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.

Hi sadly still here xx

Checking in at five months!

Five months here too...

Me too, since March. It's not every day now, much better but it flares back up from time to time.

Thanks for the new thread 🙌

Thanks for the new thread - it's such a support right now.

to everyone still suffering, and especially those struggling psychologically with it all too.

I've got an MRI of my neck tomorrow to check out nerve pains in hands and arms (think GP wants to rule out anything more nasty tbh) so waiting for that.

My GP has been really good on following up my queries. The MRI came as she rang Neurology for their advice on what to do with me. So yes @whatnext2018 I would definitely persevere with your GP and keep up communication so they can track how you are. I think it also helps me psychologically to know that there is some kind of 'path' in place with someone other than myself in charge!

@fedupofbed
I have just had the plumber round to fix our shower so that the cold setting works! I will keep you posted

@Whatapickle78 I’m not sure egst else to report to be honest, that hasn’t been covered! 🙈All blood tests came back normal, chest x ray, two ecgs, ct head scan all normal..neck scan showed slight arthritis in neck 🤷‍♀️ Off my own back and for my own peace of mind, I’ve been to a clinic to have two D-dimer tests..I don’t know what else they can do tbh and find it hard to see the doctor trying to conceal his frustration
as he can’t do anything about it..is bonkers

Hi everyone. Just over 5 months here too. Thanks for the new thread. Sorry about your relapse @TiddleTaddleTat - hope it's short lived.

I'm not having the best day either but I can't work out if it's actually worsening of symptoms or just that I'm in a grumpy mood! My baseline is still quite low.

I now have a Fitbit but can't work out if it's my best friend or enemy. I've become a slave to it and constantly checking my heart rate - I'm trying to keep it as much as possible below 90, though there are inevitable spikes. I've been managing just under 1000 steps a day the last few days - at a snail's pace!

Hi all I am also still going
@Whatapickle78 I also have nerve pains in my arms- I haven’t come across anyone else with this so nice to meet you. I’ve ended up under a rheumatologist who hasn’t found anything, so interested to see how you go with the MRI, good luck.

Just this week I seem to have come down with a gastric bug- well at least I hope it is that and not a new symptom at nearly 5 months in???

Last thing to mention is that I have twice tested low for adjusted calcium during this period, the second time was during a relapse of pain and it was very low. I’m taking supplements to see if it helps. Anyone else have low calcium?

Thank you for the new link, and all the friendly support and encouragement.

Got a bit out of breath today walking up a hill and now having to lie down in bed annoyingly. I am feeling much better than was but still occasionally exhausted, headache and and earachy and the bloody tinnitus still hasn’t gone...

5 months too - placemarking!

@Criticallythinking I have an existing nerve compression problem in my neck, so I do have milder symptoms like this anyway. But it's just got a WHOLE lot worse over the last few months. Almost unbearable at night.

Other longhaulers I've seen on Facebook have mentioned the nerve pains in arms and hands, and there are some who have spoken to nuerological consultants who've been told that this may be because Covid damages the protective sheath around nerves... and the nerves themselves.

Hence I've become quite interested in nerve repair, and this cold water therapy plus deep breathing does seem to play a role in stimulating the vagus nerve, and hopefully, assisting the repairing. All worth a try anyway.

I hope yours improves with time. Have you had any nerve conduction studies done?

@Fishflakes these are the same symptoms I get when I do too much - but my baseline doesn't allow walking much yet. I also get the chest pains which I find really scary as they are in the heart area.

Hello all.

I first got sick in March. Now I have good days and bad days. Have been referred to the new COVID recovery unit at local hospital for tests. My remaining symptoms are burning in lungs/mouth/nose/ throat often, shortness of breath (sometimes) and pins and needles in hands (almost always).

Please could somebody link the first thread? I’ve tried searching and googling it but I can’t find it! Would like to compare notes with what my DM had in March. We suspect it may be Covid but the drs/hospital keep coming up with random ideas. They never tested her even though she ended up in A&E unable to breath just before lockdown. They insisted it was COPD and gave her steroids and inhalers. She got worse and had to have the paramedic out one night as she was struggling to breath. They scanned her lungs and told her it was fibrosis. She was still breathless and lethargic for weeks (lived downstairs as she couldn’t get up the stairs to bed) and asked for another scan which they then decided it was inflammation on her lungs, not fibrosis. She is finally recovering after many weeks and even managed a 4 mile walk at the weekend! So we think it must have been Covid but the drs will not admit to it?! I’d love to read up on your experiences of Covid just to compare!

@Ooooosh I'm glad your DM is recovering at last. This isn't the first thread but it's the earliest one I could find. Someone else may have more joy...

My lungs....part 4 www.mumsnet.com/Talk/coronavirus/3865832-my-lungs-part-4

The first thread was called something like "Are anyone else's lungs on fire" and dates from c 7th March (I think).

Thank you @fedupofbed and @Porcupineinwaiting for the prompt response. I’ll do a bit of reading and see if DM’s symptoms compare.

Happy reading. You might also want to google COVID and "ground glass opaicies"

Hi to folk,
Identifying with nerve pain problems.
My main problem since first relapse end of May, has been beside fatigue and sore eyes,
very hot legs and arms and then pins and needles. Very painful.
Towards the end of July everything seemed to be settling well.
Then after relapse last week pins and needles in arms and legs came back mild.
More intense heat pain but not too bad,now in head/face nose. And have had pins and needles start around eyes.
My honest opinion is it is working it's way around thebody.
Friend who suffers from Fibromyalgia said she has similar symptoms in past.
At it's worst Fibromyalgia sufferers can feel like their 'fizzing 'It also impacts on sleep.
Like CFS it can follow virus.

Hello and thank you for the new thread

@Whatapickle78 If covid damages the nerves, do you know if this can be repaired, does it heal? I occasionally have hand and arm aches and heat..not sure how to describe it and if it’s nerve pain.

@Ooooosh the earlier threads are called things like covid lungs thread 5 up to 8 then 8plusplus then lungs thread week 7, week 10

@BeautifulPark I feel like my eyes are just like this now, slightly sore everyday and more so at night if tired. Do you use drops or anything? Do you know the reason it happens 🤷‍♀️