Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

@Kitcat122 Thank you for asking. It was lovely and relaxing and our DDs had a great time; they went pony trekking twice and enjoyed the Bolton Abbey stepping stones. And I'm actually so much better, my temperature hasn't gone up higher than 37.4 for a whole week (still high for me admittedly), so I'm finally starting to be optimistic.

However, there are some worrying issues. I forget words and names, and I'm actually confused and disorientated at times. I'm also constantly sneezing (that started 2 months after I got ill) and I'm wondering whether I'm developing allergies that I didn't have before.

@TaxTheRatFarms I'm sorry to hear about your DS, I can definitely relate to 'not feeling normal since...' it can be hard to explain when people ask me what my symptoms are as they are so wide ranging and overall it's just like... my body isn't mine any more and I don't know what it's doing and why. I hope he starts to feel more himself.

I overdid it yesterday and paid for it yesterday evening and we will see what sort of relapse materialises. Sadly I have been trying so hard to put limits on my activity and my weak spot seems to be guilt about not helping others with stuff. That is what has led to this relapse!
I did about 1000 steps more than my usual daily maximum, according to the pedometer.
Then slept badly and was woken early.
Legs are like concrete, I feel sick, dizzy, and confused.

@KingaRoo, it must be awful to have health anxiety during this pandemic. Have you tried Gaviscon? A lot of us have had silent reflux which means stomach acid travels up into the oesophagus and causes all sorts of weird symptoms.

Afternoon all...

Nothing much to report today. @givemeanother still taking the Omeprazole. @alittleprivacy I think there is a thrushy feeling, you know. I can't tell if it's my tongue or my gums that's bleeding. I just am so unsure, my tongue seems a bit white, and my nose was definitely full of more white gunk yesterday, but I am aware that this can also be caused by Reflux. I think I'll maybe hold out till the end of the week and see, I'm back into the hospital for bloods.

The consultant did say she didn't think I had thrush last week when she looked in my gob, but... Could it be that the nystatin worked and it's come back a bit since increasing the Omeprazole? So hard to know without being examined...

I know I'm being referred to ENT, so it will be resolved eventually...I hope...

Goodness sake. Remember the days you made an appointment with your GP, nipped in en route home from work, and a week later your issue was resolved? Those were the days eh?

My sob and chest pqin stopped after about 3m hopefully. Could be after taking vit C.
But i have been losing a lot of hair. And get muscle twitches several times a day. And still have insomnia.
The kids seem ok once they stopped coughing after 8w. Hard to know when none of us have cayght anything since.
Dc2 has had random V since last oct about 5 times including once in lockdown when we hadnt been out. So not sure what that is maybe abdominal migraine as noone catches it.

@Lightsabre thank you. I do actually have LPR (silent reflux) diagnosed by barium x-ray but came off the meds about 2 months ago to see if I could manage without. Normally it just gives me a sore throat but maybe it is causing the weird chest. It could also be anxiety.

Waking up this morning it had completely gone, I can feel it coming back a little bit now. Surely if it was something serious it would be there all the time rather than come and go?

Piece about long tail Covid on itv news today. Also an actress on social media talking about long tail and hair loss. Interesting as for the last month or so I have noticed more hair loss than usual when I wash my hair. Thought it was ust because it spends its life in a ponytail these days.

@trevthecat absolutely they do! I've had the burning lungs now on and off for nearly five months too. Although I had no fever. Sorry you're experiencing this too, have you had any input from your GP?

@norugrats I haven't seen the gp. I've had telephone appointments due to what I thought was hay fever. I get sinus infections so am on antihistamines full time, I just thought this year was unbearable but maybe it's not hay fever at all. Thanks you for replying

I’ve had non stop sneezing and runny nose all day, feels like a heavy cold/flu..in the middle of August in 28 degree heat...wtf?!

@trevthecat I have had burning lungs and sob as my main symptoms for months.

For all those who still have burning lungs, do they hurt all the time or just when you breathe in? I have more of a feeling that I'm breathing in menthol, but not sure if that's going on with others or unique to me!

@TiddleTaddleTat I hope you got some rest and your day wasn't too bad in the end? I'm now edging towards 1500 steps a day on a regular basis which is a bit of a milestone for me - I remember you were on that level for some time. I'm crossing everything for a good night's sleep tonight and onwards and upwards tomorrow.

My lungs burn for a few hours a day for about 1/3 of the month. Usually starts in the evening, but on a bad day lasts most of the day and comes with tiredness. When they burn they just keep at it, not affected by my breathing. I cough more at these times too.

I had the menthol thing in my nose when I actually had COVID but not since.

Oh and my other little milestone is that I've been able to read a book again! Before all this I was a big reader but I've been too lacking in focus and agitated throughout all this. I'm now really enjoying a trashy novel - simple pleasures!

@trevthecat lung issues similar here, burning and feeling tight chested. Frustratingly I’d had about four weeks of feeling really quite well, then seem to have relapsed. I’ve been doing next to nothing the last ten days though I’m still feeling out of breath and aware of weird heart stuff on and off (palpitations?)
I haven’t actually been speaking to my doctor about any of this as I’m assuming it’s all still related to virus and not much they can do. They are checking my stomach out as have had reflux and awful stomach pains (not sure if same as you @AndsLee ) but they haven’t linked that to covid at all.
Hope the heat isn’t aggravating everything for everyone.

@fedupofbed thank you . It's been a fairly quiet day and I'll probably get to about 1500 steps by the end of it so hoping tomorrow my legs aren't aching so much.

That is brilliant about being able to read a book - I am the same. This has only started to come back for me in the past week or so and although I can't read more than a chapter or so at a time, it feels great that I can maintain some sort of concentration.

Has anyone mentioned word finding difficulties/getting mixed up. For example I wanted to talk about closing the windows and I said to DH to close the umbrellas... this is happening numerous times each day. Really unusual for me, I'm usually pretty sharp (even if I do say so myself). I really hope the real 'me' comes back at some point...

@TiddleTaddleTat Sorry it’s come back for you today, hoping it passes quickly,

I get mixed up with words or it takes me longer to find the word in my mind that I’m thinking of. It’s not as bad as it was. I remember a couple of months ago reading the fishy book to my dd (Julia Donaldson I think-if that’s her name 😬memory definitely taken a hit)
She pointed at a starfish, I couldn’t remember for the life of me what they were called, then I sort of remembered but couldn’t put the word together? I remember thinking it’s a star, a fishy star..it was awful and I cried to dh that night. It has improved but comes back occasionally as does the short term memory loss. I’m usually really sharp and my memory’s really good. During my period last week, I struggled to remember what I’d done the day before..I find it quite distressing at the time.

Does anyone else find the mornings a real struggle too? It takes me ages to properly wake up and even after I’ve made dds breakfast and a cup of tea etc, I’m still not quite with it for a while. I’d so love to feel awake and clear headed in the mornings as I used to. It’s tines like this I feel old and if the old me has just gone,

I just realised it’s the end of a week anniversary, maybe week 24?
I will be glad to see the back of Aunt Flo, she’s packed up thank god the old cow, and with the warm weather I’ve not slept well.
Takes me ages to get going in the morning, someone explained that waking up actually takes a massive amount of energy like 10% of a day’s worth just to get the brain going and the limbs upright...might be BS but helps me feel better when I’m still sitting drinking tea 2 hours later considering getting a shower...

@Whatnext2018 Oh yes to the mornings. I'm very very slow, particularly during a relapse. When I had a run of good days I was starting to feel more awake in the mornings, waking naturally at 7.30 and my mind getting going. Really hoping that comes back. This morning I just wanted to vomit as soon as I woke up and took about 3 hours to get up properly.

@trevthecat mine is due to pleurisy (diagnosed on two separate occasions at hospital). Docs said there was no treatment that it would go in its own time. To take painkillers but I don't find they help!

@fedupofbed my lungs burn on and off all day - not necessarily when i breathe in. They're burning now as I'm typing although it has eased in intensity over the past nearly five months! Great news that you're able to concentrate on reading a book now, a definite step in the right direction.

Yes I forget words and names for things. It's a little better this last month. My short term memory has also been terrible which is unusual for me but everything since Covid is unusual 🙄

Yes I get a bit muddled with words too and easily overwhelmed. I've downloaded a brain game app called Left v Right recommended on another forum - I'm atrocious 😁. I'm also doing online scrabble and learning Italian on Duolingo just to try and keep my brain ticking over. Can't imagine going back to real just work yet, physically or mentally. I probably need to start thinking about it though.

Looks like I'm going to need another very slow today today...
I suppose I can't be surprised about causing the relapse really as I was probably doubly as active that day than usual.
Just got impatient with trying to get my old life back I suppose.
The thing is that when I am having a good day it is so very easy for forget how fragile I still am.
I need to think about return to work too. I can't afford any more time off, but there is no way I am well enough to do the job properly. If walking to the park and driving 10 minutes in one day causes me a relapse like this, how on earth I can cope with that plus the high stress of my job is a big worry.

Anyone’s breathing got worse during the thunderstorm last night (if you had one)?
I’m not sure but it felt like the combination of the hot air and the storm affected me - or maybe a coincidence! There is something like a thunderstorm asthma and hayfever can get worse (not that I have it).