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.

We’re seeing people with the same symptoms we had who have recovered fully, right?! 🙏
Is it just dependent on our bodies and a case of waiting?
Any success stories, please come back and give some positivity.

Hello everybody
I’m celebrating my first day of 5000 since before I got ill in March.
I have days where I feel a lot more like me now. I try to do things and feel surprise that it hurts under my arms and in my chest.
My tinnitus is so background now, and the dizziness has stopped completely.
I vacuumed the whole house the other day, for the first time since I got ill . I feel as though I have gone through the toughest assault course, everything hurts!
But the panics, the shakes, the random scary bouts of tachycardia haven’t come back. The heartburn has died down.
I am sleeping flat again and not waking up gasping for air.

@Whatnext2018 I do feel that tiredness has a massive impact yes! But it's difficult to address that if you're suffering from intermittent insomnia as I am. I do t have periods any longer (too old!) so can't say what effect they have but they must interfere with the body's natural rhythms.

@Crayfishforyou that is good news! I'm so pleased to hear this! Long may it continue. As a fellow tinnitus sufferer, what did you do, if anything, to calm it?

I don’t sleep very well either, mainly due to work related stress. I have averaged about five and a half hours for the last five days. I am not sure it exacerbates symptoms so much as walking up any kind of hill and/or talking, but it surely cannot help matters.

At the moment, I have quite noticeable chest which is like having a skewer through my left breast - it is very localised. Whereas the pain from talking seems to go across my chest and back. It also seems to be worse when driving (although I have not been driving as so too little sleep!).

So basically I am managing to do a lot but I am in pretty much constant pain to varying degrees. I did speak to my line manager who has taken some stuff off me but I still have at least five weeks of crazy workload to go before it makes a difference. So I have not been posting as too tired, busy and also because I feel like I cannot complain too much about symptoms when I hardly have any time to rest. I don’t think I am really getting a chance to improve any further at the moment.

But it is also because sitting on my laptop also feels like the easiest thing to do. Everything else takes too much effort. I need to make myself go out for walks - I was doing at least twenty minutes a day when the DC were still at home and now I am literally just working. I think it is worse when I don’t exercise.

Sorry for the long message all about me.

crayfishforyou so glad to hear your tinnitus has gone, that sounds like a dreadful symptom.

*chest pain

Lots of similar issues on here. I too get the awful sensitivity to sound with my relapses, also nausea and dizziness. Moods are all over the place and I get the skin burning @AndsLee . Currently feeling OK apart from crying a lot but dread the next hideous relapse. I am signed off for two weeks but due to start in person lectures then, not sure how I will manage that especially if I'm relapsing.

@Norugratsatall
Nothing, I just have to wait it out. I have noticed that when I am pushing it too far or I’m tired, need to eat etc that the tinnitus ramps up.
Loud noises used to sound like glass smashing in my head, it was awful, and it doesn’t so much now. I jump at sudden noise a bit. I swear my central nervous system is still freaking out.
I think everything is starting to calm down, I had a slight run in a couple of weeks ago and it sent me back to bed for a week. But not as bad a relapse as in the past, I was mainly just exhausted and had to up the beta blockers.
The only thing that helped was doing nothing except the absolute essentials for weeks at a time, even when I felt better.

Morning all
I think someone asked about tinnitus ?
Mine has largely gone, except for when I am stressed/tired etc. I credit its reduction and eventual tailing off to the high strength turmeric capsules I started taking about a month ago.
What helps for me? Rest rest rest, minimal exertion, avoid activities that raise my HR, lots of mindfulness/deep breathing, supplements I've mentioned, avoid stress.
Reduce expectations to near zero.
It's not easy !

Oh and pacing. Absolutely essential for me.

Morning, hope you're all okay.

Not much going on here but just a little check-in. At almost 6 months my persistent symptoms are SOB, palpitations, back and chest pain, no energy, low mood and head ache / tinnitus when tired.

Sleeping is still difficult because I'm constantly waking -- half the time with SOB and a tight chest. A few days ago I bought a new mattress which has actually helped a bit.

Last week I had a consultation with a (western) herbalist and have since started taking my prescription. Feeling positive about this.

Thanks @Crayfishforyou and @TiddleTaddleTat that's all very helpful. I have now started taking turmeric so feeling hopeful! 🤞🏻 it's just so awful at night (never used to be, used to settle at night weirdly) and my sleep is so disturbed and sleeping pattern all over the place which is obvs not good for work and overall recovery.

Never mind, we battle on. 😊

@Whatnext2018 sorry for my delayed reply! I’m 26 weeks since first Covid symptoms and around 23 since it all kicked off (I had a very mild 3 weeks first) so we are definitely similar in trajectory.

Hope you are feeling a bit better today? I managed to sleep but still having the pain in my arms. No sign of period either which is odd.

I did get test results from GP about my gut and inflammation levels now normal which confirms I did have a bug of some sort. However my body’s insane reaction to it was presumably a long Covid thing...

Worked out, I'll be 26 weeks on 17th September.

I can't really complain when I read the plights of some of you on here. I don't seem to have the crippling fatigue. My main issues are the burning skin, still, but I have been using this hemp, camphor and menthol gel that has been helping. This makes me think it's definitely nerve related. The cooling sensation of the gel takes away the pain, tricking the nerves. My GP has more or less confirmed this.

So, what I have learned so far:

• the breathing through dust sensation I am sure is caused by gastric issues, silent acid reflux. This is definitely getting better over time. I think the Omeprazole was the turning point on this. I have stopped taking probiotics, I think I need to let my stomach do it's own thing now. Can I ask, has anyone had the camera down the throat at all? I think this is actually what I need. I did have an untrasound, all looks OK, except the found a "hemangioma" on my liver. I believe it's nothing to worry about... I have developed a weird breathing pattern disorder, probably because I feel like I have been breathing through dust for the last 5 months. Seems to be easing too though. I just wish they would resolve completely though.

Heart is OK - ectopic irregular heartbeats - nothing to worry about.

No deficiencies, my ANA test was clear. So...why do I still not feel quite right??? Why can't I seem to trust that I am healing? I feel insecure in my own body, and this I think is the most difficult thing to cope with.

Don't get me wrong, I don't feel low, or blue or anything. More frustrated. I feel I am soooo close to normal, but constantly looking over my shoulder to see if something else is going to come and clobber me. I guess the only thing that will heal that is time...

Hope you're all doing OK...? xx

How are you @fedupofbed ? You were worried you had done too much the other day, did you manage to avoid a relapse?

@Andslee, your post is very informative. Thanks. Also it rings so many bells for me! I haven't contacted the doctor yet - people are taking three hours to get through on the phone and I can't be bothered. I've had the 'breathing in dust' thing since the beginning of April (actually it felt much worse at first, like feathers). Feel it's gradually getting better. Felt almost back to normal last week and did two long walks and an exercise session. Huh! Now feel very, very tired. So, to answer your query, yes, I think you - we- will get better, but it might take another three months. Or three years. Who knows?

@AndsLee I had a camera down my oesophagus and stomach when I first had the really bad chest pain (it had been on and off since March but got dramatically worse in June after a now regretted long run).

It was all clear which rally took me by surprise. At that time I didn't consider myself to have post covid issues and thought they would see a hernia or thrush or something rather than nothing! Didn't even spot any signs of damage from silent reflux.

That being said, I do still think I have gastric issues alongside inflammation in chest area as I am very belchy (sorry if TMI!) I don't drink alcohol or caffeine anymore, have a healthy diet and whilst the pain isn't as bad as June, it's probably like it was in March/April (ie on and off).

I do have a follow up appointment with the gastro consultant in December. Will be interesting to see if they seen many long covid people by then.

Hi everyone, 6 months today here,

Still breathless, Tinnitus 24/7, Fatigue.

But still going

cried again last night about the Tinnitus

I hope everyone is getting there.

I think Im still in shock at it all

Ernieshere. Sorry that sounds rubbish. Have you seen any improvement at all?

Hi everyone - just been catching up with all your posts, lots of similarities here with those making slow, halting improvements.

The good news from me is that for a couple of weeks, I seemed to be getting better. The feature of this for me that stands out is waking up in the morning and NOT feeling like I've been hit by a car anymore. I actually felt like I had energy and had slept, which I hadn't had for months so that felt like huge progress. Less brain fog too.

Now though, I've got swollen glands, horrible sore throat, and fatigue. I think this may be a bug I've caught though rather than a relapse though... it feels a bit like tonsillitis with no fever

My gastro symptoms and diaorreah finished when I came off the ABs I was prescribed a month ago, and have not yet returned (touch wood!) I wonder if this is why I know feel more with it mentally, and in the mornings?

I saw the ENT consultant last week who put a camera down my throat and reported it was all clear. He said many of my symptoms (even glands/throat/headaches) could have been due to a post-viral collitis (I told him about the diaorreah going on for so long) and was surprised the GP hadn't tested for this. I then did have a stool and blood test for this, which was negative, but by then the GI symptoms had disappeared anyway.

Wanted to flag post-viral collitis to you guys though - in case your own GP haven't tested yet and you still have GI!

ENT consultant also suggested trying omenaprazole just to see if it helped.... which I'm now doing again.

I also had an ultrasound of my throat - to check the thyroid. It was all-clear, but the consultant did find raised lymph nodes, so there is obviously still something going on...

I'm still on a waiting list to speak to a Rheumatologist about my positive ANA result and find out what that means. I'll let you know when I do... might be some time though.

I still have nerve pain in hands/arms/shoulders, and have an appointment to see a neurologist (In November!!) I'm kind of hoping I'll be better by then though...

So last remaining symptoms are:

• Occasional headaches

-Tiredness but MUCH less than previously, and waking up feeling better than have done in months

• Sore throat and swollen glands

Any exercise beyond yoga, and I feel utterly exhausted. So I'm going to look at very very gradually reintroducing this.

Hope this helps some - and I'm so sorry we're all still on here - though looking back over the posts I've missed, it DOES seem like there is super slow improvement happening xxxx

@Ernieshere I must have posted too soon
I'm sorry things are so rubbish. I also get tinnitus due a repaired eardrum, and it's absolutely hellish when it's happening. Wishing you some relief from it soon xx

@Whatapickle78 sorry to hear you e relapsed. Could you have been unintentionally overdoing it do you think? I think, if you feel better, it's easy to do more than your body is capable of coping with. It happened to me back in July.

@Ernieshere gosh you poor thing. I'm suffering from tinnitus and it's preventing me from sleeping and working but it's not 24/7. I can't begin to imagine what that must be like! I'm taking turmeric now after @TiddleTaddleTat reported some relief after taking this. Have you tried this? Is it due to ongoing inflammation or does it feel more neurological? 💐

Hi everyone, just catching up on all the posts. We're all like little old ladies aren't we? Sending love to all of you still suffering.

@TiddleTaddleTat thank you for asking. Monday was my my high exertion day, I rested a lot yesterday but felt okay and today I am flattened! I guess it caught up with me today, though my poor sleep last night probably played a part as well.

@AndsLee I hear you about feeling insecure in your own body, and I am working on this lots. I think I have to be more positive about my body's ability to heal and recover. I keep telling myself how strong it is - despite everything this virus has thrown at me my lungs keep steadily pumping and my heart keeps beating. It wants to heal, it is healing, and I have to have confidence that it will continue to. Baby steps.

@MillStone sounds like you're still in the thick of it 💐, I hope the herbs help.

@Whatapickle78
Cheers for that! Interesting stuff! I wondered about collitis a while back, but if I had I think it's gone now. Certainly didn't show up on the ultrasound, but I suppose it wouldn't.

I do think we are indeed making progress. I have to say, when I could finally tolerate the Omeprazole again, it was a god send. It's definitely helped me.

@MirandaGoshawk Hello! Yes, do crack on with the Omeprazole. I took it at the very beginning of my illness, and my body completely threw a benny over it! So, instead I took ranitidene. I tried Omeprazole mid June, and what do you know? No bother with it then. It's definitely helped...aside from a spell of thrush. I actually saw a consultant about the "breathing through dust" sensation, who diagnosed me with "inducable laryngeal obstruction", caused by silent acid reflux, and due to this the development of a breathing pattern disorder. Take a look at the NHS resources online about each of these conditions, it definitely fits the bill. Let me know what you think? Right now, I am cracking on with the Omeprazole, and awaiting my second appointment.

Sorry all, I have definately improved, I can do most things, most days, without having to have a day or 2 indoors to recover.

I am waiting to see Audiology for my ears/Tinnitus.

I might be repeating myself, but I feel my right side has been affected more.

Eyes - Spots/lumps on right eyelid - immune response.
Disturbed vision in right eye - Optician had to rule out the need for a referral for query clot on the brain, she said my periphal vision was intact.

Nose - right nostril bleeds.

Ears - Tinnitus volume increases 10 fold, if I close right tragus (If thats the right word)
Tinnitus tone increases if I tilt my head to the right.

I stumbled to the right & fell on DC when out, she was sitting and it was funny afterwards

Right arm was weak but felt heavy.

Still wheezing, chest cramps, nausea, acid reflux etc.

Its still beyond belief that we got this & got it so bad.

I want to say, Im so glad we have been here for eachother, its meant a hell of a lot to me.

Lets hope we are on a shorthaul flight now & the longhaul is over!

@Ernieshere I had a weird fluttering eye lid going on for a while, but it's stopped now. I definitely felt like my eyesight had deteriorated during the illness. I think it's improved though. I haven't had tinnitus bad, but I do get it sometimes - I always did though - very mild. I get a weird crunching happening in my left ear, but again this is subsiding.

For a while I was definitely favouring my right side to my left. I was even dragging my left leg, but this has also stopped. It was on the left side I had the eye flutter and and the ear thing happening too.

But, like you say, I think we are actually on the short haul now. I predict this...

Short haul flight >> long train journey >> then a local bus trip >> then a wee walk to the hotel >> then the destination. ETA: 3 month. ;)