Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

@andslee Great news. Same with the breathing, had a bit of a relapse over the weekend, and the palpitations seem to be back. Also struggled with sleep last night - It could be slight anxiety although I don’t like attributing anything to it. I had 5 nights of broken or little sleep Tuesday to Saturday last week with a poorly dog and I don’t think that helped. I haven’t been touch wood fatigued and walked 10000 steps the last two days. Fingers still stiff and painful in the mornings and still bit of nausea and toilet rush in the mornings. Feeling a bit stuck in limbo.

@Ernieshere What did they say on GMB? Anything optimistic about recovery?

Im going to rewatch it, as DD obviously spoke all the way through it

I caught the jist, that there is little support.
A professor was on as well, he is completing a study, I will look him up.

Professor Rob Copeland.

They had 3 different patients on.

1 was in ITU and now has PTSD & cognitive issues.

1 was like us, struggled at home and is still suffering greatly.

Didn't hear the other woman.

@Egghead68 you sound like you are on the mend too! Great news! I am so glad because you have had such a time of it...

@moodgie
I hear you with the limbo. I wake up breathing perfectly fine, then suddenly that slight wheeze is there. I am worriec it's lung related now.

However...
Got a phone call yesterday from the mental health team. The CPN has arranged an outpatient appointment for me...at the hospital rather than the local mental health facility. She's going to meet me there with a nurse practitioner. I think...they believe my symptoms are real! I am so relieved...xx

@andslee My GP definitely believes me I think, he say he has heard the same from people who have actually tested positive. He thinks it is all post viral.

I meant to post this on here last week. Throughout my initial illness and all the post-viral stuff I would have said that it had no effect on my brain. That I didn't really have 'fogginess' or inability to concentrate. Then nearly two weeks ago I was doing some 'homeschooling' stuff with DS and for the first time in months, I was interested. I felt like my brain had switched back on. Looking back, I can see that since I was sick I was actually just extremely disinterested in everything. I had no real enthusiasm or spark and now I just feel much sharper and like the lights in my brain have been turned back on.

With those with palpitations, has anyone told they are post-viral?

*been told

Hi all, haven’t been on for a little while as have had a manic work phase. It’s great to see lots of people feeling a bit better although the relapses seem to persist for many. I’ve had a pretty good few days over the last week or so - bracing myself in case of relapse but hoping if so symptoms will become more niggly than debilitating. On my last bad spell it was my heart that worried me the most but had an ECG which was normal so fingers crossed (although of course I wasn’t experiencing the symptoms at the time!). My last GP call was rubbish though as she glossed over the history of my symptoms (including the chest X-ray of infection after 6 weeks of SOB, persistent fever etc) and said I might have had a virus but prob not Covid as I had negative antibody test - she knew nothing of people with positive swabs having negative antibodies, nor low antibody levels in females etc - and my remaining symptoms just due to mild anaemia. I’m concerned that if they don’t acknowledge covid in my records if there are knock on issues I might not get taken seriously. I’m tempted to send my DH for an antibody test as he had only very mild symptoms for 2/3 days so might be more likely to test positive, which would confirm, but equally mild infection might mean he doesn’t after 3 months.

This might be a bit niche and TMI but I am on continuous HRT but have had breast pain since 1st June and today have got a period which really shouldn’t happen (have been on HRT for nearly a year). Does anyone think this all sounds Covid related? I know it can mess with hormones.

Hello everyone, good to hear from those who are recovering and sorry for all of us who are still in the endless cycle!

I've not posted much over the last few days as I just don't feel I have anything to add - nothing is changing for me, and I don't want to be the voice of negativity all the time. I'm just posting a quick update... I'm regularly in touch with 2 GPs, both who have been supportive but one is now fully onboard and conferring with a network of GPs about my ongoing symptoms. It's so good, I just feel believed. My last blood test (ANA) indicated there might be a (small) chance of an autoimmune problem. I'm having follow up tests on Monday, which will include testing for connective tissue disorder, which I understand includes vasculitis. I finally feel like I'm getting somewhere. Obviously I don't want this to be the case, but at least I can look into treatment options if it is.

@Egghead68 yes that sounds very Covid-y to me! My periods were on the way out before this (maybe one every 3-6 months if that) and they've since returned every 3-4 weeks - though the last one was a bit later and lighter. I've had more periods during this virus than I've had in the last 2 years!

@fedupofbed, you must be relieved that you're finally getting somewhere medically. Hopefully the tests will shed more light on what could be going on. Hope you don't have to wait too long for them.

@Toptottie24, how are you getting on now?

@fedofupbed thank you. This is such an odd illness. I really hope you don’t have an autoimmune disorder. It’s really good you have a supportive GP and are being thoroughly investigated though.

Just back from a 10500 step round trip to the hospital for my 24 hr ECG (no taxis available). Loads of staff wandering round without masks. Doing their bit for herd immunity I guess...

Quick update from me as catching up on the thread!

15 weeks today for me. MAin issue is now fatigue. Some days relatively bad and others less so. Generally functioning with regular rest but not really enjoying never feeling ‘good’ If that makes sense.

Most days doing between 4-7k steps. Some work (v little), some house work and childcare that’s it really. I just feel very tired!

Also had a small relapse (ore period) of rib aches, palpitations and headache. More mild than before but annoying.

Biggest issue for me now is I can feel seem to increase my activity as I’m just knackered!

Also having follow up bloods tomorrow and 25 Hr ECG plus stress echo in a couple of weeks. Hoping they will be clear!

Good wishes to you all on here, know it’s awful!

Hi ya,
The fatigue is back!! 😡 so spent most of the last few days sleeping.
Breathing hasn’t been that good.
Doctor has asked me to monitor my breathing with the peak flow monitor, so I’ve done that and given him the readings.
Might have to see a Respiratory consultant.
Hope you are well

Hope your tests go well tomorrow @Longshot. This just goes and and on doesn’t it...

@Toptottie24 sorry about the fatigue and breathing.

@toptottie24 What is yoir breathing like?

It’s driving me mad now, it’s not just letting up!! Just want to wake up the morning and not have feel tired or breathlessness.
How are you doing. X

@toptottie24 Mine is like breathing dust still at times, alternating with scratch windpipe.
Not breathlessness as such.

I’m getting breathless doing simple things, like showering or hanging the washing out. When I walk my dog I’m having to stop and get my breath. I’m not gasping or anything like that so that’s good. Just don’t know tbh, I’m wondering if I’ve got scarring of the lungs, even though all X-rays ect are ok, this virus is definitely a mystery that’s for sure.
The inhalers I’m on are helping but it gives me the shakes.

Hi everyone, thanks for the updates it's lovely to hear other peoples symptoms. Makes it less lonely (although I wish none of us had to still be here 😩). I have been back to work full time for 3 weeks now. Work with vulnerable children in school so challenging and busy. At first I was exhausted but coping better now. Just still have this blasted chest pain and sob. It comes and goes through the day. For example, woke up this morning with no symptoms at all, then at work suddenly get very slight pain. Then on my 15min easy walk home burning chest and breathless. I feel better but am stuck at this point not getting any better.

Anyone else have a burning windpipe and chest again? I've no SOB but my breastbone is sore again and my windpipe feels like it's been scraped inside out. Day 103. Yesterday and Monday I did 10k steps and felt OK.

If you have the burning windpipe, have you found anything that helps?

That’s week 13 done, and past the 100 day mark. Just watched the GMB piece, I really hope we get some recognition. There is a journal from the Fail online on the FB group doing a piece too (she’s had covid)