I am regular as clockwork and have a light period. When I had a stomach bug I had a two week heavy period and since then they have been non existent but my symptoms have always been worse in the build up.

I also get the word mix up thing and usually in run up to period and/or when getting unwell. It’s so frustrating!

Hope things improve for you today.

Hello all

Sorry to read that some of you are feeling rubbish... xxx

My period started last week with no issues, although I am aware that this is the end of my third 8 week cycle, so I wondered if anything would happen. It has...

Over the weekend I took an allergic reaction to peanut butter. I have never been allergic to peanut butter before! Nonetheless, there we go. Symptoms were a breathlessness, burny wrists and a bit of a blurry head. Since then the "breathing through dust" shenanigans has begun again... So... I am wondering if this has been to do with histamine levels all along, because I have to say my GERD issues seem to have resolved for the most part. I can't remember when I last had heartburn! My idea is to speak to the GP this week, and suggest coming off the Omeprazole, then continuing with antihistamines alone. I'm also going to tweak my diet and see if that makes a difference. In my gut, I have always felt this is histamine based, and whereas I do feel there was a bit of acid reflux in play...I'm unconvinced it was the sole culprit.

Also, I have a chest xray this week, because I have a lump on my collarbone. Brilliant.

I have Mirena too and normally no period signs at all. Since COVID in March I have erratic heavy spotting. I should log it probably because my memory is also poor so I don’t know if it forms any kind of cycle now. Hard to know given I am mid forties what could be normal peri meno changes.

Anyway wishing everyone the best for getting past this.

Hi all just checking up/checking in. Weird mega energy is here still, am trying to do housework then rest on and off. I feel I could happily trek up a mountain. It’s so odd.
@AndsLee hope all goes well. The histamine is part of the MAST cell activation theory and there’s an app doing research on whether covid causes MAST histamine thingy problems, I dunno I wasn’t paying attention but you can google it.
@Criticallythinking hope you feel brighter @Fishflakes hiya!

@AndsLee
So sorry to hear about the allergic reaction! That must have been really scary. Good luck with the GP this week. X

I had a a nasty cold and cough and sore throat and all my breathlessness and pain came back. But as soon as the cold was better my chest symptoms went again. I think I may just have a weak chest this winter.

Thanks @LetsBeSensible I ended up losing it a bit yesterday! I developed a cough earlier in the week. Fortunately I was able to get a test via my DH work and it was negative. Obvious today that I have a cold. But my symptoms are always so weird- yesterday I had the burning feeling my chest all day and felt rough. Sounds like @Kitcat122 had a similar thing.

Fed up of one thing after another and the constant fear of getting Covid again. A friend told me a story about someone who got reinfected and it really upset me!

Anyway. Got my first CBT session this morning so will see if that helps...

@Kitcat122 sorry to hear you were poorly and I’m glad it cleared up

@Criticallythinking I think they think (touchwood) it’s unlikely we’ll catch it again? I hope!

I honestly feel like the tight chest and breathing through dust thing, sore on exertion such as singing, getting stressed etc isn’t easing at all. It’s the one thing that’s always there..x rays show nothing 🤷🏻‍♀️

Still no period-37 days now in this cycle

Oh and the strange pulled feeling in the bottom of the legs, mainly around the ankles

Hi all, posted way back as got covid in March, largely recovered and back to work and full energy outlay (albeit not as fit) but have had a lingering couple of things that have developed lately and came on to say @Andslee I resonate with your experience of allergic response.
I have post Covid been diagnosed with GERD and post nasal drip and just had antibiotics for sinusitis, after getting copious amounts of mucous daily from my throat (of unknown origin) and speaking to a video call doctor (not from my surgery) - then after taking the penicillin for sinusitis, my symptoms remain, but it now seems I can separate out my symptoms, and I noticed that after a mucous ‘attack’ I get very loud sulphurous burps for half hour or more - when I was on omeprazole this would result in acid sick too, but I’ve taken myself off them and now it doesn’t- my point being first I get inflammation (mucous and bloating) and then I can tell I’m having a gastric reaction. Having been diagnosed as having IBS 7 years ago for extreme bloating and gas I recognise the gastric part, although it hasn’t been around for a few years, however I now am seeing a pattern that it’s gluten that is setting me off (fuzzy dry nostrils, mucous, skin rash, fatigue, lethargic brain and then bloating and gas). Possible I’ve always been gluten intolerant (and
Misdiagnosed IBS) but the symptoms are now too severe to ignore which pre covid wasn’t the case. So definitely see an allergy link.

Also been diagnosed via blood with hypothyroidism (never had before) high cholesterol (always had hereditary form) and I think over my last period judging by fingernails and eyes I went anaemia- all these things are known contemporaries of gluten intolerance/coeliac, just sharing in case anyone recognises this in themselves and also to say like andslee I’ve developed a new or worsened allergy. I too am taking an anti histamine every day and following a gluten free diet now.

@Whatnext2018 my last cycle went from 26 days to 38 days around the issues I’m still having detailed above, normally regular - although possibly in peri menopause too,

Dawn