COVID Lungs 8wks plus

[baroqueandblue]

Saw the previous thread is almost full. Hope I've not duplicated a new thread! And I might not be the best person to be custodian of this one, so feel free someone else to start a replacement and I'll get this deleted. Otherwise -

Here we all are, at least 56 days plus 😕

Ps I was referred by a GP who has been amazing in the past. Last time I called the surgery I requested a call back from that GP and sent an email prior to the call. They called me down that day for a checkup which was amazing after 7 weeks of telephone calls.

Morning everyone.

@alittleprivacy great news! You are a comfort to us all.

@Needsomegoodies love the new user name. Good also that you think you're generally improving, but sorry about the random new symptoms. I'm noticing a general trajectory on this thread... many of us now seem to be getting similar odd things.... rashes, tingles, etc.

@MillStone thank you soooooo much for filling us in, that's really helpful especially as I I don't have a specialist near me so no prospect of being referred.

Sadly I'm still in full relapse mode today (I'd say since Sunday). My SOB is worse so back in the omeprazole in case it's GERD related. And just looking at my hands - bright red at fingertips and base of thumb?! It's my next chiropractor appointment later so we'll see how that goes.

@Moodgie my GP got in touch again. He says to assume that the windpipe thing is another part of the overall picture, to monitor it, and as long as we can swallow okay try not to worry too much. Incidentally, I've also been in touch with someone from America (slack again) who had this as a predominant symptom for the whole illness. She had loads of tests done but nothing sinister was picked up related to this and she is eventually through it.

An expert on This Morning saying how people under 45 generally have mild symptoms or are asymptomatic makes me want to cry. When are we going to be noticed?

@fedupofbed thank you for the update!

Just to update that my clinic blood draw IgG test was negative. I still think I had/have covid.

Really sorry about your relapse today @fedupofbed.

I am reasonably OK today touch wood apart from high heart rate and chest pain (day 74/75)

That was a quick turnaround @Egghead68 . Ga sorry it was negative, but yes I think you've undoubtedly had it and we're just still in the early days of understanding how our bodies fight this. I'm glad you seemed to have managed the walk okay and hope you have a restful day.

Thanks @fedupofbed. It was an impressive service all round. Hope your relapse is short-lived.

Hello everybody in the middle of my week 10.
I’m still mainly bed and sofa bound. The beta blockers dropped my blood pressure too low so I have tachycardia again.
I’m feeling cold and shaky. The chest pain is there, the brain fog is back along with dizziness and tinnitus and I can’t stop crying.
Well meaning folks with some awareness keep telling me people recover after 12 weeks.
I just can’t see that happening at all. I’ve gone from 1000 steps a day to 300. And I haven’t left the house in over a week.

@Crayfishforyou, offering sympathy. Although my breathing is getting deeper, I too feel worse than I did in early days with this chest/lung/throat pain. Off to have a CV swab (again) so I can access A and E without being sent to the red zone.

@MillStone, I'm so glad you were able to access all those tests but very envious too. My GP said this morning that it's A and E or nothing basically. If my chest X-ray and bloods are clear, they will probably send me packing again! I can't seem to get beyond this 'gatekeeping' for more specialist tests ie; vascular/endoscopic referrals.

Oh @Crayfishforyou I'm so sorry. The relapses are shocking and awful. Have a hand hold and know we are here to listen x

@Lightsabre hey, hope you’re feeling bright.

Thanks and I’m sorry, that’s unfair and frustrating.

Can you request a referral or self refer to a specific department within the hospital?

@Crayfishforyou sorry, stay strong

Thanks @MillStone.

@fedupofbed, 💐 for you. We just have to rest and ride it out.

Can I ask if anyone else is anxious about returning to work? I have been off for over 7 weeks now for sick leave purposes (they didn't count the first two weeks). Usually, when someone is ill, they get referred, seen etc and diagnosed. As this cant happen at the moment, does anyone know how employers are viewing this. I'm a public sector worker.

@Millstone that is a great service! My local NHS hospital in London is supposedly excellent for infectious diseases but I’ve not been offered anything like that. If you don’t mind posting them I’d be really interested to hear the results of your investigations. I am hoping for cardiac tests but not holding my breath.

@Crayfishforyou sympathies. I think my weeks 9 and/or 10 were like that (bar the tinnitus). It’s so depressing relapsing at such a late stage and certainly made me wonder whether I would/will ever recover. I have been a bit brighter the last few days (I’m day 74). I hope this happens for you too. I can’t help but look back to around day 39 though when I was well enough to do 30 mins on the exercise bike. I’m certainly far from that at the moment!

@Lightsabre I’m shielding but if I weren’t I think I would need to see occ health (I am public sector) and follow their advice regarding a phased return. There will be others in your shoes, I imagine.

@Egghead68 yes sure I’ll share my results when I know.

I See you mentioned day 39 and your static bike. I was doing 2 daily gentle walks around the local park at around day 40. Wouldn’t fancy 1 at the moment, even though in Many ways I feel stronger and much better now.

I am willing to believe I might have had an adenovirus rather than covid, now I’ve read about the cardiac problems it can cause.

In think it would be amazing coincidence to catch this for the first time during an outbreak of another virus though.

This article describes adenovirus14 which sounds quite like what some of us have have, although the article does not mention the relapsing remitting timecourse and also says it is very rare:
www.medicinenet.com/killer_cold_virus_adenovirus_infection_ad14/article.htm#

@Egghead68 I think the opinion is that the antibody tests aren't showing everyone so it seems likely you had cv. Did you lose taste/smell?

@Lightsabre or anyone looking to return to work- ideally you should be assessed by Occupational Health before you return. You should ask your manager to refer you. Many OH’s used telephone appointments for staff too ill to come in, so I’d hope that’s what they are doing now.

If you’re due back but have not been assessed by OH then speak to your GP and ask for a fit note for a phased return. In our situation I’d say ask for it to last at least a month, amended hours, amended workload and work from home. And get the GP to write that an OH referral should be considered.

If work say they can’t do the adjustments then you’re not well enough to work.

@LetsBeSensible thanks for the info on phased return to work. I'm considering my options after being signed off for 2 weeks. I initially had 7 days for self isolation back in March, then worked (am only part time in this role) but totally wore myself out while still recovering. I am fully home based now but it's an incredibly stressful job.
I'm still very fatigued so not sure whether to request a further period of being signed off or to see if a phased return was possible.

Thanks @LetsBeSensible and @Egghead68. I'm not anywhere near fit enough to return even for a few hours yet but the lack of medical tests or clinical services being open worries me as it will take a lot longer to get any kind of diagnosis and treatment if this drags on.

Hi all
Haven’t been on for a while but have been thinking of you all & wishing you well. I’m now on week 10 and am pleased to report that I feel 99% like myself again. It’s been a slow process though, and I’m very grateful that I’ve been allowed to WFH, to help recover gently.
For what it’s worth, I did one of the Blue Horizon antibody tests at day 25ish and it (eventually) came back negative. Like @Egghead68 the negative test means I’m now wondering if I had Adenovirus (due to the heart palpitations) but equally, I can’t help but query the test result. My MIL had died with Covid-19 and five days after we’d been in to see her & pay our last respects, I fell ill; it feels like too much of a coincidence. Then again, my MIL’s Covid-19 diagnosis was a clinical one - although she’d tested negative on the PCR test, the hospital consultant told us the tests were only 65% sensitive and he was confident it was Covid. We’ll never know...

@UncomfortableBadger , really good to hear from you and so pleased you're nearly there! Sorry to hear about your Mil though.

I think we are all waiting for the Roche test now....

@godhelpusall I had the dry cough and breathing difficulties (plus most of the weird symptoms we have all documented) but no proper fever (hot and cold flushed but temp only 1 degree up) my altered sense of taste/smell (metallic-faeces like) lasted only half a day. So I only properly had one of the government’s 3 diagnostic symptoms (they say any one of them raises suspicions though).