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.

@TiddleTaddleTat impending sense of doom is exactly how I would describe it. Sorry I didn’t put this in my previous message.

Like others for me this is getting less frequent but when it happens it’s awful

@whatapickle78 @givemeanother
Och, no bother at all.
I think postcode has played a part to my advantage this time, although initially not so much. We've been lucky with infection rates (although that may change now, which is a worry for the most remote rural communities that are already fragile enough...but I digress). Anyway, the hospital hasn't been overwhelmed, so there is capacity, and I think my GP "took a telling" from the psychiatric nurse, conceded he was stumped, and passed me over to this utterly brilliant consultant. I feel very lucky indeed.

I think the trick is, pick your most serious symptom, say it's respiratory, and report on that to your GP. Keep pressing this. It seemed my consistency in reporting my gastric issues helped, because eventually my GP had to admit there was a problem. Once you're face to face, then start to add to the picture...

@AndsLee that's fantastic you finally got all this support. I remember that your GP was particularly rubbish!

Unfortunately there seems to be nothing post covid here at all. I'm finally having another chest X-ray on Monday and a video consultation afterwards. My breathing took a real turn for the worse a couple of days ago and I'm just so worried now. All my calm vibes and attempts at mindfulness and positivity have completely left me. After 5 and a half months a downturn in breathing can't be a good thing. I'm just so exhausted by it all.

Sorry everyone, I know it does no good to whinge, and it brings everyone else down. Just need to get it off my chest (ha physically as well as metaphorically).

@fedupofbed
I'm really sorry to hear about a deterioration in your breathing, that must be very scary. Glad you will be having the chest X-ray on Monday, really hope that it gives some answers and a plan going forward X

@TiddleTaddleTat @Whatnext2018 it might be sensory overload. I actually found out it was a “thing” on Mumsnet when some people were talking on a thread...
Sensory overload would make sense. It can happen after traumatic events, plus we are likely to have some heightened sensitivity to light and sound. Plus we’re weak and it’s physically demanding.

impending sense of doom is exactly how I would describe it. Sorry I didn’t put this in my previous message.

I get this quite a bit, for years pre-Covid due to endometriosis, and it's almost always due to iron deficiency and a day or two of liquid iron supplements sorts it out. (It can also happen with B12/D3 deficiency.) With all the post-viral crap we're dealing with, especially as most of us feel our periods are weird atm, it's very possible that something like this is going on with you guys too.

@alittleprivacy thanks for that, it could be iron deficiency. My bloods have always come back ok for anaemia but this did happen for me towards the end of a particularly long period (unusual for me).
Unlikely to be Vitamin D or B12 related as I'm taking supplements for both - 25ug D3 and a high potency B complex.

Thanks @alittleprivacy I have wondered about b12 or iron deficiency during this, I haven’t had a blood test for either. I also have slight endometriosis, how interesting.
I might start taking a vitamin B supplement (along with everything else! 🙈)

@andslee glad to see you back and gold star to that psychiatrist! That’s really made me chuckle. Of all the quackery going round about post-covid being “anxiety” and for me, bitter experience in the past of similar with ME/CFS, I just LOVE the thought of the mental health professionals being the ones fighting back!! On our behalf!!

I’m imagining some kind of psych professionals forum where they’re all moaning about GP’s “had another referral today who can’t breathe and a heart that races, course they sent it over to US and not bloody cardiology or respiratory, CBT can’t cure lung damage FFS”

@LetsBeSensible that made me laugh out loud!! They will give out CBT for anything.

@alittleprivacy thanks worth thinking about re supplements. I’ve had low calcium twice on blood tests and at one point critically low, so I do think that imbalances in the way we are processing things can’t help.

@LetsBeSendible
The psychiatric nurse practitioner is a wee fire cracker too. I have a mental pic of a wee Jack Russell tearing at the GP's trouserleg. My GP is young, the nurse practitioner a middle aged, worldly wise woman. I imagine she took the "now you look here, young man!" I guess better to nip it in the bud now in case it does become the status quo... Aye, she was a bit "well, I canna really help you, and you'll not be needing that Prozac he described either..." The irony is, it was in the mental health ward I had bloods drawn for thyroid and Diabetes tests because that was at least one thing this nurse could do! Strange times we live in...

@Criticallythinking Exactly! I’m really not sure it’s just anxiety..I’ve been anxious before, this doesn’t have that build up to it etc..it ‘Feels’ physical, if that makes sense

So I've taken myself to A&E today to have my shortness of breath looked at. For the last week it's been constant and wasn't one of the original symptoms I had in March (far more gastro then).

My GP has been useless, but the A&E doctor is lovely. I've had my chest examined (clear), abdomen prodded (tenderness over gallbladder/liver). Now waiting for ECG, ultrasound and a walk around with a pulse oximeter. He's also looking at a chest X-ray I had taken earlier this week.

Just great to be listened to, but ridiculous I've had to come to a&e for it. I didn't mention long haul covid, but he did...though said he'd heard about it from the media rather than seeing many people present in a&e.

Do you know, givemeanother I am pretty much at the stage where I think I should have gone to a&e when I had excruciating chest pain and I still have not ruled it out, given that it has not gone away, only lessened. It seems the only way to get any tests. I hope it brings some answers and reassurance.

@givemeanother
Be interesting to see if they come to a similar conclusion. The consultant yesterday said that the laryngeal obstruction can mimic asthma. And...the spasms leave you gasping for breathe. See, I am tender around that area too. Shall we compare notes afterwards?

@AndsLee bloods and ecg all normal and so they decided not to do the walk around oximeter. They are referring me to the chest clinic instead which hopefully will be soon and will be similar to what you got from the consultant you saw.

However, my chest xray has shown moderate scaliotis (curvature of spine). The A&E doc didn't know much about this and whether that could cause breathing problems but a possibility that home working/bad posture has exacerbated something and caused digestive and breathing issues?

I'm not sure what I'd rather - long haul covid or a spinal issue!

@givemeanother moderate scoliosis shouldn't cause breathing difficulties. DD has it and is super sporty and athletic. But maybe it depends on how the curve lies. Moderate is classed as anything over a 40 degree curve. And if it was the GP you saw then yes, our experience is they know little about scoliosis! Good luck on your journey

Sorry - you said you saw A and E doc. Probably the same tho in terms of knowledge!

@Whatapickle78 I had a very similar reaction to a live flu jab in 2003ish, very neurological pins and needles, creeping scalp, unable to walk etc. MRI's /neurologist every year for a good few years.

Basically it damaged the nerves myelin sheath, it did repair completely eventually but took years and always flared up if I had another virus or got run down. I'm a little neurological post covid, pins and needles, numb face etc but personally I'm 100% confident for me it will eventually resolve.

Hopefully that's a little reassuring.

Hi long-haulers

Do any of you have experience of tachycardia?

I had covid back in March and was generally improving after lots of persistent symptoms but stupidly went for a gentle run and ended up at the GP with chest pain and dizziness, where I had a resting heart of 130.

I got an immediate referral to hospital for tests (bloods, ECG, chest x-ray). ECG and X-ray fine. Bloods showed I was a bit anaemic.

Since then I have been checking my heart rate regularly - it’s sometimes normal (65-75) at rest but more usually 85-90 and jumps to 120-130 with any exertion (climbing stairs etc).

Hospital weren’t especially helpful with advice - they did acknowledge likelihood symptoms were Covid-related but didn’t really have any suggestions for what next other than to take it easy.

@Bubbinsmakesthree I had tachycardia at about 2 months in for about a month then with very little exertion it rectified itself. I think it can be post viral.

Everytime I have improved I have ruined it with trying to exercise. This time bar walking and very gentle stretches I am going to wait until I have been 100% better for quite a while. It goes against the grain as I am usually a exercise freak but I am convinced I would be have been better by now had I stopped trying to exercise.

Hi @Bubbinsmakesthree I’m exactly the same. Have been following the a£vice on pacing, until the other week when I went mad going shopping and visiting and caused a relapse.

Hi @Bubbinsmakesthree I have the tachycardia. I haven’t done any exercise yet as I’m not there yet, but I get it just doing things like tidying up. It’s very disconcerting. My husband is medical and thinks it’s sinus tachycardia which apparently isn’t problematic, but GP has said I can have an ECG if I want. I haven’t yet as I’m unwell with a stomach bug and want that out of the way!

Interestingly I had it during my Covid and bit after and then it went for about 2 months and came back again.

Thanks all, reassuring to know I’m not on my own!

I’ve got no idea whether I’ve had the tachycardia previously as I’ve never checked my heart rate. When my pulse is up to 130 I don’t really feel hugely different than when it’s at 70 (though since I over did it with the running I’ve been feeling pretty rubbish in general).

@Criticallythinking - from what you know would an ECG have shown up a problem if there was one?

I’m kicking myself for pushing it as I’d a good couple of weeks of feeling almost normal and now spent the better part of three days flopped on the sofa exhausted, all for the sake of 15 mins light running!