Long Covid & Pleurisy

[Breezyweeze]

Evening, I am new to this group & having read some posts it seems i have hopefully come to the right place.

I first had covid in Oct ‘21, i was quite poorly with it, my oxygen levels dropped to 82, the doctors think i lost consciousness, i have never experienced my asthma being so bad, i coughed so much i fractured my ribs.

A few months down the line i was still experiencing breathing problems, headaches (excruciating) & unreal fatigue. Doctors told me it was likely i had long covid.

In Aug ‘22 i had covid for a 2nd time, thankfully no where near as bad as 1st time!

I’ve have spent a year now with long covid, mainly suffering with breathing (asthma) issues & extreme fatigue. I have had a number of infections over the last year and now again fractured ribs, inflammation of the muscles around the ribs & pleurisy.

I’d really love to hear from others that have experienced similar to myself, i really feel like i’m at the end of my tether, any advice would be greatly received. x

[Katinka46]

Welcome to this forum. It is friendly, informative and very supportive. There are one or two here who have had long term effects of Covid, I am sure they will pop up and offer you help and advice. The problem — as I am sure you are aware — is that an understanding of the effects of Covid is very much in its infancy. I do hope you are being looked after and followed up. What scans have you had? I am interested because there has been some research using Xenon Gas MRI scans on some patients who have long Covid.

All the best and please tell us how it progresses.

K x

[Breezyweeze in reply to Katinka46]

Hi Katinka46

Thank you for your reply.

I have only so far been offered x-rays both times after covid & bloods, all came back normal.

I’ve just finished a course of steroids but there is little to no improvement.

I have been referred to a Respiratory Specialist and am awaiting an appointment. I believe from what i’ve heard that they may scan me!?

I’m going to try & speak to my doctor tomorrow & see what she suggests next! x

[Daisychains01 in reply to Katinka46]

Haven't they done scans? Do you have lung scarring?

[eleanordigby]

I’m fairly new here and thankfully have avoided covid but just wanted to say hi and that I really sympathise (especially about the pleurisy and broken ribs - unbelievably painful). From what I’ve read, the signs are the extreme inflammation of long covid resolves eventually in nearly everyone, but the whole uncertainty about if and when must drive you nuts! A few weeks ago natswright was posting about her long covid journey. I’m sure she won’t mind me tagging her here. Does a CT scan show any permanent damage?

[Breezyweeze in reply to eleanordigby]

Sadly no CT scan offered yet, but hoping my referral to a Respiratory Specialist will include this! x

[Daisychains01 in reply to eleanordigby]

Actually, inflammation can cause scarring, and if someone has it bad enough, it can have permanent damage. The same goes for any of the other pneumonias. Left untreated, they can cause scarring.

[eleanordigby in reply to Daisychains01]

you’re right, of course - in fact I think poorly treated childhood pneumonias permanently damaged my own lungs - and from people I’ve come across in hospital it’s clear some gps don’t know the difference between a chest infection and pneumonia! this must be happening more & more with gps refusing to examine patients in person!

[Daisychains01 in reply to eleanordigby]

But why do they refuse to treat people with COVID pneumonia? That's the practice in the US. Of course it probably varies from hospital to hospital. But this was our experience. Down right evil I say.

[Patk1]

I was ill and on antibiotics and steroids for over 3mths in April 20.since then,over past 23/4 yrs,I've deteriorated In all ways.it has taken 21/2 YEARS to b heard.i even had a go ask " what do u expect ME to do" at 9mth in!! I've now had an appointment at long covid clinic.please get help,dont suffer in silence. Also,protect yrself with masks and hangel+ avoid colds,flu etc

[Breezyweeze in reply to Patk1]

Thanks Patk1,

Sorry to read your story, it really is awful isn’t it!?

I’m glad you have got an appointment now. How did you get an appointment with a long covid clinic, i didn’t know they exsisted!?

[Patk1 in reply to Breezyweeze]

Consultant requested Gp make me a hospital appointment with the clinicians at long covid clinic.hope u can access help x

[Patk1 in reply to Patk1]

I forgot to say I've severe levels of multiple complex lung diseases incl severe unstable asthma already, so early covid,plus repeated nasty infections since,have caused untold problems.long covid clinic were v gd

[Daisychains01 in reply to Patk1]

Do you have breathing issues? Fatigue?

[Patk1 in reply to Daisychains01]

Yes.i had fatigue previously,but it's worse.major breathing issues already,worse since.do seek help x

[Daisychains01 in reply to Patk1]

Do your scans show scarring?

[Patk1 in reply to Daisychains01]

I've just had a scan after insisting.havent got results yet.its taken me 23/4 YEARS

[Alberta56]

Welcome to the forum. I've not had long covid, I'm thankful to say, but it seems to me that after any illness we lungies take a long time to heal. I think we just have to be patient (huh!) and very gentle with ourselves. Rest when you can, take a little, very gentle exercise when you feel up to it. I hope you feel you are turning the corner soon. Coughing that badly sounds absolutely gruesome. xxx

[GintyFerguson]

Welcome! Sorry I cant help with long covid. I've managed to avoid covid. That in itself has a price . However, I hope you manage to steer your way through thus and out the other end in a better place. Good luck.

[Lutontown]

In Nov 2019 I spent 10 days in hospital due to Pneumonia and Pleurisy. Had loads of antibiotics, and 750ml of infected yellow fluid drawn off from my chest cavity. The pain in my side and chest was about 8 or 9, and because of that my breathing was quite shallow. I believe that experience may have been the cause of my Heart Failure, with which I was diagnosed having after that. I hope you have been seen in hospital, as you need looking after and irreparable damage can be done.

[Breezyweeze in reply to Lutontown]

Thank you

I really hope you are on the mend!?

Sending hugs x

[peege]

I'm so sorry to read of your long covid Breezyweeze. In 2021 medics didn't know much about long covid it's only now that they're dealing with it properly. My 6 year old granddaughter had long covid after catching it in April 2021, it was horrendous poor child, she missed many monthsof school when they reopened. 7 stints to A&E with no help, once they were in an empty A&E for 7 hours, everyone was so busy dealing with covid cases. Finally they went private.

Anyway , do click on natswright's name eleanordigby has kindly given to you, you'll see all her posts with replies which you may find helpful. There's also the helpline number above open Mon to Fri 9 to 5.

A warm welcome to the forum, many many members haven't had covid simply because we've had to be so careful with our various levels of various lung diseases in avoiding everyone with a possibility of germs also many of us were shielding hence only a few with long covid.

All the best, P

[Breezyweeze in reply to peege]

Oh my, your poor granddaughter 😢 it hard enough for us adults but for a child!

I hope she is getting better now!?

How did you find going private, it may be an option for me! x

[peege in reply to Breezyweeze]

Luckily my son in law had private health insurance for the family with his job otherwise I don't know what they'd have done as it took well over a year for her to get back in school and then only half days as she was wiped out. She's just about alright now .

I've had a little think and if I were you I think I'd first see a private GP, I think you'd have to give an idea of why you need an appointment, this will give them fair warning to know you have long covid. Gives them time to do some research on whats out there for you. You should get a half hour appointment - at oast that the way my local private gp practice works. I've given up on my useless NHS surgery and will probably see a private gp. Let us know how you get on wont you. P

PS for pleurisy and fracture rib pain, a rolled up towel held underarm on the affected side really helps. I've had both (not on the same side), a tip I had from a physiotherapist and it really works. P

[Daisychains01 in reply to peege]

I'm tired of hearing them tell us they didn't know anything about COVID... they have known for a very long time that it can cause pneumonia, and ALL pneumonias need to be treated immediately, with either steroids or some antibiotic. Neither were being done. I have spoken to numerous doctors since then that the "do nothing approach" is what killed people or made people very ill. It was the wrong approach. But I want to know why they took it? My friend's aunt had a rare pneumonia a few years ago and they treated her with steroids. Why didn't they do this for everyone immediately. Unfortunately, I have experience this first hand so it's true that this was happening. We cannot wonder why there were so many deaths.

[Izb1]

Welcome to the site Breezyweeze. Sorry to hear of your struggles with long covid, as Alberta56 says us lunggies take a long time to heal, be gentle with your self and plenty of tlc. I do hope you get better soon x

[watergazer]

hi and welcome breezywheeze. I can vouch like many others that any respiratory illness to us already with lung problems takes a while for us to recover. I haven’t got long covid so can’t help you there. Natswright posts about her long covid journey. Her diaries may be of help to you. Take care xx

[Hidden]

Hello, I am only on day 7 of my first time of covid but some of what you describe I have had with my asthma many times over the years without covid. Pleurisy is horrible as is fracturing ribs by coughing. You are going to need a lot of patience. Your body will take a long time to heal from the coughing and that is without the covid.

Are you on pain meds for the ribs and pleurisy? It is important to get the pain management right other wise the pain makes your asthma worse. Beware the pain meds can also cause breathlessness.

It really is a vicious circle.

Each time you get unwell you will be back to square one and re enablement.

[Breezyweeze in reply to Hidden]

Hey JulieVictoria

Thank you for taking the time to reply.

I hope you are not suffering too bad with Covid?

Patience is very difficult for me, i’ve always been a on the go person & i don’t really have an off switch so as you can imagine i’m close to losing the plot! 🤨😬

Pain management is paracetamol & ibuprofen! Maybe i need something stronger as it doesn’t really help!?

I plan to speak to a doctor tomorrow as i’ve just finished a steroid cycle and there’s not really any improvement!

Hope you are resting x

[Hidden in reply to Breezyweeze]

yes you may need something stronger. I cannot have ibrofen with my asthma at all.

It is hard to stop but you have to unless you want to be worse.

I am laid on the sofa trying to shift a stubborn migraine. Will be moving to bed soon.

I have the radio on because I can listen to it with my eyes closed.

Let me know how you get on with your GP. I have my GP ringing me tomorrow too. I want him to listen to my chest with a stethoscope because I think I have a lower base crackle.

Rest seems to be the new way. Take care!

[Daisychains01]

Hello. My dad has what they refer to as long covid even though I call it leaving pneumonia untreated. He went to the ER and they never told us he had covid pneumonia and never treated it. Anyway, it's been nine months for him and he has breathing issues and extreme fatigue and no appetite. He can't seem to get off off prednisone. When he gets down to 5 mg the fatigue and appetite worsen. He is currently doing laser therapy, and now looking into PRP via nebulizer. Possibly stem cell therapy. We need to look to alternative medicine because the mainstream medicine is not doing anything. Did they tell you that your lungs are damaged?

[Patk1 in reply to Daisychains01]

Has dad been seen st long covid clinic x

[slram]

Had pneumonia for 7 months-not Covid related-but had pleurisy after. A nightmare. Afterward, pleurisy. Someone told me they had pleurisy and one day they woke up and just like that-it was gone. I thought it sounded crazy, but it was true. Lost my strength, have balance issues now, and am slowly trying to get back to normal again but it's a long road to go. Hang in there. This is now a year and a month later. Getting there, don't fight it. Your body will heal.

[Numptybrain]

I feel your pain, I too have fractured ribs before ouch it hurts, in fact I fell I the garden yesterday and unfortunately hurt my chin and chest, my daughter took me over to hospital as I have osteoporosis and luckily no broken bones but my pleural effusion is a lot bigger than 4 days ago and has a nasty infection, anyway I’m going off subject. I looked at all sorts of bed wedges, supports etc but in the end the only thing for it was an electric bed which we were lucky to get for £300 second hand but immaculate superking so hubby gets the benefit too, it’s brilliant, it raises me up to sit my legs can be raised and I can sleep with my head raised ( which is what I need). Maybe worth thinking about?

Good luck

Wendy xx