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.

@stayathomegardener
Thanks so much for posting this, and I’m sorry your nerve pain has flared up too post-Covid. It’s depressing isn’t it when you feel you’ve made so much progress over years.

But what you say is really reassuring. I’ve heard that about myelin sheath damage from others on the FB group. It’s good to hear it can repair, though may take a while.

Do you know out of interest if myelin sheath damage shows up on mris? Is this how yours was diagnosed? I had no idea that nerve damage could be caused by a virus before I heard of Covid! It could explain some of my own flare ups...

I hope yours recovers and repairs speedily.

@fedupofbed
I’m so sorry to hear about your breathing. It must feel quite worrying. I hope there is an explanation soon as to why this is happening.

@Bubbinsmakesthree I thought that an ECG might show it up but only if it were happening there and then and because it is so intermittent chances are it wouldn’t be when I went. I’ll see how it goes.

Wondering if anyone who had gastric symptoms can advise. I’ve had diarrhoea now for a week and unlike with normal bugs which go on for a few days or so it happens from the middle of the night until the mid morning then stops. Won’t provide too much detail but it was seeming like a bug due to its nature... but a week on and I’m still going.
It may well be a nasty bug and I’m run down. But I am very afraid this is going the way of our post Covid symptoms and just not resolving in a normal fashion. I had diarrhoea with my Covid but that settled much more easily than this and has not been one of my post Covid symptoms.
GP is doing a stool test and has said not to call back until it has been two weeks.
Am I panicking over nothing yet?? Because I am panicking big time!

@Criticallythinking I went for an ECG but of course everything looked pretty normal while I was there, just a rather fast heart rate due to walking to the dept, getting into position etc. A 24 ECG would have been much better but was not offered.

The diarrhoea sounds dreadful. It could certainly be connected to covid - this was my first symptom back in mid March, but it stopped. Are you drinking Diarolyte or similar? That would be my biggest concern. You may have picked up a bug of course, or eaten something funny?

Do you notice it is better or worse with certain foods at all? And consistent throughout the day?

Trying something for gut health might be worthwhile as you wait until the GP will pay attention. Fermented foods like kimchi, Kefir, probiotics? My latest addition is some bio-kult capsules. Gut health and immunity are closely linked.

Thanks @TiddleTaddleTat I assume it’s a bug as my DS has been going to the childminder so has been mixing with other kids, but he only had a borderline stomach issue, and my DH claims he has had an off stomach, but it seems to have hit me so very hard. I’m waking at 3.30am to go, and it tends to tail off mid morning. I’ve been eating plain food for days. Went to bed at 8 last night in case I woke up needing to go (which I did).

GP said diarrhoea could be 7-14 days, but I’ve never had it this long before and trust in my body is so low at the moment, as I am sure you appreciate the post Covid stuff makes your body a bit of a stranger.

@Criticallythinking I wonder if it's being triggered by an empty stomach when it starts in the night? Clears up once you've started eating ? Perhaps eating a plain snack later in the night could help with the waking to go to the toilet. You have my sympathies - being woken up to go is really not nice. You've hit the nail on the head with feeling like our bodies aren't our own ... horrid

@Criticallythinking Have you started any new meds or changed food? Milk?

@TiddleTaddleTat yeah I wondered if it was because all my food is digested at that point and my stomach is empty- instead of going first thing it’s happening in the night.

@Ernieshere no nothing new. I am on several meds but nothing has changed. Since being on sertraline (about 8 weeks) my bowels have been a bit up and down but nothing like this, though maybe the sertraline isn’t helping.

I guess I’ll wait and see how it is this week and hope for the best. Controlling my mood is the challenge!

@givemeanother How did the ultrasound go?

@AndsLee ultrasound didn't happen. Once the ECG and bloods were so 'reassuringly' normal they said nothing else would change the outcome of what action a&e took.

Instead they're referring me to chest clinic (urgent referral I hope) and asked me to follow up on the ultrasound with my GP. I probably won't as I had an abdominal ultrasound as part of some gastro investigations I had in early July (including endoscopy) and they were all clear.

I'm hoping for a chest CT scan and might see if I can persuade them to expand that to abdominal area too.

How are you doing today?

Very tired today after a busy few days of travelling to see dh friends although I rested mostly. Shortness of breath has greatly improved and therefore so has my mobility but I still can't take a very deep breath or move fast. Upper back pain is still there and 'flares' up every day at different points. Going to have a quiet few days now.

Sorry folks, only had a couple of instances of the terribles, so can't offer any advise. My gastric symptoms were/are more stomach than bowel. Except keep hydrated for goodness sake!

@givemeanother
I'm good ta. Having an easy day of it. Been reading a little around laryngeal obstruction and trying the "5 second breath hold" much of the literature suggests for spasms. I am not sure, but I think it is helping. I believe the consultant is correct... Acid Reflux.

24 hour ECG tomorrow, but my gut is it will be fine. Still, I am a bit nervous.

I woke up sweating last night, but it is warm, there was no temp, and Auntie Flo is in the house, so I am not worried.

I'll be interested to get the auto immune tests completed. My instinct is there is a slight issue there. Plus, my mother had Lupus...so...

I'm nervous to go back on omeprazole. I have a horrible coating on my tongue, possibly thrush, that feels like it's in my throat too. Whilst that could potentially be caused my acid reflux...it also could be that the omeprazole destroyed any gut balance I had and gave me thrush overgrowth. It's so hard to know!

I saw a dentist about my tongue coating this week and she's referred me to a dental specialist to look at it as it's quite severe. Am hoping they will take a scraping and confirm what it is.

No GP has been willing to look in my mouth (or anywhere else)...

@AndsLee and so I will be really interested to hear if the omeprazole does improve things for you.

@givemeanother Corsydol mouthwash helps with my tongue coating. I'm actually going to see my doctor about it in the morning as it's just not clearing up. The fluconazole seemed to help a lot at first but it's come back. So I'm getting it checked out to see what else it could be. My tongue is swollen and scalloped, so that's presumably related. I really assume it's thrush though as I ate some marshmallows yesterday after avoiding sugar for weeks and it got worse not too long afterwards.

@givemeanother

I also wondered if I had thrush, but the consultant could tell straight away... no. It could have been that it cleared up with the suspension I had last week? But I doubt it... I took Omeprazole yesterday and this morn again. I think I feel the benefit of it, but I guess it's ENT I am needing now. I'd be interested to hear what your dentist says?

@alittleprivacy cordosyl didn't help mine. I'm half way through a 50mg course of fluconazole which has cleared some of it...but it's been pretty entrenched and I had a two week course of antibiotics that finished last week which made it even worse. I also find sugar worsens it...and I've been off the booze for 2 months to try help

Interestingly the gastro consultant I saw for my endoscopy said they were seeing a lot of thrush in covid patients, as did a speech therapist I know who works with covid patients after ventilation.

My 7-yr old (who was the only one in our house with typical covid symptoms as they were known in March) also developed thrush and once hers cleared up the cyclical cough/fatigue she was getting has gone.

@alittleprivacy and what your GP says...?

@AndsLee will let you know what dentist says. Keep me posted on your omeprazole and ENT progress. Not sure I'd have any success persuading my GP for an ENT referral now, they are fed up of me!

@alittleprivacy I also find diluted apple cider vinegar (I put a slosh in a cup of herbal tea ) helps with the thrushy feeling in throat.

@givemeanother
GPs forget we are the service users! No us, no practices! Absolutely furious with my surgery, even though there has been a marked improvement in the quality of service since the mental health pros got involved (they were fantastic).

I've decided that if my ANA results come back positive, I am going to have a conversation with my GP to find out if they have experience with auto immune issues, and if not I'll move surgery. I'm not having this dismissive behaviour again!

Sorry. Rant over...

@Criticallythinking
You haven’t started taking magnesium in the evening by any chance have you? This can cause diaorreah and most people seem to take it in the PM.... just a thought.

@andslee I got the advice to “shop around” for a GP with interest/experience from some CFS/ME info. I was lucky as there is choice near enough to me. I found “my” GP years ago. I’d forgotten until recently when someone asked why I wasn’t using the GP 20 meters from my house...would rather walk ten mins up the road for a good dr than pop next door and, I shit you not, get actually laughed at by some locum

Good evening
I thought I would just check in. Sorry to hear some of you are still not feeling any better. Since I last posted I have had a reasonable amount of good days and have managed to be back to normal just that I get tired quickly, However this week dipped a bit and had stomach problems again with cramps, bloating and diarrhoea and loss of appetite. Some mild headaches and feeling tired all the time. This dip although has been less and manageable. Finding this hot weather a struggle but often feel like that with my heart problem of cardiac spasms so it could be that. Husband is also on the up and the dips are becoming less and his breathing is now starting to improve quite a lot. Wishing you all improvements

Hi - checking in too. Sorry to see some people are still suffering. It was 20 weeks since I got sick yesterday. I’m still fatigued in between doing things but otherwise OK. I thought I’d caused a relapse last week (I had pushed my heart-rate up to 150 accidentally) but luckily it only lasted a day and was followed by a really good day. I’m now jogging again (well, Couch to 5K). With that and lots of other gentle exercise I can see my body slowly changing back to its pre 3-months-on-the-sofa state. Sending everyone healing thoughts.