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.

Today's panel included checks for Iron and B12 deficiencies, the ANA test, and actually an antibody test! The nurses nearly didn't take for the ANA, but a swift phone call to the consultant soon had that in place. A stark reminder to us all to keep abreast of what's happening. Keep on top! Xx

@Andslee@Criticallythinking
@Andslee did you have antibodies test done as NHS worker or are they
generally available now?

I had sleep this pm dreamt I caused mayhem in my bank because I tried to pay £50,000 pound in 1p pieces. 'I wish!

Take care.

Thanks for mentions you lot. Zero energy today am like a quivering jellyfish. Didn’t sleep great last night, hope tonight is better.

How are you all finding it wearing a mask in shops? I know I have to wear one but I feel really faint as I find breathing hard even when not wearing it!

@BeautifulPark I got the antibody test because it was requested by my consultant. :)

@KatySun my main issue with chest pain and shortness of breath is now with long sustained talking too. I am walking well and been active but if I meet someone and talk I get pain and sob. Its weird.

Hi all,
Sneezing all over the place and sinus type pain and aches..had the sinus type things badly a couple of months ago.
Lots of talk about a low histamine diet, is anyone doing this? Links to hormones apparently and ovulation and period time. Green tea is apparently a trigger..which I’ve been drinking by the bucket load as I read it’s good for inflammation?! Can’t win.

I also get a sore chest and a shaky feeling if I raise my voice or talk for too long.
It happens if I sing along to the radio in the car too..I might be feeling a bit happier and more positive, so sing quite enthusiastically and the chest feeling comes along to remind me I can’t do that.

Another one baffled by the SOB. There's no consistency to it. My breathing seems to be at it's best when I'm moving. SOB seems to happen more when I'm watching TV, being a passenger in a car or talking -- as if if the mental stimulus causes it.

Having now been diagnosed with Dysfunctional Breathing after a couple of tests, I think 'they' are going to attribute the SOB as a the result of DB. I think it's the other way around and the immune / nervous system is causing the sensation of SOB which then results in physical DB.

Like to add...

I think I have 2 types of SOB.

One is a low level sensation of breathing through cotton wool. Probably from reflux. PPI medication relieves this.

The other is the awful SOB which came on with the original infection. That’s the straight jacket around the upper body that leaves you gasping for air.

What comes on now is more akin to the severe. The stop what you’re doing and dig deep to get air in sensation.

@Millstone I can start my walk feeling a tight chest and slight pain and as I walk my chest seems to ease. This is why I think it could be muscular or DB like you say. It's just such a nightmare there isn't more help or advice. I never know what to do for the best. If my chest or breathing plays up I stop but if it's muscular or DB is carrying on with the exercise and the pain a good thing for recovery I just don't know 🤔

@Kitcat122 So hard isn't it! Right from the start of this we've had no idea what's going on or how to handle it.

Now the advice on offer is treatment for the closest existing conditions and not necessarily the best for this recovery(?)

It's impossible to now what to do.

know

@MillStone @Kitcat122 just to add that my sob is exactly the same. If I'm walking (and appreciate I'm lucky that I can go for a 20min walk or up and down the stairs without problems) the my breathing is completely fine. It's at rest, or on standing that I have that having to gasp for breath. I do think it's worse after a day when I've been doing more rather than resting though.

Yesterday was the first full day I've had no sob in 3 weeks. It's back today though!

Same here with the SOB. It is much more noticeably at rest. Same with the chest pressure for me.

Does anyone else get the intense heaviness in their legs when lying down? Found anything to help? Raising them doesn't seem to make a difference for me.

@MillStone @Kitcat122 @givemeanother my SOB has flared up with this latest relapse and I fully agree it isn’t linked to activity. In July I cycled round center parcs (slowly) without get any shortness of breath. This last fortnight I get it just walking round the house.

It’s definitely a bizarre high up take your breath away feeling. It has to be linked to the immune system surely. Not that that helps us!

@Criticallythinking @Kitcat122 @givemeanother How interesting we're all observing the same thing.

The advice a breathing physio gave me is that when you gasp for air, hold your breath for 5 seconds. But I can't remember the reason.

@TiddleTaddleTat lots of calf pain but no heaviness sorry.

@bonkerz - I was actually tested for B12 deficiency yesterday. Be interesting to see what comes out of this.

I'm reluctant to call what I am, and have, been experiencing SOB. For me, I think it's definitely a mechanical issue which fits with the respiratory consultant's diagnosis - "laryngeal obstruction". I wish it would improve though, the Omeprazole I think is helping, but I have been taking this for a while now and think this should be starting to resolve?

@isitorisntit - I hear what you are saying about minor blips as opposed to relapses. I would be really reluctant to use terms now like "terrible" or "horrendous" or "awful" when describing my symptoms, which I would have happily used before. I think my symptoms move in 7 week cycles, and I think I am just coming out of week 21 (so 3rd cycle) and I have experienced like..."mini" symptoms recently. I think I said before, my symptoms seem to decrease in intensity and longevity.

I still have the burning skin though. That to me is like the loss of your taste and smell. It stings so bad...

xxx

@isitorisntit
Hi my main problem is burning skin all body.
Extremely uncomfortable, I agree this syndrome moves in 7 /8 week cycles.
Have you noticed that towards the end of the cycle you feel quite well.
Does anything help with burning ?

I really hope everyone feels much better soon.
X xxx

@BeautifulPark - yup indeedy. I must admit I don't feel "unwell". I am very aware I am really lucky. I am managing to work full time, and I don't have the crippling fatigue others have experienced. But I still don't feel "right", that's for sure. And that is a difficult pill to swallow when you were as healthy as an ox before...

Does anyone have pale lips and eyes? I’ve had the changes in lips for a while, I think I’ll go to the lab tomorrow, where you can get testing done, should I be asking for an iron test and B12? Anything else? I feel so weak today.

I’m having a lot of trouble holding things. They just drop from my hand, there’s no strength there.

Is it a complete blood count blood test for anaemia? I had one in May which didn’t show it, but probably good to do it again.

@LetsBeSensible I get that a lot also, very clumsy since around May, have dropped many things.

I think I’m really seeing that the time between ovulation and period is my worst, this feels quite bad since Tuesday and period shouldn’t even be due until a week on Monday ish, then on period I’m not great. Hoping this isn’t meaning a basic 9-10 days tops of feeling better but still not 100% I might be off the mark though,
Anyone else noticing the hormonal patterns? I was feeling so much better in lots of ways. Now it’s Friday almost evening and I feel weak, dizzy and out of it-pissing me off now

Ah the point about moving is really interesting.

I am having what I am going to call a relapse - third day of chest pain after it seeming to ease for a while and today I feel flu-ish and unwell as well. Back to working on the sofa. And my step count has shrunk with it this week.

I spoke to the doctor today (not my usual GP) who was quite attentive but wanted me to call back and speak to my usual GP who knows more about me. But he also said it sounded muscular. But how?! This is what I don’t understand. So maybe I am making it worse by resting now instead of going for a walk.

I am going to rest fifteen minutes and then walk fifteen 🤷🏻‍♀️ just now and see.

He also prescribed naproxen for the pain when it gets bad.

whatsnext sorry yes I was going to say iron test for sure - it sounds like anaemia could be an issue - I have had this and it makes you feel washed out.

@Whatnext2018 pissing me off now
Haha says it all for me! Indeed. Same here.
What's this lab you can go to for vitamin testing?
My SOB and chest pain is my most prominent symptom today. Trying to rest in between household tasks. I think I need at least 2 hours of rest over several occasions during the day on top of 8 hours good unbroken sleep. Needless to say, I don't achieve that every day or even most days. When I do, I feel relatively better.

Agree ovulation to period and during period is the worst time. So basically most of the month then!! I think all systems are affected.

Hoping my referral for cardiology comes through now. I did see on FB long haul group that some are suggesting walking in to A&E when quiet to report the heart symptoms as more likely to see a specialist sooner, but I'm not sure if that's true? I also feel uncomfortable about the ethics of it. Plus just going to A&E and waiting etc is likely to wipe me out for days or weeks afterwards.