Covid lungs thread 18 weeks plus - thread 2

(1000 Posts)
LetsBeSensible Wed 23-Sep-20 10:16:11

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 - youtu.be/CIpXGB-8DWI An introduction to the CRESTA team and fatigue
Video 2 - youtu.be/hIGYdjcZi7M Managing your energy and daily activity
Video 3 - youtu.be/nIcOVUqQMfI Looking after yourself during your recovery
Video 4: - youtu.be/HNFfrVUpdK0 Activity and fatigue
Video 5: - youtu.be/6FueYwVeI3w Question & Answer session on common issues for Covid-19 recovery

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LetsBeSensible Wed 23-Sep-20 10:18:28

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MillStone Wed 23-Sep-20 10:25:15

Thanks @LetsBeSensible

stayathomegardener Wed 23-Sep-20 10:25:46

Thank you.

seriouslynonames Wed 23-Sep-20 10:28:13

Thank you!

LetsBeSensible Wed 23-Sep-20 10:44:43

@fedupofbed @andslee @tiddletaddletat @criticallythinking @emoojoo @beautifulpark @kitcat122 @
@emoojoo @fishflakes @godhelpusall @moodgie @godhelpusall
@porcupineinwaiting

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fedupofbed Wed 23-Sep-20 10:53:37

Thank you @LetsBeSensible especially for taking the time to post all the useful resources in one place. 🙏🏻

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TiddleTaddleTat Wed 23-Sep-20 11:06:34

Thank you !

emoojoo Wed 23-Sep-20 11:51:21

@LetsBeSensible thank you very much for the resources and new thread smile

godhelpusall Wed 23-Sep-20 12:01:58

I have a chest infection from a cold I think. I feel so fed up.

Criticallythinking Wed 23-Sep-20 12:16:34

Thank you

AndsLee Wed 23-Sep-20 12:48:38

@LetsBeSensible Thank you for all of this! smile xxx

LetsBeSensible Wed 23-Sep-20 13:48:05

Y’all are lucky I have energy today grin I’ve been thinking of doing it for two or three threads now.
I know there were other links I didn’t include so sorry if I missed one you posted. Sorry you feel rough @godhelpusall I was like that the past few days even coughing really chesty yesterday. Today? Fine. I guess it really was fake.

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AndsLee Wed 23-Sep-20 14:15:37

@Criticallythinking - Just delighted our plight is being recognised at Parliamentary level. About time... I wonder if they will finally start to consider plasma treatment for long haulers? Seems to me the most sensible solution... I know you are coming out of a relapse, as is @Emoojoo. Can I ask, did you feel rubbish for a straight 2 weeks, or rubbish for a few days, OK for a few days then rubbish again?

Dare I say it, but the breathing through dust thing seems to be actually easing! Like... It's only very slightly detectable...

I also experienced the "breathing through menthol" thing for the first time today. Panicked that this was a new symptom, then realised, all my cream is menthol just now, my CBD oil is menthol tasting, I had just brushed my teeth... Paranoid much!? haha ;)

AndsLee Wed 23-Sep-20 14:23:01

Also, for those with burny skin... I got a script for "Dermacool" cream. By god it's the bizz. It's a menthol cream, it really cools the skin.

Whatnext2018 Wed 23-Sep-20 14:39:50

And me too 👋🙋🏻‍♀️

TiddleTaddleTat Wed 23-Sep-20 17:01:16

Just done a simple sit/stand test on myself to check I'm not imagining things (as that Dr got into my head yesterday.

From sitting to standing, my heart rate went from 78 to 115 within 6 mins, then continued to gradually drop then rise up to 120 within 9 mins when I sat down. Had associated palpitations, lightheadedness and some weird icy calf sensations (blood flow?)
As far as I understand , POTS is diagnosed with an increase of 30 bpm within 10 mins of standing. Does that sound right, @MillStone ?

LetsBeSensible Wed 23-Sep-20 17:21:10

@TiddleTaddleTat I think POTS was 20bpm increase
@Whatnext2018 sorry I did attempt to tag you, maybe forgot as Ai was checking if you were called whatsnext (you’re not) apologies to anyone I have missed, it isn’t intentional blush I’m just a bit slap dash!

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Criticallythinking Wed 23-Sep-20 17:28:28

@AndsLee it was up and down, especially in terms of pain overnight. I had a good day yesterday, good morning and then shoulder pain this afternoon. I probably overdid it yesterday because I felt better. Classic really!

Oh and funny what you said about menthol and wondering about symptoms. I got two circular bruises on the bottom of my foot and panicked I had some horrible coagulation issue. Then remembered I had stood on my son’s playmobil people grin

Had an echocardiogram today and it was fine (phew). But the guy doing it was a Covid sceptic- how I held my tongue I will never know! He knew from my notes I had had Covid and he said oh didn’t everyone in March, in a sarcastic way. Whole thing left me feeling crap and I don’t think helped my pain. Telling myself people are scared so they down play the risks.

MillStone Wed 23-Sep-20 17:29:10

@TiddleTaddleTat sorry I’m not sure but I think it’s possibly a longer duration and blood pressure plays a factor too. During the test you have to wear this grabby little finger blood pressure monitor that squeezes your finger every second or 2.

My calfs also feel heavy / painful when I stand. Sometimes they feel like lead weights — same with my back. My GP informally speculated it might the brain over-amplifying signals.

I’ve been trying to strengthen my calfs. In the first 3 months of illness I lost so much muscle and oddly twice as much on one calf as the other. Anyway... I’ve been doing stair raises every day for a while. They’re quick and easy and on YouTube if you’re interested.

TiddleTaddleTat Wed 23-Sep-20 17:42:54

@MillStone thanks, I might check those out. Did you get a positive diagnosis after the test?
I had a look and it is 30bpm within 10 mins, https://www.potsuk.org/diagnosis
POTS uk day GPs can diagnose using this simple test but I guess tilt table is 'gold standard'.
My heart rate is much less spiky doing simple slow walking too, I would like to start trying more of this - plus calf strengthening.

MillStone Wed 23-Sep-20 18:07:49

@TiddleTaddleTat haha no they didn’t say anything but I did try. Ordinarily I wouldn’t have asked but I had such trouble getting my heart eco results that I did.

AndsLee Wed 23-Sep-20 18:10:12

@Criticallythinking That's exactly what I think re: folks being scared!

Talking of bruises, I do have this wierd reoccuring bruise on my knee. Tis very odd.

I had a good day today, trying to gauge if I should expect more over the next week? One day at a time. Working helps...

LetsBeSensible Wed 23-Sep-20 19:08:34

I like this picture, it’s USBased from this article
www.bloomberg.com/graphics/2020-opinion-covid-long-haulers-chronic-illness/?fbclid=IwAR20sxh2H2Um_t5lusTH6lbmRPFc02qGw4Uq5uFnE-BLseLn3lCCPBV2Aes

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mellowgreenspring Wed 23-Sep-20 22:51:51

Just joining back up as I'm having a total relapse, my son has bought home a sore throat and cold and I've gone straight back to March and felt the awful burning acid lungs again.

It's knocked me out, my head is fuzzy.

On top of this I went to a urologist last week as I have burning in my bladder but no UTI had a scope and it's all clear, started taking some tablets he prescribed and ended up 4 days later passing out cold in the toilets.

It's been a rollercoaster the last two weeks as always, just when I thought I may just be getting better.

So just checking in..

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