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.

I'm reading this thread for a friend who is on week 14 now but has had negative covid tests and negative anti body tests but doctor thinks it's as a result of covid. She has all symptoms you all mention.
Have any of you had b12 checking. Low b12 damages the nerves and isn't routinely tested for. It also has a lot of the symptoms mentioned.

Here are pictures of the names of older threads, and who started them.
Our history! I might read. I wonder what we knew back around day 49.

Wow, how interesting..so I wonder if many of those original posters are (hopefully) now well?

@whatnext2018@Bonkerz
No, I've not tried drops.
I think just one of the endless symptoms.
But I think with me it's main issue.
However it affects us we can feel quite low at times.
Have a good night.

@Whatapickle78 If covid damages the nerves, do you know if this can be repaired, does it heal?

@Whatnext2018 I’m sorry I don’t know the answer to this, and I’m sure as the evidence is evolving, the experts aren’t sure either. Generally, nerves can/do repair, yes, though v slowly and it depends on the type of nerve (motor or sensory) and how it was damaged. For example, cut nerves seem to repair faster than crushed nerves...

No idea what this means for nerves attacked by a virus though. If anyone actually manages to speak to a neurologist perhaps they could ask.

There was a guy on the Facebook Covid longhaulers group who spoke to a neurologist at KCL hospital for neurology and wrote up his notes for everyone. I’m pretty sure he was told that yes Covid attacks they nervous system and that was what was causing his ongoing symptoms, but the consultants view was that this was most probably temporary and the nerves would heal. You’d have to find the post though to check this I’m afraid...maybe there’s a way to search.

@Bonkerz hi, yes I had my B12 levels checked as part of some wider blood tests at around 7 weeks in. Everything came back fine.

Morning everyone.
Feeling so breathless today. I was seeing stars and dizzy in the shower. Now lying in child's pose feeling like I've run a 5k. My pulse rate is low but blood Sat's fine. I have pernicious anemia and haven't had my b12 injections since January, so hoping that some of the symptoms may be down to this and just waiting for blood test results. X I hope you all have gentle days

@oscarandelliesdad I have pernicious anemia and haven't had my b12 injections since January,

Are the blood tests to check how strong a B12 dose you need? If not can you get these injections arranged asap with your doctor? My mum has PA too and lack of B12 can be extremely dangerous, especially at the moment. It's one of the factors listed as causing severe Covid. It prevents white blood cell production, so your immune system can't function properly. It also causes gastritis, which can cause severe shortness of breath. Even outside of Covid, it increases your risk of developing osteoporosis. (My mum was diagnosed with osteoporosis after a dexa scan June, in spite of over a year of treatment to prevent it developing). So make sure to get it as soon as you can. x

A little privacy. Thank you so much for telling me that. My gp surgery told me not to worry about it!! Have been told to take sublingual spray or pills but the whole point of pernicious anemia is that you don't absorb like that. I have felt pretty abandoned by the NHS over all this. Am going to call my surgery now. Thanks again x

@Whatapickle78 Thanks for info on nervous system.
@oscarandelliesdad Sorry you feel so poorly. Hope GP gets you sorted soon.

My gp surgery told me not to worry about it!! Have been told to take sublingual spray or pills but the whole point of pernicious anemia is that you don't absorb like that.

That's honestly some really shitty advice! My mum was advised to avoid any B12 supplements as she can't absorb them so they build up in her system and cause her problems that have the potential to become permanent. Who do you organise the injections through? In Ireland, they are done through the GP system so I had gotten her to arrange at the end of February before things shut down. Then she got her next one in June.

Has anyone else suffered from Costochondritis? I had Covid in March and that plus a low level fever, exhaustion and myalgia persist. I'm so sick of it now, and dearly hoping its not permanent.

Costo seems almost universal with the long-termers. Mine had hit a fairly mild state until this weekend when I drove a 10 hour round trip. It was particularly bad the day after each leg. Bad enough to make breathing feel laboured again for the first time in over a month. I can breathe mostly okay again today, two days after the last big drive but the pain is still more present than it has been. I'm very tempted to take an ibuprofen today rather than just relying on anti-inflammatory gel and ginger. But I don't want to set off the GERD/thrush that is only just about under control.

My DD (16) has Costochondritis- she is using ibuprofen gel on it at the moment. The GP has basically said nothing to worry about, take painkillers 🤷🏻‍♀️

I don’t think that is what I have - which is some of the original centre -left chest pain radiating to my back and what feels more like muscular pain around my chest as well.

Doctor just seems to think this will go away in time. Still easily fatigued.

There’s a programme on tonight on BBC 1 at 9 about a doctor who had it back in March and had/has irregular heart rhythms etc. I was going to watch but not sure if it will make me feel worse/more worried 🤷‍♀️In the brief for the programme it was saying how the doctor was saying about recovery time, I feel although it will be interesting, it might not provide much positivity:hope? I may be wrong though!

also, I think I’ve asked before, but periods..mine is so far not a real bleed again, anyone else have this and know why not? I’m getting quite worried that I’m not bleeding properly each month.

@Whatnext2018 thanks for the heads up about the show tonight. I don't think I can bear to watch either... I've avoided much of the TV (and online) coverage mainly as I'm scared of what I might learn...

Still feeling a bit under par but I would not now class this as a 'relapse', I'm also very significantly less fatigued. Hoping I don't see a return of that. I'm still consciously forcing myself to sit or lie down between activities, when I can usually quite happily carry on e.g. gardening, mopping floors etc.

Hello all! How are you doing? I wanted to pop over and say hi. I've been feeling (finally) on the road to recovery since the summer holidays started. For the first week, I mainly napped. I couldn't stay awake. But then I cautiously started C25K (bearing in mind just a few weeks ago I couldn't do C25K with a slow walk and faster walk week 1 (let alone jog) and it set me back days with burning lungs and a tightening/lump in my trachea. Well I've managed weeks 1 and 2 with a normal walk and (veeerrrrry slow) jog and I've survived! Couple of times I've had a slight burn.

The migraines have seemed to stop and my period (which was always long and irregular but regular as clockwork 27 days during the 4+ months of covid) Is again late and lagging. Normality resumes?

Today I did Wk2, run 3 of C25K and then a walk with the family. When I got home, I was on 26500 steps, I couldn't leave it like that, so I went to the shop for chocolate (😂) and made it up to 30,000. Last weds I was totally proud that I'd made it to 20k steps.

I wanted to say that I've been through it with you. I genuinely thought his virus was killing me from the inside out and that I'd never feel well again. I still get puffed out walking up hill/walking and talking when it's more than a stroll, but that may well be lack of fitness, too.

For now, I'm enjoying the respite and want to assure you that there is hope.

Keep going! 💪💪💪

Thanks @Whatnext2018 . It's not just me then... I'm not really up for watching it either 🙄. My last two periods have been very light too but wasn't sure if that was related to being ill or my age (perimenopause).

@TiddleTaddleTat that all sounds good, onwards and upwards 💪.

I've had a phone appointment with a rheumatologist. He says he thinks my symptoms are long haul covid (I find it laughable that doctors are now explaining to me that this is a thing) but can't rule out an autoimmune condition given my ANA blood test and history. I've been prescribed hydroxychloroquine as a precaution. The best thing to come out of it though is that he's referring me to a respiratory consultant. Well I say best but I'm quite worried as my SOB isn't improving, which I've kind of had my head in the sand about.

In other news today, I paced the garden 3 times, did some cat and cow stretches and the breathing exercises @MillStone suggested (thank you!). Oh my exciting life.

@isitorisntit thank you for posting, that's fantastic!! I remember you started the last thread, so great that you have come this far.

Yes, symptoms started 13th March so have been here for the long haul.

I have noticed my chest (muscles/bones) still feel like I've lifted heavy weights--like that costochondriwhatchamacallit but the the weight in my chest has gone and the pulling in my back/between my shoulder blades also. I also noticed the muscles from my neck to my shoulders look big and round (like a body builder). I wonder if that's related (posture/strain)?

I've very little smell returned, which makes me very sad, and taste too. I really hope that comes back, but after almost 5 months??

@fedupofbed I feel so bad for you that you are still struggling so much. Try and look back and see how far you've come. I couldn't make it up our stairs for a while, now when I pass the halfway point I remind myself how far I've come. It might be small things but they all add up. I hope you get some answers soon. I had a clear chest xray which was reassuring so there's no way I'm going down the heart worry route. I'm very picky about what I read as no sooner have they said one (scary) thing, they've changed their minds.

Ah thank you @isitorisntit 💐. Yes it's a long old haul and all of us on these threads have been through so much and had such a bewildering variety of symptoms.

I try so hard to stay positive, and posts like yours really help. I think I am improving but it's just so painfully slow. Like you say, the small things add up.

I hope you get your smell and taste back. Xx

@isitorisntit Thank you for posting, so hugely pleased for you! 😀