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.

@Egghead68 and @Meercatmama great to hear from you both and that despite the dips you're both doing good. Wonderful about your husband too Meercat.

@Moodgie I've been thinking about you... I hope you've now made a decision about flying. Xx

@fedupofbed That’s so lovely of you. I think I’m not gonna go. Currently a bit of a sore throat. And had the red patches on my thigh today. I think it’s best to stay put and keep recovering.

@Criticallythinking I have had bowel issues for months - mine is a morning toilet rush. Some days better than others, but I have to go pretty much soon after I wake up with some days being more runny than others. Sorry for the graphics. Some mornings I also feel nauseaous.

Hi @Moodgie so sorry to hear you are not feeling great, the sore throats are horrible.

Interesting about your bowel issues. I am on day 5 of running to the loo at 3.30am... things do seem to be improving slightly but it’s slow. I don’t know if it can be Covid related so far out but I think my post Covid status is making it take ages to settle as our bodies seem so battered and I’m still battling SOB and nerve pains at the same time. I’m sorry yours are still going. What has it done to us?!

I also had the joy of a wasp joining me at 3.30 in the bathroom. Then my cat joined me in the spare room followed by DS at 5.30. You couldn’t make it up!!

Long-tail symptoms on Radio at the moment. Discussing word-finding and visual problems.

Radio 4

I'm half way through a 50mg course of fluconazole which has cleared some of it...but it's been pretty entrenched

I was on 100mg for 7 days. The first day I saw a marked improvement. Then the thrush seemed to surge back. The last dose made a difference and the thrush died down a bit for a few days but started to come back bit by bit. And that was with me avoiding sugar, bread, etc. I just gave up yesterday and ate sweets as I've been bloody craving them, which I never normally do. I often quit processed sugar for a period for general health reasons and don't miss it all. My tongue is also swollen and scalloped. I'm very curious to see what the doctor has to say today as it will be the first time someone actually looks at it.

@alittleprivacy could it be a different tongue condition? There’s one called geographic tongue which sounds similar to what you have. I’m sure you have already considered these things though if you google as much as I do.

I have had Patterns / coating on my tongue for years (geographical tongue possibly) so I’m thinking maybe some people have just not noticed it before?

My sore throat seems to be gone but have the throaty phlegmy feeling instead that disappeared in May!

I've also got a scalloped tongue and have done as long as I can remember.

Feeling ok here today , fatigue is still being kept at bay and I just feel tired rather than shattered and beaten. Trying hard to stay within my limits despite lots of demands on my energy.

In terms of activity, I'm generally clocking up around 2000 steps a day at the moment , around the house, garden and very short trips out with minimal walking (very little driving). I've been gradually increasing this in a relatively planned way - if I look back at June when I bought the pedometer it was a very clear boom and bust pattern, some days I was walking 3000 steps then relapsed and was at 300 steps or so for a couple of days. Since late July it's not gone lower than about 1400 per day and the trajectory is generally upwards with less severe and long lasting relapses. Fortunately these don't leave me in bed all day but I spend more time sitting and lying than on my feet. Even so, I can still be reasonably active (reading, craft, etc). This is a huge step forward for me! Hoping it continues.

Am back again! Have had 3 days of SOB - not happy! And having occasional palpitations with it. Again woke last night With a huge panic attack - heart racing, palpitations. SOB, needing the toilet. Took 2 hours to calm down.
I had my first symptom end of first week of March. Have been doing well for a while so not sure what this is! Have booked to see cardiologist in 2 weeks. Hoping nothing sinister going on.

@findingschools4myboys sorry you're back here again after all this time. Do you think anything set it off? The weather maybe?

I've had a crazy day - chiropractor, chest X-ray and just come out of an online respiratory appointment. I hope I don't suffer too much tomorrow.

The X-ray nearly didn't happen as my temperature was too raised to get in - I had to sit down and drink lots of cold water and I finally scraped through. I think there's been a sea change in medical thinking and everyone is now aware that this is a thing so the consultant was really helpful. My X-ray was mainly clear (no cause for concern, hooray!). Holding off on a CT scan as I had one back in March, next step face to face meeting, breathing tests and physiotherapy. At last!

@Moodgie I'm so sorry you can't make it - I would say very wise though 💐.

@alittleprivacy what did your GP say today?

And @TiddleTaddleTat glad that you're still onwards and upwards!

@fedupofbed
Hello! Busy day for you! Glad your X-ray was ok! Are you still struggling a lot? I also want to see a respiratory specialist to just check lungs are clear.

I am not sure what has triggered it. I haven’t been sleeping well so am quite tired. But I felt like my SOB just came out of the blue. And I don’t know if heart feelings are due to anxiety or not. So difficult to know. Am almost scared to go to bed tonight, worried I will have panic attack again and worried I will wake up feeling the same.

Am back in a grump with friends.
Saw one recently as part of my overdoing it. Couldn’t meet them since due to relapse. Asked to meet up in the week and explained am not well enough. No further reply.
Another one not heard from for weeks, messaged to ask how I was. Gave an update and they asked what was the cause of all this illness? Explained I have been continuously ill since I got covid. They explained they were exactly the same due to being indoors since March and not seeing anyone due to being anxious about catching covid, and were dreading going to work the next day. No further replies.
It’s just really pissed me off. I bet they both think they’re great for asking how I’m doing, even though clearly they drop the conversation when I say I’m not well.

I had 3 days of burning chest and sob last week findingschools4myboys. In my case I think it was a mixture of overdoing it and hormones. Made me v down. Conversely, a week later, I'm feeling like my old self for the first time since March.

@Norugratsatall Yes, the Tinnitus is still 100% full on 24/7 since March

I have been really breathless since yesterday, gasping at times, wheezy and tight chest.

@Porcupineinwaiting
Glad to hear you are feeling normal! That’s amazing. Also makes me feel better knowing others have these relapse days and then are fine again.
I really hope it eases up tomorrow! Thinking about it maybe I overdid it last week. As my SOB started on Saturday. Last week I did intensive workouts for 3,5 hours per day! Wondering if that caught up with me. 🤔

Hi everyone,

An update. My problem has always been chest pain and sob. The last few weeks both have felt much better. I feel the best I have felt since March. Not 100% but almost. Going to take it very steady and hopefully it continues.

Oh @Ernieshere I'm so sorry to hear that! Mine was awful last week too, truly awful and my chest was burning, dreadful muscle aches etc.

So I decided to cut back all but essential activity (mental and physical) since last Tuesday. And just rest for the majority of the day. I hope I'm not counting my chickens but the change has been dramatic! Chest pain much easier, tinnitus 90% gone. I'm not sure of your personal circumstances obvs (I don't have young children) but is this something you could try? Oh and I drink 8 glasses of water (wish it was wine!! 😂) a day.

I feel for you I really do, it's utter torment. 💐

@Kitcat122 really pleased to hear that! Which week are you on now?

@LetsBeSensible that's awful. 😞 . I have a handful of very close friends and I have to say, they've been very understanding during my illness.

if they're good friends, they'll be back. People who haven't had long Covid can't begin to understand how it's impacted our lives I don't think.

@Norugratsatall five months this week. Hang in there everyone. I have been so careful not to do too much. I have worked and looked after kids but no exertion at all for 2 months. Still going to not exercise (very hard) until I have been 100% for quite a while.

@Norugratsatall Thanks. It was both of them at the same time that made it worse! I really have a thing about “ending” conversations. I wouldn’t hang up the phone without saying “bye” and I wouldn’t just not reply to a person I’d contacted if they told me they were unwell.