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.

Evening everyone- checking in to the new thread. Thanks for starting @LetsBeSensible.

Hope everyone is as well as they can be?

After feeling like I was 'on the home straight' a few weeks ago, I've relapsed. It's hit me hard mentally this time and I've had some very very dark thoughts. The sleep disturbances, tinnitus and brain fog have been off the scale. Chest pain has returned.

I've come through it and decided I was overdoing things massively and just hadn't realised. My energy levels were up and my symptoms receding so I pressed on towards a normal life. Big mistake!

I'm now resting resting resting and drinking lots of water and back on ibuprofen. Eating 12 portions of fruit and veg and TRYING to stay off sugar so we'll see how things go.....

Not off the Covid merry go round yet!

💐 for all of you still suffering.

5 months this Sunday.

Still so many symptoms. Every single day.

@isitorisntit That’s fantastic news! 👏 I can’t imagine jogging, mainly because I’m scared what will happen 😬will my chest become really tight, will my heart be ok..will I feel terrible the next day..I’m just scared all the time, when in reality it may be ok.

@fedupofbed What will the H.C do, do they say?

@Norugratsatall Sorry about your relapse, I’m a similar way, I seem to be doing well for a fair amount of time, then a bad phase hits and it seems so intense. Looking back though, the bad parts are less and for less time. How many weeks are you?

Those with period changes, do you actually bleed as much? (Sorry for tmi) I find I’m not actually really properly bleeding. I don’t understand how periods can be affected

@Norugratsatall hi, sorry you’re also in the relapse club.
It’s so much worse than an ME relapse. People can hear a wheeze when I speak. I’m going to be on strict house arrest for the next few weeks.

Thank you @Whatnext2018 and @LetsBeSensible.

I thought I'd seen the last of it and psychologically it was hard for symptoms to re-emerge. I'm 21 weeks.

Sorry @Ernieshere. I seem to recall you were a fellow tinnitus sufferer. Dare I ask how it is? Xx

I'm still here, (12th March). My worst symptom now is the fatigue. It is never ending. I also still have burning in the chest and quite severe pins in needles every day in heart area. They are come out of nowhere and are very intense for a few minutes at a time, then disappear. Then repeat.

Oh and heart rate issues.

I also have pain in right calf and when I squat down or bend my leg, I get really bad pins and needles in it.

Waiting on a chest x-ray, ECG was normal.

Did anyone watch the programme on BBC 1 tonight, with the two brothers, I think they are both doctors. One has on going problems after covid. An issue with his heart.

Wishing you all better days.

Maybe if it gets out more into the media via ‘Famous’ people, it may make a difference 🙏

There was a pic of her to accompany it, can’t seem to do it 🤷‍♀️The story sounds b similar to lots of us.

I was on those first threads under a different user name. Symptoms started 17th March.

In terms of the fatigue and the horrible GERD and palpitations, I feel fully recovered - stopped the esomeprazole about a month ago. I can now walk my pre-Covid distances (6k with no trouble) and I feel ready to restart strength training in the gym.

I'm still using the preventer inhaler my Dr prescribed which helped massively with my breathlessness. Last time I spoke to my GP she said they were still not doing lung function tests - has anyone had one?

Good luck to everyone still on the road to recovery

I wonder what kind of tests Alyssa Milano had that failed to give a positive? Twice!

Hope you all get back to full health.

@Whatnext2018

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!

I had symptoms in early March and feel mostly ok now except my heart rate shoots up probably only once every 10 days or so.

I can't feel it and only notice it on my fitbit app later in the day. The highest has been 194.

Normal moderate exercise e.g. jogging up a hill might get me to 145ish.

Has anyone else had this - other than the doc in this programme - and do you think I should mention it to a doctor?

@LatinforTelly, I think most on here have the raised heart rate. Mine is still like that every day since 12th March.

It shoots off as soon as I get out of bed, stays like that for an hour or two, settles for a while then races sporadically throughout the day.

Thanks @RhythmoftheEgg for your update!
I even got “covid calf” again yesterday. Also it’s time for Aunt Flo to visit so that won’t help.i think the pacing and extreme rest is helping. My heart rate does shoot up but not to crazy levels. Can easy be 100 when sitting resting though.

I’m still struggling at over four months. Breathless at 200 yards, only sleeping for 2 hours at a time, due to having to keep clearing secretions from my chest, muscle weakness, fatigue.
I had a pulmonary angiogram 2 weeks ago, and it showed covid induced microangiopathy- damage to the small blood vessels in the lungs that pick up oxygen from the alveoli and take it into circulation.
Nobody knows whether that will progress until I die of respiratory failure, remain static at this level of disability, or recover with time.
I live alone, and it’s hard to keep positive. I feel I’ve lost 20 years of my life and been turned into a frail 80 year old overnight.

Oh gosh @Babdoc I am so sorry. Fingers crossed it is not permanent xx

@Babdoc

I remember you from the first threads I was following- so sorry to hear this. I really hope that it improves for you.

I’m still struggling almost 5 months in. Haven’t had one normal day, and although walking about a bit has become easier I’m finding anything more than 10 mins on my feet puts me right back. My main symptoms now are fatigue and high heart rate. I’ve had a clear 72 hour halter monitor test and chest X-ray and ct scan but last week I had a blood test which showed ‘slightly raised’ bnp levels so I am now having and echocardiogram next Thursday. Very scared again now, I just can’t believe that 5 months ago I was running and lifting weights and now this. Huge mum guilt too as I can’t physically do much with my whirlwind 2 year old and my 6 year old has missed out on so much...

Wishing you all better days soon xxx

@Babdoc So sorry you’re going through that, how did they come to investigate that, chest pain?

@LetsBeSensible Had no idea it had a name ‘Covid calves’ I get it regularly, mainly on the right calf, it always worries me due to dvt

Thanks @Tootsey11 and @LetsBeSensible.

Sorry for what you're going through, Babdoc. That sounds terrible.

@babdoc sorry to hear it’s so tough for you. Remember we are always here for a moan or a chat. Well someone is usually here. I’ve been off in a grump myself recently. I also live alone and it brings it’s own challenges. Although I did go to relatives for a few weeks and honestly it was mentally draining. If they’re not “forcing” you to do activity “for your own good”, they’re telling you how upset it makes them that you’re ill sigh

Whatnext, no, I haven’t had chest pain. I was CT scanned because my breathlessness had got very much worse and the chest physicians thought I’d had a pulmonary embolus. The scan was to exclude that, and it picked up the angiopathy. Initially I was relieved not to have a PE, but actually that would have been treatable with anticoagulant. There is as yet no treatment for Covid angiopathy and no long term prognosis as it’s a new disease.
The consultant did say they were finding “stacks” of patients with these post Covid lung problems and were trying to set up rehab clinics and research facilities, but it’s early days and not much practical advice yet. I was just told to go home and try to keep gently active within the limits of my fatigue and breathlessness. I’ve had to hire a gardener, I can’t even mow my own lawn. For 6 weeks I had to get friends from church to do my shopping for me, but I’m now trying to do my own as a way of keeping some small level of activity and preserve my muscles.
I’m so sorry for everyone going through this. Surviving the acute infection is a doubtful blessing when one is left so disabled and unable to enjoy a normal life. We can only hope that it will slowly improve, but it gets harder to keep hoping with each month that passes.
To add to my joy, the council have just said they will run pneumatic drills outside my house daily for a fortnight to resurface my road! I’ve been having daytime naps due to the insomnia and tiredness - that will be impossible in the ear splitting noise. I am planning to move out to a holiday cottage but will find the driving and upheaval exhausting. Life sucks sometimes, does it not!

@Babdoc So sorry, loving thoughts going your wayxx

@Babdoc Oh I’m so sorry, I hate how this is affecting everyone, I really hope things improve for you, they need to help us on all of this now!

@Whatapickle78 sorry it took me so long to reply I’ve been fighting a stomach bug

I haven’t had any nerve conduction tests done. My pain was intense and situated at the crook of my elbows and wrists, and shoulders but I also developed stiffness in my hips and hands so my GP felt it could be joint related - I saw the rheumatologist who then said it sounded like nerve pain. She did a lots of scans and blood tests to rule out other viruses and/or conditions and all that came back was low calcium.
Really reassuring to hear via this thread that the pain should go when the nerves heal, assuming that’s what it is. GP is reluctant to refer me to neurology as they haven’t been hugely helpful so far... I am still taking gabapentin for the pain and like you feel it worse at night time. Fun times. I’m going to wait until I’m over this bug and then talk to GP again. Hoping the bug doesn’t bring on a relapse.

@Babdoc I'm so sorry for what you're going through. Sending love and strength. 💐

@Whatnext2018 hydroxychloroquine can be helpful for autoimmune conditions so the rheumatologist said it's worth trying in case that's what I now have (although the probability is I don't) as there are minimal side effects.

I can't share a link because of the paywall (and also because we're probably all sick of reading about it!) but Covid long haul made the front page of the Telegraph today.