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.

Good news about your appt and treatment suggestions @fedupofbed. Sorry, I haven't caught up much as very tired from the return to work and school routine. I had a tight chest last week but it's eased off this week. Hate the boom and bust cycle!

@andslee very sorry to hear you had a neg test
@BeautifulPark thank you will have a read about fibromyalgia, could be something there too.
@LetsBeSensible hello again and sorry you are still feeling rough
Sorry to hear lots of you having trouble with sleep - things I've find helpful are Calm and Headspace sleep stories, Kalms tablets (I take 2 if the daytime ones after evening meal), magnesium, lavender oil on pillow, and a small bowl of cherries in the evening too! In case any of those help anyone. I do sometimes still get woken up by having numb hands/arms though.

Ach bugger it. Onwards and upwards, right? So...who has low ferratin?

Guess where low ferratin is found? Those with...drumroll...yes you guessed it...Fibromyalgia!

@AndsLee I’ve got Fibromyalgia. It hasn’t been an issue during this Imhave to say it’s been ver6 well behaved.

@Norugratsatall I completely agree re the insomnia and anxiety being physiological, and think it all stems from our parasympathetic and sympathetic nervous systems being completely thrown out of joint. We just need to calm everything down as much as possible - easier said than done though.

I'm also reading more and more about the neuroplasticity of our brains and the importance of being positive - again, easier said than done, especially during a relapse. I was recommended this little hypnosis meditation/ healing script which I find very comforting and constructive when I'm low:

www.questinstitute.co.uk/products-downloads/downloads/ (the one called Your Healing)

Yes phernagan is apparently still available at the chemist but you have to say it's for allergies when you buy it!

@TiddleTaddleTat I'm glad your mental clarity is improving... as ever, baby steps.

@Ernieshere I'm glad you're feeling positive despite your latest setback. 💪 Yes we can do this.

@AndsLee sorry about your antibody test... you are in good company though. I think most of us tested on here have come back negative too.

I'm still here too I posted way back and sad to say I'm still struggling nearly 7 months on. The fatigue comes and goes although the word fatigue barely covers it. I'm on my 3rd set of antibiotics this time for a throat infection. The thing I've found most helpful is breathing exercises. Proper deep belly breaths slow in hold for 5 slow out. I've stopped the steroid inhalers as I found the breathing exercises for 5 minutes every morning more effective

I have been referred back to Infectious Diseases, even though the letter I have from the consultant states that they are "reassured" about my negative antibody test, and therefore don't think I have Post Covid symptoms. What a bloody farce...

I am going to speak to my GP today about the low Iron count (which is weird since I have been taking supplements). It's clear that there is an issue with my digestive system. There has ALWAYS been an issue since March...my symptoms have ALWAYS been Gastric related. So...why in the hell have I been referred to a Respiratory Specialist and to the bloody Mental Hospital? Surely the common logic here should have been, and always should have been, to refer me to the gastric department? No? Is that to bloody sensible??

*too

@AndsLee I think you need to get your mental nurse advocate on the case...! Another wee word in your Gp’s ear....
My voice is gone again and I quite ill with a low grade temp, spec I’ll treat for my 6 month coronaversary!
I was trying to find a health app that would allow me to kind of “tick off” my daily symptoms (from a list I could create) can’t find anything so might have to make an excel sheet. I really want better data for when I see consultants etc and for myself and for the DWP.
Had a call today from their support service local to me, they tried to cancel me because “it’s all by phone so if you can’t talk we can’t support you” I’m not getting a sanction because I was unable to access their service! Also was mentioned they might have support for shopping which I could use....is voice loss really so unusual? In this age of email, FaceTime etc? Lost Voice Guy winning Britain’s Got Talent!!!

@LetsBeSensible
I'm sorry you've had such a turn for the worse... How long have you been without your voice? xx

Regroup with my GP - sensible conversation. Really, whether or not I had Covid at this stage is academic. My ongoing symptoms are the "breathing through dust" sensation and the burny skin thing. So, I'm going in to see him tomorrow so he can look at my skin. I also have this weird lump on my collarbone, he's going to take a wee look at that too. So, I'll discuss the referral situation with him then.

He was talking about the low levels of ferratin, and asked if my periods have been heavy - which they have. So this could explain the low Iron count, even with supplements.

And bless him, he said he's going to amend my notes about the negative test - that this doesn't "prove" that my symptoms are not post Covid. He's done well by me today...

Let's see what happens next...

@AndsLee the little GP is learning!
My voice is coming and going all of the time, I’d say it’s missing about 50% of the time. Throat is killing as well.
It’s the classic “fake illness” you get with chronic fatigue. You’d think you caught something but actually it’s an immune reaction to something or other, wearing blue on a Friday or forgetting to throw salt over my shoulder or some other transgression I’ve made I didn’t know at the time.

@LetsBeSensible How right you are about 'fake illness'
I've often thought they were pseudo-symptoms. Clearing up when
they had a mind too. Mine are coming and going at quick pace.
It's like that dance when music stops and everyone changes partners!

Take care everybody.

So this is interesting.

I had a surprise call from the COVID recovery clinic today. They want me to go for a COVID antibody test and a cortisol (or cortisone?) test.

So far, all the test results that have come back have been "unremarkable" (but still waiting for lung consultant to sign off the lung xray ). So the deal now is that, if I have COVID antibodies, my ongoing symptoms will be put down to coronavirus. If not, they will do further tests to eliminate other possibilities.

My remaining symptoms are pins and needles in hands, internal tremors and intermittent burning in my nose, mouth and lungs.

I guess the cortisol test is to see whether these can be put down to anxiety.

I almost 6 months out the other side..... ( highly reactive asthma)

I got illl Monday 16 March , was admitted into hospital Thursday the 19 March till the 26th!

I released with a fever of 38.8 and full active infection! I then had to fully isolate at home till I didn't have a raised temperature/ fever for 3 days consecutively!

This didn't happen till 27 April!

I'm still quite tired / get drained easily

have nerve damage in my right foot/ calf so it's always tingly and numb feeling which make walking etc awkward!

I am finding I still get breathless easier also.

I have been finding a few mornings a week I have almost mucus in my throat!

I had a follow up chest X-ray after having to chase up my own follow up appointments as they were not sorted upon hospital discharge on the 8th July! They said they was no sign and f active infection but there was some scarring!

Hi all,
Glad to see lots making small improvements, most of us still on and off with these crazy symptoms.
After last Tuesday when I had my very dizzy episode and nausea, I had 7 ‘Better’ days, still with the tight chest, breathing through dust feeling also.
Today (approaching ovulation time) back with the diarreah all day long and v pale lips 🤷🏻‍♀️

I don’t understand how, having not had a cough, the chest tightness and breathing through dust still persists. The x-rays show nothing, but to even sing or talk too much causes soreness 🤷🏻‍♀️

Hi all,

Joining this thread (reluctantly )

I had suspected COVID at the end of Feb/start of March, I say suspected because I wasn’t tested and haven’t had an antibody test.

Started with gastro problems which moved onto temperature, aches, fatigue, no taste or smell, burning chest, difficulty breathing and a very mild cough that lasted for two weeks.

The burning chest, difficult breathing and fatigue continued until April.

May and June were ok then the burning chest and fatigue came back in August and haven’t really gone. I’m so tired I have to nap between finishing work and eating otherwise I’m asleep almost as soon as I’ve eaten - and I stay asleep until the next morning.

I have the most horrendous brain fog and generally feel like crap, things still don’t taste or smell right - it’s not so much that I can’t taste or smell things as that they’ve changed - perfumes are weird, bacon tastes like mould, the only thing that tastes like it should is curry.

Today has been horrendous, the air quality where I live seems to be really low today, I couldn’t walk more than 200 yards without being so out of breath I felt sick.

I’ve got a blood test on Monday - full bloods including b12 and a test to measure inflammation. The GP hasn’t mentioned antibody tests though - did anyone have to force the issue with their GP or did they suggest it?

My GP did tell me off for not getting tested in March but backed down pretty quickly when I pointed out gastro issues weren’t a symptom end of Feb/March so I wouldn’t have been tested anyway!

I’m really bloody fed up of having to plan what I can do when so I don’t run out of energy. I just want to feel well again.

@BeautifulPark I’m not a hypochondriac but my bloody immune system is!
@PearlHeart @BanjoStarz congratulations on joining our club, and commiserations that you qualify

Feeling a bit fed up today with having to chase the post-covid clinic referral. Took about 5 phone calls, finally have them calling me last week.

I've been trying to find a cardiologist who I can see soon, private I guess. I am fitting the profile of POTS and if appropriate receive a diagnosis, as I'm keen to try a management plan for that. I'm a bit wary of increasing salt so much when I can't rule out heart damage. It's my heart that seems to give me the most trouble.

Interestingly PoTS Uk list gluten sensitivity being very common among sufferers, as a coeliac I find this interesting . Aren't you too @fedupofbed ?

Anyway I'm still doing my resting and taking the supplements etc, plodding on. I have a naturopath consultation tomorrow which might give some insights, so I'll feed back anything helpful.

I'm feeling down about not being able to leave the house much. When I tried out walking for 2-3 mins to the end of the road I relapsed for a couple of days. Then tried again and the same happened. Because I've returned to work remotely I can't mess about with creating relapses now, I need a stable baseline as much as possible.

So I've taken the plunge and decided to get a wheelchair. Being housebound is so depressing and I'm dreading it as we get into winter. I think it'll just be one to be pushed, for occasional use. Or I could rent a mobility scooter. It feels.... huge. But what it means is greater freedom and ability to do things that I want to do.

@Confusedasusual78 I am six months post illness and also still get sore chest singing or talking too much. Also if I exert too much. I walk alot but if I over exert my chest burns. I work in a pupil referral unit and had to restrain a pupil for their own safety last week and it was very hard. It left me very breathless with burning chest and Sob that evening.

@Porcupineinwaiting the cortisone thing is interesting, please ask questions about it and report back?
@TiddleTaddleTat sensible move, getting out will be good for your soul. I would love a motorized scooter thing for going the shops and back. Shame there’s steps up to the front door of our block of flats, and no I’m not ground floor!

Morning, and sorry to all of you who are still going through so much after all this time.

@TiddleTaddleTat yes I'm coeliac too. I think what I call my POTS-like symptoms have subsided now - my heart rate no longer shoots up when I sit or stand and I have less dizzy/lightheaded spells. I still get the occasional mad spike when I'm doing absolutely nothing (I was told I had post viral arrhythmia) but less frequently. I still can't do much activity without it going really high but I'm putting this down to deconditioning and hoping it will improve as I'm able to do more. I followed all the POTS recommendations but who knows how much helped and how much is down to time. My gut reaction is that the gentle exercises I did lying down in bed helped.

I hope your naturopath appointment goes well. Let us know how it goes. I've found that just the act of having someone actually listen and validate everything you've been through is helpful in itself. So many of us haven't had that.

@fedupofbed thanks, I agree. I think it will be helpful just to have someone listen as I do feel like I've just been shut out and nothing has really been investigated.
My PoTS symptoms are lessened but I'd say I still notice my bpm is so much higher when standing than when walking or lying down. I don't get dizzy or lightheaded anymore either, which is positive. I guess as we learn more about covid being a vascular disease it might be that PoTS isn't quite what this is, but some other manifestation to do with blood flow to/from the heart.
Btw, I tried the phernargan last night as I had another occasion of waking with an irregular heart beat banging loudly in my chest. It didn't work initially, so I took a second 25mg pill. Bloody hell when I woke up I realised I'd taken it at 5am so now I am still super drowsy!! It does work!!

Just a quick update following my call with the naturopath. It was good, she took lots of information (from forms I completed beforehand) and also asked lots of questions. It's a holistic approach - lifestyle, emotional factors, diet etc. She suggested a few things and said supplements needed tweaking re dosage and quality but generally they are on the right track as is diet.
One thing she did say was that 5000iu of vitamin D should be the minimum and that it is important to continue taking vitamin C.
Going to create a plan around building strength in the gut, to develop immune system better. Also balance out blood sugar levels as these are likely contributing to spikes of cortisol and heart rate increases during the day - definitely noticed this links to being hungry.
Found it useful - very bespoke so hard to generalise the advice but i would recommend it.