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.

@seriouslynonames
Sorry to hear you are worried. I suffer with health anxiety in general so completely understand.
The good thing I would think is that nobody seems to be in a rush to do any further tests on you. I would have thought if they even for a moment thought it was something as serious as cancer they wouldn’t be waiting around seeing if it will clear up with amoxicillin. I am not an expert but I would also presume that the radiographer knows what cancer looks like so again if you aren’t getting called back immediately then I think you can relax. Easier said than done I know. Keep us updated. I have actually been getting worse more often now than straight after my recovery. Have no idea what’s going on. Especially don’t like the breathlessness and heart palpitations and pounding that comes on around every 2 weeks at the moment.

Thanks @findingschools4myboys. You are probably right, but a friend worried me when I talked to her, about whether it might be something else and I can't put it out of my mind!
Sorry that you are finding you are getting worse more often - I am the same. I recovered after the first illness, then was ill again and recovered, then a third time, but after the fourth time I haven't recovered in the same way, the fatigue hasn't gone this time, but I at least got on top of the temperature, until yesterday/today. Ah well, will see what tomorrow brings! X

Hi all,
Anyone with the constant return of sneezing and runny nose/hay fever/cold symptoms?

Hi @seriouslynonames I'm sorry you're having a tough time right now. Another one here with health anxiety so I also understand. I think we'd have to be superhuman not to be anxious with a bug that seems to affect so many of our vital functions that we previously took for granted and didn't think about (breathing, heart beat, temperature, etc). I would agree with @findingschools4myboys though - I would imagine that they would investigate immediately if they thought it was anything sinister?

I'm sorry that both of you are still getting big relapses after all this time and hope they are short lived. Keep us posted.

@Whatsnext2018 - my nose has been a wee bit runny, especially after I eat something warm. I'm kinda welcoming it though, the more that runs out of my body just now the better...

For those that have burning skin, how is this going? I don't want to jinx it by saying this seems to be easing, but... It seems to be easing. It's still there, but it seems to becoming more "patchy", mostly on my hands. I continue to take painkillers when I feel it coming on, and that seems to help. My gut instinct on this is that this is nerves healing...

@fedupofbed How are you getting on the the meds for auto immune issues? Be interested to hear...

I think (and again I don't want to jinx it) that my heart is not dropping to a really low rate as much as it was. I think my heart rate has always been quite low, but in the mornings it was dropping to 40 beats per minute. Now, when I wake, it seems to be around 60 beats. Much more normal. I just wish they would let me know about my 24 hour ECG. I believe it will be another 2 weeks before they have reported on this. I presume this means there is nothing to worry about, and hope it does NOT mean that they haven't looked at it at all!

Still waiting for blood results...

My symptoms now:

• still have the breathing though dust/throat sensation, but I think the Omeprazole is finally taking the edge of this. It's not as bad, and I hope this will eventually just fizzle out.
• still have the burning skin, but it does seem to be easing.

Em... I think that's it! Be curious to see what happens when Auntie Flo rocks up this month.

Stay strong, y'all! We will get there. Honest!

@seriouslynonames I agree with all the other posters - if there was potentially a serious problem they would put you on the 2 week cancer pathway rather than try antibiotics. I also have health anxiety so I totally hear you, and one option could be to call the GP and ask for an explanation. I did that recently after seeing the rheumatologist.

I am having a torrid time with my bowels. Nearly four weeks of upset stomach. Last night was the first night I didn’t get up to go-yay! But then I went three times urgently mid morning. My SOB is back at ridiculous levels and my BP is low so my stomach virus must have triggered a relapse. It’s truly never ending.

Hope others are having good days to balance some of us out x

Folks...

I had mentioned before about my thoughts that the "burning skin" is nerves healing. I've just read, that normal painkillers, i.e. paracetamol or ibuprofin, don't work so well with nerve pain. This makes sense, because I need to "catch the pain" and head it off before it develops, otherwise the painkillers don't work. This makes me think that my gut is correct, this is nervous system related. What do you think?

@AndsLee Yes I suspect you're right . Nerve healing apparently can take quite some time. Have you tried CBD oil? Lots of advocates for it on the Facebook group.

Hi @AndsLee my main symptom has been nerve pain and I’ve been on gabapentin for that since April which has helped a lot.
I’ve found that the pain hasn’t been as bad lately and I get an itchy feeling now instead which I take as a good sign. The weird thing is that I get waves of the pain rather than it being there all the time. Apparently Covid can damage small blood vessels as well as nerves and I assume my blood vessels and the associated nerves are damaged.

@Criticallythinking

Thanks, that's useful info. I definitely feel the pain is becoming reduced... I long for the itching to start haha! I also get waves. Once again I think we're on the same path... xxx

@AndsLee I feel very naughty as I haven't started the hydroxychloroquine yet. This is partly because my acupuncturist seemed really anti it while I'm still on the CHM, and partly because around about the same time my fatigue levels and heart rate fluctuations started to improve a bit anyway so I kind of wanted to run with it. I'm still planning on taking it but have put it on hold till I finish my CHM course. I'm glad you're still improving 💪.

I've not had a great couple of days. Definitely overdid it last week and have had a return to extreme fatigue accompanied by a very low and unresponsive heart rate (completely the opposite of how it used to be jumping all over the place when I stood up). Also low mood and very unproductive sleep. No SOB at the moment though 🤞🏻🤞🏻. So I'm now back to lots of rest, and trying to do positive rest things like meditation, feel-good TV etc.

@Criticallythinking I'm so sorry you're still in the thick of it 💐

Hi all. Having a rubbish day, not sure if it's a relapse or the fact I've got w tooth infection brewing.

I've put together a quick survey on long Covid in kids if anyone has any

www.surveymonkey.com/r/QFDMFT9

Just checking in. 5 months now - still upper back pain, chest tightness and fatigue but I'm going back to work in a week or so on a phased return and hopefully light duties. My lung ct scan from a month ago has not shown any serious problem but a full clinical letter is being sent apparently and o have a follow up respiratory appt in October. @Whatnext2018, I am also very bunged up first thing in the morning and late at night. I'd never had hay fever before this. I'm not on any treatment now apart from paracetamol when the pain is really bad. Still can't walk far or for very long but can mostly get by on day to day life.

Hey @Lightsabre good to hear from you and that your scan was okay. It's a big thing going back to work after so long, I hope it goes well. How's your SOB lately?

Another one here with a blocked nose. It's especially bad at night and has been this way since March. The only thing that touched it was an Avamys spray but that gave me a headache.

@MillStone, hi - how are you getting on? My Sob was getting better but when the hay fever was bad during the very hot days, it started to worsen again. Not to bad levels as in the beginning but enough for me to stop doing things. Wish I knew what has happened to my body.

Hi everyone,
Glad some of you are improving.
Sorry some of you not so good.
I'm still battling skin burning nerve pain.
Unfortunately, it's affected my eyes and I have a box full of drops and
ointment. I just hope there is an end in sight.
5 months since original virus.
And sadly, lost my darling cat died yesterday.
A good age but so sad.

Take care everyone.

@Lightsabre good to hear your breathing's improving. Mine's okay if I rest but I'm pretty active during the day and working part time from home so when I get tired the awful back pain and SOB returns.

Yes, hoping we'll find out what's happening to us. Can't quite believe it's been 5 months.

@BeautifulPark Sorry you lost your cat

Yes @Lightsabre good to hear from you - I hope work goes well for you next week. I've just spoken with my very supportive manager and I'm being furloughed for another month. Hopefully by then I'll be strong enough to try a gentle phased return.

For those with congestion, Beconase seems to help me.

@BeautifulPark sorry about your cat 💐.

Thank you for your kid thoughts

xx

I have been dipping in an out of these threads. Similar to most I had suspected Covid in March and just not quite got over it.

Went to see my gp as the rib tightness and shortness of breath is just not getting better. Had bloods taken then as a result had an out of hours gp turn up at midnight to give me a heparin injection.

Apparently I have post covid sticky blood so need to take blood thinners while waiting for CT scan.

Thing is this has made me so jumpy that every ache makes me question if it could be more.

The tablets are making me really tired on top of everything else and I just want to cry now.

@beautifulpark sorry about your cat. I’m cat mad (no room to have one) have you seen the cat of the day website? You could send a pic in as a memorial.
@andslee had been counting down the days until my next haircut but perhaps will do a column for how flipping long it will be til you get your results.
@BananasAndApples sorry you’ve had it rough, no advice but hope you’re ok.
I am having a terrible evening, it involves sitting in the bathroom very very frequently. It’s so bad I think it may be something I ate.

@LetsBeSensible Sorry your tummy is so bad.
Hope you get a good night's sleep.
X

@BananasAndApples sorry to hear you're worried about aches etc. If it's any reassurance, many of us on this forum are having the same aches as you and presumably it's not due to sticky blood for the rest of us as I assume we've had the same tests as you and ours have been okay. So the pain is likely due to inflammation rather than something more sinister - I hope anyway!

Do you know which blood test you had which was high?

@givemeanother it was the test for blood clotting, the results were given over the phone and I dont think she said which test it was in detail.

Biggest worry is my left arm has gone tingly and feels cold - not to touch but inside if that makes any sense.