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.

@fedupofbed such great news about your lungs! I’m taking a probiotic tablet but actually my sister in law recommended symprove so I’ll have a look into it, thank you

@fedupofbed great news

(Your results)

@Criticallythinking
**
“I have found it a bit sinister how quickly the narrative has become ‘this is CFS/ME’ and I worry about agendas from high profile people e.g. those leading ME associations writing articles about how we are joining their ranks (in the Guardian). I really feel for people with CFS/ME and have no doubt about the seriousness of their condition. But we run the risk of missing things about our particular long Covid conditions if we constantly say it’s about how much we rest and pace which is then our responsibility (and our fault if it doesn’t work) no one has actually shown that and we need more investigations”*

Completely agree with this - couldn’t have said it better.... and too easy to forget as well.

@fedupofbed
That must be really reassuring to hear, hopefully the physio can help now with reinstating your breathing practice to build up muscle strength in your chest and enable fuller breaths.

@MillStone thanks for your update, you must also be feeling somewhat relieved, though still largely in the dark on the specifics!

Hopefully more studies will publish their results soon and we will have some more tangible evidence and theories to go on...

That Cambridge University one on immune responses (or lasting immune ‘amnesia’ in response to Covid) will be an interesting one to see when results are out.

Well the WHO is saying it will engage with Long Covid and said they received the message in a bottle SOS film, I don’t think it’s being entirely overlooked.
It’s going to take years to research Covid and develop a treatment pathway for us. In the meantime there’s pacing - and it’s not a cure it’s a management plan.

I think the problem with long covid is that it is not one set of symptoms, but quite varied just as it now seems that the illness causes a variety of stillness.

I don’t know enough about CFS/ME to make an informed comment but I did find the information from the physiotherapists for ME quite useful about three months in when I was suffering from fatigue and the brain fog still. However, for me (and I appreciate I am lucky in this respect), that has mainly lifted and what I am left with is chest pain, which I don’t understand and does not fit a CFS profile. The pain is different from the shards of glass pain in the early weeks (months) and I agree to an extent with my GP who says it sounds muscular (but how? And what do I do?).

I spent yesterday walking around at an attraction and the pain was mainly when I was driving there and back and sitting down - was that just because I was distracted by things to see or because of something which has altered in my posture and breathing sitting or lying down? I am completely confused. Right now, there is a burning pain across the front of my chest through to my back and I am sitting on the sofa. What I am trying to say is that the pain does not seem to be directly caused by activity - but it did seem to be triggered again by talking for a couple of hours in conversation last Wednesday (activity for my lungs). However, before that I was pretty much running on empty with lack of sleep and quite a large workload so who knows? But also had a couple of days where I was also pretty much solidly at my desk during the day.

So I think a mixture of something with my posture and breathing (and proper sleep!) is where I am at for the chest pain rather than over-doing it as such (aside from the fact that talking seems to trigger it).

So confusing.

fedupofbed excellent news about the lung function tests.

@KatySun I get the radiating chest and back too. It's interesting that you mention posture and talking. Do you get breathless in this position too?

Since this started I have been the most breathless and in the most pain when seated in an arm chair or sofa.

I recently stumbled upon a condition called Vocal Cord Dysfunction. To the uneducated (me) our symptoms fit well but apparently it's rare.

www.healthline.com/health/vocal-cord-dysfunction#symptoms

I'm not suggesting we all have it... but the whole oesophagus / painful talking / reflux / chest pain / sore throat / PPI medication / gaviscon etc etc fiasco... that all seems to be getting overlooked compared to the investigations in to heart and breathing troubles.

Great news! @fedupofbed

I’m still not great since ovulation on Tuesday started. Just foggy headed and these damn paler lips 🤷‍♀️Didn’t get a chance to get an iron blood test but I’ll have to at some stage, feel quite weak and like I cba at all.
I got some B complex tablets yesterday.
My oxygen is always ok though and pulse seems fine. Some aching in chest/heart area and occasional aching arms and headache. It just seems like my body goes through every symptom again and again.
When I feel more with it and with more energy, my chest will feel quite tight but when I have other symptoms it won’t be there. Almost 6 months, weren’t people saying that was a turning point

@KatySun and @Millstone we sound very similar. I luckily do not really have fatigue. Just the chest pain and shortness of breath. It's much better and different now to the original glass or burning lungs. It does feel muscular I think and the same as you two the sob is often random. The only real pattern is talking definitely makes my chest sore and slight sob. I am trying regular walking with hills and the breathing exercises. With regular rest days if my chest doesn't feel so good. I seem to be stuck again at this stage.

@Kitcat122 yes I’m the same but with some added heart pounding. I feel past the fatigue now and my body and muscles feel stronger. I remember struggling to life a full kettle a few months ago.

In the past week I’ve decided to be less anxious about my daily walk and have started going further and including some hills — seem to be stronger for it.

Would really like the SOB attacks and pains to stop.

It sounds like there is progress for a lot of us, which is very heartening. I'm still living within about 30% of my usual capacity but I'm feeling hopeful things will improve in time - provided they are managed well.

DH has struggled to accept my being ill from the beginning, and going forward we need to look at the redistribution of my load as trying to carry on with things like cooking etc throughout has probably set me back. Having a young DD has meant I have to prioritise my time carefully and things like unloading the dishwasher, which take me several hours at times, need to be his job so I have more energetic for DD.

Thinking about what kind of support I need in order to return to work part time (and remote), e.g. ready meals, possibly a cleaner, etc. Any suggestions?

Oh and a report on supplements- the high strength vitamin B complex I take seems to have knocked out the worst of the fatigue/body aches. I feel tired but not deathly.

Taking the turmeric capsules for a couple of days coincided with my tinnitus reducing and being absent for certain parts of the day. This is a very welcome change so I will continue with turmeric . I was already trying to eat it a lot and had golden milk daily but the capsules seem to be more potent. I wonder if the tinnitus relates to inflammation and the turmeric is addressing that, hopefully!

Walked to park yesterday which was a big achievement, only possible because DH brought me lunch in bed and I could rest for a good couple of hours in the afternoon. I'll still keep it light today just in case.

@TiddleTaddleTat well done on the walk to the park. It sounds like you are managing a difficult situation well.

We have a cleaner and I would be lost without her. She couldn’t come during lockdown (obviously) and I found when she came back I could rest more. Don’t get me wrong it’s not a miracle change but she makes sure things are clean to a good baseline each week.

We have filled the freezer with meals from cook the freezer shop but it is pricey. We also get stuff from marks and Spencer’s but again it’s throwing money at the problem!

I’ve also made myself a rule no jobs after 6.30pm other than making dinner. Otherwise I spend all evening picking up socks and tidying up.

@Criticallythinking thank you, I don't know why it's taken me so long to think about ready meals and help in the home. I'm a bit embarrassed by the state of my house (mid renovation). I've never had a cleaner before but now might be the time.

@TiddleTaddleTat I only thought of it when a friend who has recovered from long illness suggested a freezer clear out. We have had a the same cleaner for years so it’s easier than finding someone but bet it wouldn’t be tricky to find someone at the moment x

@LetsBeSensible @TiddleTaddleTat @MillStone @Kitcat122 @Whatnext2018 @fedupofbed @AndsLee @KatySun @Egghead68

Hi all- some of you may remember me from weeks ago. I'm much better with relapses every few weeks but the children are still not better. I spoke at the WHO meeting (I'm in Long Covid SOS) about children- it was an amazing experience and they really listened. They want to work with some of us going forward - so there is hope!! I've not been in a while, since the film was launched it's been very busy. I hope you are all making progress albeit slowly and not in a linear fashion.

@godhelpusall I was just going to mention/ask where you were the other day, slipped my mind as most things do these days 🙈so glad to hear you’re feeling much better and the relapses are only every few weeks, can’t wait to get to that stage. How long do your relapses last and what symptoms do you have?
Sorry about the children, that’s awful, it’s always assumed kids shake it off easier 😢

@godhelpusall thanks for doing that...it’s such important work and doing it whilst feeling like this!!!!

@godhelpusall wow it’s amazing that you spoke at their meeting. It’s good to hear from you and great that you’re improving. Sorry your children are still struggling

@godhelpusall that's amazing. Wow, what an achievement especially when you and your children have been ill for so long - thank you! So relevant when children are soon returning to school. I'm glad you've improved and very sorry that your children are still poorly.

Hello everyone,
I’m glad to see some long termers making progress.
I am back to check in, for those who don’t remember me I was struck down in the last week of March.
I am at about 70% of my pre covid self now. I can have some wine, I can walk about 4000 steps a day. I managed lunch out today.
I still get breathless and dizzy on exertion. My O2 drops to 96 but that’s still within normal.
I’m still on beta blockers, I have been able to drop the dose a little lately.
Interesting that people mention the back paint hat radiates through to the chest. I get that pain in certain sitting positions, and if I wear a backpack.
But I know I will get to my pre covid self at some stage now.
My GP is referring me for physio which a few weeks ago I wouldn’t have been able to even think about.

I anahed to take DC to the beach on Saturday morning, only for an hour, it was stormy but beautiful to watch the waves crash & then out again yesterday for 2 hours.

I think this is the first weekend where we have done something 2 days in a row.

Saturday is usually a write off, due to fatigue because of the week.

Im sitting here with my ears ringing like a 1970s t.v set at midnight, when it used to switch off.

Thanks everyone again for always being supportive, and lets hope we are going to see this tail off as soon as possible

anahed - *managed FGS!

@Criticallythinking
Thank you for hope and reply
Sorry for late reply,my phone wasn't working(screen broke)
Yes I m trying to take day as it comes.
Pushing my GP to do more test.
Other symptoms comes and goes but burning upper back and now it started whole body like legs,hands.
And it constant now.
Please can someone tell me any medicine I can take or test I can ask my GP to send me.
Will pray for everyone here to speedy recovery.💐

@Crayfishforyou good to hear from you and glad that you continue to improve - and also importantly that you know you will get back to full health.

@Ernieshere it looks like you're improving too though gah that tinnitus sounds awful. I hope it helped mentally to make it out to a beautiful uplifting place. I'm craving the sea, and depending on my health and whether or not we can fit it in, DH might take us next weekend. It's about an hour in the car but he can park right next to the beach.

I feel like I've moved into another phase of illness - the boom and bust! I've become slightly intoxicated with my improvement and just keep overdoing it then crashing again. I know I'm pacing dreadfully but I keep getting excited about being able to do more. My mood's all over the place too - either on a high or crashing low. And the goalposts keep changing - I'm still just as frustrated and anxious as I was when I was really ill and have to keep telling myself how much I've improved. But this is all progress for me.

@Beautifulpeople I'm sorry about all your burning feelings and really hope you can get some help from your GP 💐.