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

@MillStone Gah that's a long time to wait. Have you chased it up? I suppose it probably is negative if you haven't heard, or maybe they are behind? I haven't heard anything about the 24hr ECG.

The physio is private - quite reasonable - I will continue to see her as long as I can afford.

Terrible night last night. Awake from 3.45am. Just - awake. I got up , ate, drank, read a book etc and tried to return to bed but gave up at 6am and went downstairs to cuddle the cat. Feeling appalling today as would be expected.

@TiddleTaddleTat tried to no avail. Sorry about the sleep. There’s. I escape from this sometimes!

Just noticed an interesting article on hearing loss from Covid. Along with many others I’ve had left ear pain and tinnitus for nearly 7 months. This article is talking about extremes... but the mention of nerve inflammation was interesting.

www.theguardian.com/world/2020/oct/13/covid-may-cause-sudden-permanent-hearing-loss-uk-study

@MillStone interesting... I also get left ear pain and still have tinnitus. I think I'm being referred to ENT as part of the post covid referral process.

I've managed to pick up a cold!!! I feel crappy but I read somewhere that for people with CFS / ME getting a cold is cause for celebration as it indicates the immune response is functioning well. Don't know if this is a load of nonsense but I'll take it as good news after my crappy day.

Hello everyone.

A belated thank you to those who have reported back. Glad that there has been enough improvement for some of you to get back to full time work but it does sound incredibly hard when you're still experiencing fatigue and lingering symptoms. @Moodgie I'm sorry to hear you're having a tough time, though encouraged by your walking and hiking boots! One day we will run again 💪. That is my goal. My parents aren't abroad but they're the other side of the country and haven't seen them since last year either, so understand how you're feeling, especially as there doesn't seem to be any change in sight.

@TiddleTaddleTat great that you spoke with a specialist physio. Is she giving you any specific advice on pacing? The specialist I spoke to also asked lots of questions about hypermobility (which I don't have). I'm sorry you're having such a rubbish day. Do you think it's anything to do with over exerting yourself a few days ago, which maybe then had an effect on your sleep? Or completely unrelated as you have a cold?!

I've not had a great day either - I'm more tired than usual, my heart rate is higher and my breathing has got worse again. I think it's because of overdoing it at the weekend (lunch at a friend's then an optician appointment later on the same day) but it's badly timed with starting work. Work itself felt okay. I didn't feel like I was overdoing it or getting stressed, but I did feel incredibly slow and unproductive, like wading through treacle!

Hi everyone, hope everyone is continuing to slowly recover. Those with relapses I hope they are shortening. I am working at school full time. My chest continues to get better very very slowly. I still get intermittent very mild pain but sob is almost non existent now. I'm not running yet but I am walking alot and doing very light strength training. Had a cold that put me back but that was only temporary.

@fedupofbed Running is my goal too. Next year. Sorry about you not being able to see your parents. I want to be with them so badly at the moment.
I had to take a day off today, felt tight chested and just not right with breathing and tired. Which in turn made me crumble mentally as well. It’s been so tough. Sending love to everyone who is struggling.
It is the 6th week of being back to work and I think it has maybe been too much hence the symptoms.

To those working in school - are you wearing masks/visors?

@fedupofbed hmm, no I think the poor sleep was down to a stressful work day (my heart got very fast during a difficult meeting; I think stress plus being seated is a terrible combination for me). Didn't feel as fatigued throughout the day as expected, mainly sluggish due to the cold symptoms.

Advice on pacing was to take things super slowly and continue with scheduled rests where I do nothing at all. As my presentation is most aligned with OI/POTS and adrenal insufficiency, interventions are mainly around hydration, compression garments, keeping blood sugar stable, improving sleep, supine exercises initially just stretching until I'm cleared of myocarditis or pericarditis by cardiology.

@Moodgie I'm sorry to hear you're having an increase in symptoms. It sounds like the right decision to step away from work today. I am increasingly recognising how much we need to self advocate for our right to heal and it is really tough to do this in the midst of all the pressures we face. Hope you feel some improvement soon

Hi @Moodgie I am working in school at primary level No masks or visors just the supposed social distancing HaHa. I an however exhausted and in bed most nights by 9.00 to 9.30 Moods all over the place and sleep disturbed most nights. Intermittent cough back the more tired I get Some sore throats at times and then it goes Tight chest when at my most exhausted and the ache is back under my shoulder blades. and the front of my chest. Finding it very hard to surface in morning Feel really groggy and takes along time for me to get going. However these are all niggles in comparison to how I felt in March and April. All the things I used to do easily are now having to be rethought so trying to pace myself Just feel over whelmed at times and need a break to recover and re balance and move forward. Not sad or anxious but just listening to my body more to feel more comfortable and not so exhausted
Glad to see progress in some pf you and sorry to hear of some of thr relapses. We are moving forward and improving but slowly
Wishing you all well

Hey all, I'm a first time poster here on this thread but as a covid 'survivor' am interested to know who lost their sense of smell due to the virus, and how that sense is now? X

New article today - mentions 7 months and 4 types of long covid. Are we the 4th type? apple.news/Am0O-oqK-QvWZPA9D_88o6w

Hi @whereisthejoy I think smell is something most people lost and then got back, most notable was the phantom smells - cigarettes, burning, that sort of thing.
@Moodgie I saw that and my heart sank. I think the fatigue and the fluctuations are related.or you can have both. Splitting them up probably means less treatment. Easy to fob me off with “just fatigue”

Had another poor nights sleep last night - awake about 2 hours from 3.15 though did manage to drop off again. I think dehydration is the cause of my pounding heart and needing to get blood moving after a few hours, common in pots apparently.
My period is also due and looking back at Cardiogram I notice exactly the same pattern last month with sleep disturbance, increased resting HR and temperature just before period.

@whereisthejoy I lost my sense of smell and taste for about a month. Didn’t get this symptom until about month 2 of Covid. Both senses gradually came back, although I am now at month 7 smelling cigarette smoke intermittently.

@Moodgie hi! No mask or visor for me, I work with pupils with behaviour issues so would get ripped off my face in 5 seconds flat. Although no PPE policy at my school 🙄.
I lost smell, came back intermittently and I still get phantom smells.

Thank you for the replies. What a shitty year this has been - and to actually get covid on top of it - well! Troopers.

Praying daily for everyone's health and just so amazed at how far you've all come. My friend's sister is just 24 with long covid.

I am only a couple of weeks post virus now so I hope you don't mind me hopping onto your thread.

Love to all x

So disheartened today. I basically thought I was nearly fine since August. The most annoying thing was this discomfort in my throat which I just tried not to think about, but now it seems it is lower down in my upper chest. Hard to describe, wondering maybe reflux. Does it sound familiar to anyone?

Hi all,
Hope everyone’s doing better.
I’m just past 7 months and have had a few bad weeks really.
My period was 11 days late, but was the first time it feels like a ‘Proper’ period with blood flow and length of time etc. I took this as a good sign my body may be returning to normal a small amount, but I’ve felt horrendous the last two days, still sneezing all over the place, sore sinuses, strange feeling in throat and tight chest as usual, v bad stomach issues and aches, swollen throat and general ‘Flu like’ feeling..like back at the start really. Have read that many people were feeling bad at the 7 month mark, anyone else?
I’ve not had a symptom free day since the start, but some much much better days until a few weeks ago..cannot understand why this keeps returning. I’m on anti histamines but they make zero difference. I’ve read a lot is due to higher histamine levels but mine tablets don’t seem to make a difference.

Hi it's been a while since I have been on here, I had a big relapse about a month ago when I caught a cold and early this week caught another cold and have a headache runny nose clogged sinuses. My daughter had a positive case in her class so we tested and all tested negative. I won't lie I am still worried about developing a 'cold' after my daughter's exposure as Despite the negative tests. I don't know if I will ever get over the worries.

@pinkoneblueone was wondering how you were getting on! Sorry it’s not great.

Don't get me wrong there have been many good points where I was at about 90% but in this last month the stress of the kids going back to school caused me a huge panic attack and then into a relapse I was almost over that relapse when we caught the cold.

I have read a few updates and see that colds have triggered relapses for a few of you which has helped to reassure me a bit.

Hello everyone!
I’m glad people seem to be getting slowly better.
I’m asleep for about 3 days of the week but my relapses seem to be mainly underarm and chest pain with fatigue. They’ve lost their potency a bit.
On good days I can do a little yoga.
Is anyone else worrying about money? My place of work is still closed but I can’t apply for anything else for the mean time as I’m simply not well enough to work. If I clean the bathroom I spend the next day asleep!

Hi @Crayfishforyou sounds like progress

It’s a terrible situation. I wonder if the government will recognise it and offer support. There are 60k odd people in this situation now so who knows what it’ll become after this 2nd wave.