COVID Lungs 8wks plus

[baroqueandblue]

Saw the previous thread is almost full. Hope I've not duplicated a new thread! And I might not be the best person to be custodian of this one, so feel free someone else to start a replacement and I'll get this deleted. Otherwise -

Here we all are, at least 56 days plus 😕

@Kitcat122 Same here. Have you had any tests? I had X-ray, bloods, ecg, all clear.
I don’t think it is GERD @pinkoneblueone @AndsLee. I have been drinking hot water with ginger for 12 weeks now! I have nausea in the morning followed by a toilet dash, and thought maybe that nausea was GERD related but I think it is more the toilet rush related.

@needsomegoodies

I have this going on! Rash is on my chest and hands. Especially over the last couple of warm days. Not so much today, but it's cooler! As in your case, never had this in my life!

Do you think burning chest is acid?

Hey guys, I've not been posting too much as I'm still recovering away steadily. I don't want to come across like I'm being smug or make anyone feel bad when they're down. But a few people have posted today about wanting to hear about recoveries. I'm not 100% better but I'm doing lots and lots and getting so much better. I have very little pleurisy pain, some costochondritis if I aggravate it and am still taking the pantoprazole which is keeping my GERD symptoms mild. Still can't wear an underwired bra.

Yesterday I mowed my big back lawn again and then I brought the mower out front and finally did the front. The front is difficult as it's sloped and the lawn is banked above the drive and I have to lift the (heavy petrol) mower over a wall before and after mowing. Then I got the wheelbarrow and weeded an entire barrow worth of weeds. It was so hot that I could literally feel the streams of sweat running off me, so it was physically very full on. Then I went shopping in Aldi and forgot my bags so I did the whole shop carrying a big cardboard veg box around instead of a trolley and bags. Today I woke up with a slight costochondritis sternum pain that went away with ibuprofen gel.

Just enough pain to tell me more gardening or chancing a skate would be a mistake. But not enough to stop me from giving myself a pedicure (had to lift my foot up to me as if I bend over toward my foot I feel the GERD.) Chopping off most of my hair, layering it and dyeing what's left. Having two walks and bathing the dog. I haven't tried any actual exercise yet because I think I can either do the jobs around the house/garden (and the self-maintenance) or exercise but not both. As I'm a single parent the place has gone to shit over the last few months so I need to be a grown-up and do the jobs first. But I feel really confident that as long as I'm careful and listen to my body I'm not going to relapse. I think I'm capable of so much near normal stuff now that I'd have relapsed (again) already if it was going to happen.

I strongly recommend that anyone who isn't being treated for GERD to think about asking their doctor if they have the symptoms of it. I thought for ages that I definitely did not have GERD, that the sternum pain was only costochondritis. But since I've started taking the pantoprazole my recovery has totally accelerated. It's also helped me learn the difference between the GERD pain and the costo pain, which are similar but different, so I understand better what I need to stop doing.

Oh and just in case anyone was worried, I did take a shower between having streams of sweat running off me in the garden and going to Aldi!

@alittleprivacy great news, thank you for posting!

Thank you @alittleprivacy

@Moodgie no tests my doctor has not bothered with anything other than time and rest 🙄

Although to be fair I was much better and improving for weeks until last week

@fedupofbed I just rely on you to post any major news from the slack groups (no pressure)

That’s brilliant @alittleprivacy

Morning all, hope you’re well,

Just checking in with yesterdays apt. Hopefully it will help you in accessing your own care / tests.

It was brilliant appointment, it lasted over an hour and the infectious diseases consultant was patient and didn’t need convincing.

They listened to my timeline and asked questions that were precise and relevant — they knew what they were looking for. I mentioned I was in contact with other people with the exact same symptoms and timelines and got a very reassuring “yeah don’t worry, I get it”.

They performed various physical checks I had yet more blood taken to rule out some very obscure diseases.

They concluded that it was most likely due to a viral infection and, considering the timeline and symptoms it was most likely Covid. However… because testing wasn’t available then and antibody tests are currently unavailable / unreliable now, they shouldn’t diagnose this because it would be bad practice. That seems very fair and rational.

Next steps is to attend another hospital for another ECG, a heart ultrasound and a pulmonary test. They put in a request for a CT scan with imaging of my lungs but has to await the decision from the powers to be.

They said they’re looking for heart function issues and possible clots in the lungs. Then added that ordinarily they would discover clots early on and prescribe medication to help the body eliminate them… but as this has been 9+ weeks it may no longer be the best action because my body will be naturally removing them. They are going to check with a haematologist.

When asked if I will recover, I got a very confident yes, no reason to think otherwise. They said most of the pain, symptoms and tiredness you have can be attributed to post viral fatigue and recovery from this can feel very, very slow and painful but you will get better. This feels true, I am (we all) are improving but it’s very, very slow (and shit).

I have another appointment with them in 4 weeks, by which time I will have my test results and hopefully recovered a fair bit too.

@AndsLee When asked if being contagious is still a possibility, I got a quick no. prior to symptoms and for the first few weeks yes… but now, no.

The conclusion was to treat this like post viral syndrome for the time being because there’s no harm in doing that. I was pointed in the direction of Dr Phil Hammond, who at the time couldn’t place but having looked I did watch a movie of his about 7 weeks ago. The consultant said his advice is perfect. The movies were floating about on here about 7 weeks ago and I totally forgot. Here is one agin if anyone missed it:

I was advised to stay in my limits. Don’t just sit around and fester, do move around, take gentle walks, yoga if you like..., but don’t over do it as this will hinder recovery.

Hope you’re all having a bright start to the day,

@millstone

Thank you for asking... It is humbling how a complete stranger will extent such kindness. I'll never forget that.

@MillStone

Hmm...mind you, I went through a 2nd bout of symptoms starting on 7 May. That was 4 weeks ago. I wonder what a "few weeks" means? Or do I count from the first symptoms in March?

@MillStone
Sounds really positive, doesn't it?? Xxx

Your appointment sounds so useful of reassuring.

I hope people are mostly doing ok. I was only on here for a short while a couple of weeks ago. I wondered if I was post viral as i felt like I was breathing in dust for weeks, felt exhausted on and off, constantly clearing my throat and one of my DCs was poorly for a week with a high temp and lost sense of taste for two days. But now I'm wondering if mine was GERD all along. I've seen people mention GERD on here but can that be a post viral thing linked to a virus or is it usually just separate? Mine seems to be silent reflux affecting my throat (making it dry and scratchy). My clearing throat thing that I had for nearly 3 months has gone though. Overall I'm alot better but still curious as to what it was. Now just having gaviscon and rennies to try and get rid of the dry and sometimes burning throat feeling.

@MillStone thanks so much for that. It sounds very reassuring and supportive to have been so heard and have so many tests etc Hopefully eventually all people in our situation will have that. Did they share any new understanding of covid? What obscure diseases are they ruling out? Did you suggest being a case study for them so they could learn more about protracted cases?

and reassuring

@andslee sorry you’re getting the random rashes too -I’m assuming if they come and go rather than staying I shouldn’t worry too much (but will mention next time I speak to GP)

@MillStone that’s a reassuring update that things are being taken seriously. The more this happens the sooner there will be answers.

@alittleprivacy great progress!

Great news @alittleprivacy. Thank you very much for the update.

@MillStone
Your appointment sounds amazing. How did you access it? Was it NHS? If so, do you mind letting us know roughly where in the country please? Pleas ignore me if you have already posted this.

@PrimalLass it sounds like you had a reasonable period of recovery then before relapse of symptoms?

@AndsLee thanks but please don’t mention it! your results are intriguing, surprised the people who requested your test didn’t follow it up. Contact them maybe?

@godhelpusall thanks, I got the impression the consultant only wanted to discuss what was known or proven, so I didn’t really enquire about speculation, if that makes sense.

I did however say that it felt like someone has pulled all the wires out my brain and plugged them in different sockets and that stress and anxiety signals were All over the place. He said this is doesn’t sound mad is plausible.

He also said everything could be an auto immune response... but my body showed no inflammation at all on my last bloods a couple of weeks ago, which is why he suspected post viral.

Other tests were for really random things, I only remember a test to see if I had glandular fever as a very young child! My doc did a general glandular fever test a few weeks ago but apparently it’s possible to have it as a young kid and never display. Maybe something about displaying again years later... sorry can’t recall... but it was a test to eliminate things that can be tested for, if that makes sense.

My gp also tested for loads of things prior to referral. I forget what... but it was 7 tubes and about 20 tests including hepatitis, hiv, lead poisoning, nutrition etc etc.

Yesterday the consultant’s nurse took 6 tubes to look for about 15 things. Some were repeat tests for inflammation and cell counts I think.

A lot to take in and was also very zzz

I would say that I've had long and drawn out mild-ish symptoms that add up to a very boring couple of months. Coughed for around 7 weeks, on and off. Back to the exhaustion this week and my mouth feels very swollen/numb.

I had maybe three weeks of feeling much better.

I already had costochondritis so this has made it much worse. I type/mouse all day and it's making work difficult.

Very glad my feet are better as that was freaking me out.

Hey @Egghead68 thanks, I hope you’re not too tired after your appointment. I am! Bit worrying visiting a hospital too.

Yeah I feel really lucky and grateful. I’m in Sheffield. I think we have one of the biggest infectious diseases departments (I need fact checking). Some of the first UK Covid cases were brought to it for quarantine and assessment.