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Covid lungs thread 18 weeks plus - thread 2

999 replies

LetsBeSensible · 23/09/2020 10:16

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

OP posts:
Thread gallery
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TiddleTaddleTat · 25/10/2020 11:37

Came across this - mainly from a menopausal/perimenopausal angle. Have only watched first 15 mins though. Sounds as though oestrogen is being discussed as protective from covid symptoms, an explanation for the cyclical nature of symptoms that many women report.

m.youtube.com/watch?feature=youtu.be&v=6uYWkLOVar8&fbclid=IwAR3OLAEWgPP5WavNbwag0qPEDoaVxZUc1vbADkMy1HUz1zsf5p_AkkzFDqQ

LetsBeSensible · 25/10/2020 12:32

Thanks all. I did a lot just over a week ago, combined with period it seems to have caused a problem.
The jelly is the feeling in the muscles - that if i were to try to stand up I’d just collapse. It’s not quite the same as low blood sugar.
This kind of thing has happened before with ME except for the breathlessness

OP posts:
Whatnext2018 · 25/10/2020 13:32

@LetsBeSensible Sorry you’re relapsing so badly, it’s it period/ovulation time?

I’m approaching ovulation (I think) and chest is tightening more, also with the sore throat and the fluey/coming down with something feeling. I had really bad heartburn the last couple of days, only ever really had this in pregnancy.
What are everyone’s thoughts on reinfection, is it likely? I assumed it wasn’t but a friend spoke to a doctor and said there is a chance and I need to be careful, is this correct? I thought it was really rare, this has now set my anxiety off.

fedupofbed · 25/10/2020 14:59

@TiddleTaddleTat thank you so much for posting that link. The 2 experts were really well informed and enlightening. The things I took from it are that there is a big link between oestrogen levels and our immune systems, though there is of course no magic bullet cure, and everyone is individual so a holistic approach should be taken. I'll be pestering my GP again tomorrow to go back on HRT (I previously tried it briefly but then came off because running and addressing work stress seemed to do the trick. I do wonder would things been different if I stayed with it/ still been on the pill 🤷🏼‍♀️).

@LetsBeSensible I'm sorry you're having such a big relapse 💐. My SOB came back on Thursday, which I got really depressed about as it's been ages since I've had this. It also makes me really anxious, and triggers memories of when I was really ill. Then last night I came down with a heavy cold, so I'm feeling a bit sorry for myself.

@Whatnext2018 I'm sorry you're relapsing too. I'm still getting hair loss. I think there have been a couple of cases of reinfection but from what I've read it's incredibly rare.

Kitcat122 · 25/10/2020 17:31

@whatnext2018 I experienced the same hair loss for a few months. It settled down about a month ago in line with vastly improving sob.

MillStone · 26/10/2020 07:33

This is from the LH Facebook Group. It was posted by someone whose BIL is a retired GP. It's really nice. And grounding.

Recovery is a peculiar thing. And so here is today's little golden nugget of hard-won wisdom. Recovery is not a smooth, progressive taper, with the crappy symptoms getting less and less in all respects as time goes by.

What usually happens is that your exercise tolerance will gradually increase, but this is not necessarily going to be noticeable on a day-to-day basis, or even on a week-to-week basis. It's much more evident when you look back over a fortnight or a month at a time. Don't look for day-to-day changes, but keep a little note of (for instance) how far you can walk, or how much you can do, before having to stop to get your breath back, and you'll find that a month later this will have improved a bit.

The other thing that causes a lot of frustration and disappointment is that even though you may be able to do a little more than you could a few weeks ago, for a while you will continue to find that at the point at which you hit your 'wall' it will feel just as bad as it did at the start. This leads a lot of people into thinking that "it's not getting any better", or that something is wrong about the way in which your system is handling the situation. On the contrary, this is exactly how recovery progresses.

For a while, the 'brick wall' will feel just as bad each time when you hit it, but what happens over the weeks is that your limit will gradually move further outward - your capacity will increase - such that you will find you can do more before you hit the wall. Then what gradually happens, as more weeks and months go by, is that the 'brick wall' feelings will gradually become less unpleasant, little by little, and your recovery time afterwards will also get progressively quicker.

The frustrating thing is that your exercise tolerance will improve before the 'brick wall' thing does. This is normal. Keep this in mind and you won't fall into the trap of beating yourself up when things don't feel like a nice, steady, upward-sloping graph of improvement.

"I've never seen any of this kind of thing articulated or explained in any medical texts, or heard it described by medical teachers, maybe because it isn't a particularly sexy subject, and doctors tend to have a somewhat short horizon of interest in illnesses. Once a diagnosis has been made (or not), and any pronouncements offered, people are mostly just left to get on with it. But I've seen this kind of thing hundreds of times, and there is a remarkable consistency in the way people seem to go through this process. And I know of no way to speed it up. It is a natural process, and you just have to go through it. But have faith in the fact that your body is a fantastically subtle and powerful self-healing mechanism, and it will provide an answer, in time.

LetsBeSensible · 26/10/2020 08:21

@MillStone thanks for posting, I saw that and his advice to “be more cat” is spot on.
Another interesting point was the article in the Guardian by Dr Xand who said we are used to having viruses, we get them in childhood and get them out of the way. But this is a new virus, we have no resistance and we’re getting it as adults. If you get chickenpox as an adult it’s much worse.
So on those notes I’m going to have a little lie down

OP posts:
fedupofbed · 26/10/2020 09:22

Thank you for posting @MillStone 🙏🏻. This is just what I need to read. Like @LetsBeSensible I took great comfort from the cat wisdom post too (I actually saved it on my phone).

"The human system is fantastically complex, and you need to try to keep faith with the fact that your body will sort this out for itself, albeit much more slowly than you would like. We cling to a ridiculously arrogant notion that we can influence and manipulate human health however we want, but in reality a lot of our pills and potions are ludicrously crude...
"If you were a non-human animal, you would find a nice warm spot to curl up in and sleep a lot until you felt better, like cats do. And please believe I'm not trying to be at all patronizing, or to minimize your suffering - I have followed quite a few people over the long term as they have worked their way through these kind of things, and I know how debilitating they can be. But the overall outlook is good, and will progress better if you treat yourself like a cat. Really. Eat nice things; do nice things; rest and sleep a lot. I mean this sincerely."

fedupofbed · 26/10/2020 09:23

Thank you for posting @MillStone 🙏🏻. This is just what I need to read. Like @LetsBeSensible I took great comfort from the cat wisdom post too (I actually saved it on my phone).

"The human system is fantastically complex, and you need to try to keep faith with the fact that your body will sort this out for itself, albeit much more slowly than you would like. We cling to a ridiculously arrogant notion that we can influence and manipulate human health however we want, but in reality a lot of our pills and potions are ludicrously crude...
"If you were a non-human animal, you would find a nice warm spot to curl up in and sleep a lot until you felt better, like cats do. And please believe I'm not trying to be at all patronizing, or to minimize your suffering - I have followed quite a few people over the long term as they have worked their way through these kind of things, and I know how debilitating they can be. But the overall outlook is good, and will progress better if you treat yourself like a cat. Really. Eat nice things; do nice things; rest and sleep a lot. I mean this sincerely."

Kitcat122 · 26/10/2020 09:43

Thank you @Millstone that's spot on xx

AndsLee · 26/10/2020 11:50

Morning all

So this is what I have learned this week:

  • Vitamin D3 is a natural mast cell stabliser. Wonder if this is why it's so good for treating Covid-19?
  • Cetrazine worked for a week, then didn't. I've switched to Clarityn, which also contains a mast cell stabiliser. This takes 3-5 days to kick in (as opposed to the antihistamine, which is immediate). I'll report back because I am on day 3.
  • I've sort of been following a low histamine diet, early signs seem to be that "you are what you eat"...
  • I definitely have low stomach acid rather than high, which of course comes with the symptom of creating allergic reactions.

So what am I doing?

  • Come off the Omeprazole and taking apple cider vinegar instead.
  • Trying Clarityn - going to do this for a month if it sits well enough. I notice that someone before had posted that they started Fexofenadine in mid September and is now feeling better. Fexofenadine is also a mast cell stabiliser...
  • Taking multivitamins and iron, turmeric, probiotic (but might stop this) and Vitamin D3.

At the end of the week I am going to contact my Dr if I see an improvement and ask for Histomine levels to be checked, and a DAO test.

This is the plan...

AndsLee · 26/10/2020 11:55

I also wonder if this is the reason why people taking the likes of Ranitidene and Cimetadine for heartburn as opposed to Omeprazole (though Omeprazole is far better for high stomach acid) recovered from Covid-19 quicker? There was an article about this early on, a Consultant from New York noticed the connection. H2 Receptor Antagonists like Ranitidine etc. have antihistamine qualities...

Myusername2015 · 26/10/2020 12:05

Hi all new to post and just after some advice. I’ve never had a positive covid test although I had a week in March with a week of flu like symptoms they weren’t doing mass testing then.

I’m now on week 5 of pneumonia (x day showed) and was admitted to hospital and have been on nearly 4 weeks of antibiotics and steroids. After symptoms worsening again this weekend I had another xray this time which was clear; but ct scan showed ground glass pneumonia (again covid negative) they said they only normally see this in covid patients. (But have not had a positive test at any point)

I am literally permanently exhausted and getting out of bed is tiring enough; does anyone think this sounds like potential long covid ? I’ve been off work 5 weeks already ....has anyone paid privately for an antibody test? Nhs just don’t really seem interested; I don’t smoke and am
normally healthy and well. Thanks so much for anyone sharing any experience.

stayathomegardener · 26/10/2020 14:05

Just signing in with an update as a Marcher from the lungs 1 thread.

Generally I'm much improved, doing triple what I could in the early days. But probably only back to 60% of my pre March self.

Having the relapses still with chest pain, breathing and acid reflux.

I've historically had low stomach acid so treating it that way plus trying the Swedish device Iqoro but results will be at least 3-6 months, just trying to cover all bases.

Will try antihistamines tonight as poor sleep is driving me nuts.

Wishing all well. x

Meercatmama · 26/10/2020 16:06

Hi everyone
I am from the first lungs thread. Hope everyone is ok On half term now and managed to get through the seven weeks. Have been tired sleeping up to 10 hours at a time but generally ok. Sometimes a sore throat and the on/off cough comes back. Had one cold but through that now Feel I am 95% back to where I was . Glad to see everyone is improving slowly. It has been a long haul though

Ernieshere · 26/10/2020 16:51

Im off to the hospital tomorrow, to see Audiology about my constant Tinnitus since March.

I will let you know if they can help Confused

Egghead68 · 26/10/2020 17:18

Hi @Meercatmama! Glad you are doing well!

MillStone · 26/10/2020 18:42

Good luck @Ernieshere

I’m trying steroid ear drops at the moment and something similar for my nose. They don’t seem to be doing anything.

Whatapickle78 · 26/10/2020 20:17

@Millstone thanks for your post this morning. That’s so well articulated and like others have said, just what I needed today!

@AndsLee interesting about the Vit D and also the antihistamines switch.... keep us posted on what happens.

The stiffness abs swelling in my hands, and nerve pain in my arms and wrists had got much worse this week. Too much to put down to just PMT exacerbating it sadly. I’m wondering if this is where my symptoms will stay for a while? It’s my main problem at the moment, aside from fatigue and some brain fog.

Arm pain was so bad last night I had a horribly vivid dream that I developed sepsis in my forearms Shock

Whatnext2018 · 26/10/2020 20:39

@MillStone Thanks for posting that, it’s reassuring and comforting to remind ourselves of the healing process.

Getting a bit concerned about the pain in my chest, it’s stinging quite a lot, anybody else had this? Chest x ray clear in July, but I’m getting quite paranoid it might need further investigation?

Added iron to my supplements, is anyone else taking? I read if iron levels aren’t low, perhaps shouldn’t take them. No idea if mine are, so I’m unsure whether to take 🤷🏻‍♀️

A friend recommended castor oil for the hair thinning/loss, might give it a whirl.

Whatapickle78 · 26/10/2020 21:21

@Whatnext2018 can you request a heart scan from your dr? You’ve had this for some time now right?

I found taking high strength fish oil after a few weeks coincided with my hair starting to thicken again. Might be coincidence, but I’m not stopping it.

Whatnext2018 · 26/10/2020 21:24

It comes and goes @Whatapickle78 I’m ovulating (most likely) at the moment so wondering if that’s why it’s worse. It’s in my lungs, just always feels like there’s something ‘There’ could it be my heart? I’ve had an eco thingy before (sorry forget the name) that was fine, but again, it was back in March. You think it’s heart related, not the lungs?

Whatapickle78 · 26/10/2020 22:01

I think ‘chest pain’ could be either, but then I’m not a doctor... it’s maybe worth asking for a scan of both now that we know from all the studies that Covid can cause issues for heart, lungs etc. It would probably put your mind at rest too?

I’ve been told by doctors before (I had bad pneumonia in my early 30’s that came back twice) that ongoing chest or rib area pain after lung infections is often due to muscle tightness/weakness there from poor breathing. It can feel sharp which can alarm people. I think once my own infection had (finally) gone back then, the residual pain I had was caused by just that - weak, tight muscles from not breathing properly fit so long. It eventually got better.

But always good to check just to be sure I think, especially as you’ve had for so long on and off. I am still dithering about asking for a heart scan myself, as I know the swelling and pain I’m getting could be heart related too.

Whatnext2018 · 26/10/2020 22:20

Thanks @Whatapickle78 yes, I think I better get it checked out, will cost me a fair bit though I’m sure, as waiting on the public system here will take ages 😬
Where are you getting the swelling and pain?
I feel like saving up and getting a whole body scan ffs 🙈

Whatapickle78 · 26/10/2020 23:44

@Whatnext2018 hands and arms and occasionally feet too, plus lower back pain. The rheumatologist I saw thought it fitted pattern of reactive arthritis, but I’ve read heart problems can also cause this.

I’d love a full body scan!!