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.

@AndsLee - ah yes how did I forget the twitching! My right eyelid twitches a lot, but more when I am stressed in a conversation

Very interesting to hear (in my ringing ear!) about your left side.

I spoke to a Doctor of tropical diseases, he was adamant that all Covid patients (tested or not) should have been seen in a similar pathway to Stroke patients.

I look forward to arriving at the end of this troublesome journey, I will well & truly look forward to disposing of all the excess baggage when I arrive.

To be free again, to run on the beach and to feel amazing again - chin chin

@TiddleTaddleTat - Thank you, I will try the tumeric. I had a youtube video on last night, birdsong & waterfall, it drowns it out.

I think that made me cry, having to put the white noise on again, after 6 months. It made a lot of horrible memori3s come back, I feel quite traumatised at times (when Im tired)

I did suffer flashbacks in April/May.
Definately mild PTSD.

We mustn't underestimate what we are going though.

Thank you @AndsLee. It certainly does feel as if the breathing and heart galloping could be connected to acid reflux in some way.

To be free again, to run on the beach and to feel amazing again @Ernieshere exactly that! I have daydreams about running, dancing, hikes. I feel like my home has become my prison, but in a strange way I don't mind... yet. Usually I would get very bored of this, so it's telling that I am accepting it.

@fedupofbed sorry to hear today is a low day. Perhaps you are seeing post exertional malaise on a 48 hour pattern? Mine seems to be between 24-48 hours, and I understand it varies a lot from person to person. Your taking it easy yesterday will have helped a lot so hopefully tomorrow you will see some improvement. I've found the mistake I'll make is overdo it, then wake up the next day feeling ok so overdo it again, and then the relapse is so much worse.

I'm doing about 3-4 hours of light remote work at the moment. I'm enjoying the distraction from thinking about health for a bit and being 'normal', although then I walk upstairs and have to sit down half way and realise I'm still a long way from normal.

@TiddleTaddleTat interesting about the post exertion. I’ve been trying so hard to work out what causes the changes and I am struggling. End of Aug did a whole weekend away, talking to friends, physically active and no repercussions. This week my brain fog is insane and I haven’t done anything special. The only thing I can think is that I’ve been very caught up with life admin, school admin etc. It’s so frustrating.

I did wonder if anyone else is getting angry about it all or if this does mean I’m definitely having PMT

@Criticallythinking do you think the life admin etc has caused you a lot of stress? Emotional energy and stress is above all the biggest drain for me.

@TiddleTaddleTat yes possibly, getting DS back to school has been an adjustment and he had been full of cold so we have had disturbed sleep, plus presume I’m fighting it off.

Bit panicked because I had brain fog and anger before my last big relapse which lasted 2 months and was truly aefuk

Awful

Have had relatives visit but been reading along. Hope you’re ok @fedupofbed
My GP said he was referring me to CFS services but he’s referred me to the pain management clinic. Am going to have to have a word as to why that is, as I’m primarily bothered by fatigue. And I’ve been to the pain clinic before - twice- so not sure what this will achieve...

@Ernieshere I hadn't really thought too deeply about this but yes everything is on my right side too. Right lung burns, right ear buzzing, right arm muscle weakness (now resolved). All the skin rashes though and Covid toes (now resolves) we're on the left! I'm really sorry you're suffering so much - do give the turmeric a try (although it hasn't helped me as yet).

@fedupofbed sorry you've been flattened! The fatigue is awful is t it? I just can't fight it when I get it (which isn't every day). Today hasn't been a good day, searing lung burn and the fatigue hit at 4 pm and I couldn't stay awake. Suspect I will be awake half the night now.

I like the analogy that this is a journey. I hope we're nearing the end. I really really do. 😕

@Criticallythinking yes I've found return to school a big adjustment too. Even though my DC are older and DH is doing packed lunches and dinners, I've still found the extra admin and the sheer effort of getting them out of the door on time/with everything they need quite exhausting. I hope you get a good night's sleep and your brain fog is short lived, and doesn't lead to anything more.

@LetsBeSensible ah that's not very helpful of your GP. I'm still waiting for my referral to the NHS CFS clinic. I have a private Zoom appointment with a specialist tomorrow though. I think it will be very interesting to get his take on my symptoms and hear what advice he gives.

@Norugratsatall sorry your day's not been great either. Yes the fatigue is crushing. I hope you manage to get some sleep tonight too. I'm sure that's half the problem for me. If I could just get productive sleep... 🥱

I think I’m conscious of the fatigue as it’s been commented on. It’s nice that relatives are recognising it. I do not want to get to the pain clinic and say “I don’t really have that much pain!” And they say fine well off you fuck, then!

Does anyone think we should or shouldn't have the flu jab this year?

Do you think we will be o.k with it or react to it?
God, I wish I knew
I usually get mine through work.

@Ernieshere I've been wondering about the flu jab. I'm really in two minds about it. Usually get it, not through work but was at a high risk of catching it through my job. However now the main risk would now be through DD.

I usually have the flu jab and it’s not made much difference with my CFSME so I think it’s fine. It’s not active infection in the vaccine

@Ernieshere I have been wondering the same thing. Everytime I catch a new virus I have a relapse and I’m worried the flu vaccine will do the same as it elicits an immune response. I have had it every year since I had flu in 2004 and ended up having lung surgery. So I want to get it but I’m so scared!

Just checking in as I've woken up! I haven't posted for a while as we went on a short break then school and return to work started. It's been full on and I'm finding the early mornings really hard. My throat and chest feel uncomfortable and tight as I've had to talk a lot more than I have been for months. Not helped by impending 'restructuring ' at work and panicking about that. Unfortunately I won't know what will happen for a few months so it'll be hanging over me. It couldn't have come at a worst time, I just haven't got the energy for it all at the moment.

@Lightsabre sorry you were awake and that things sound so stressful. How long have you been back at work?

I’m definitely in relapse. Feels like the worst since July. The waves of nerve pains are not as painful but my joints are stiff and now I’ve added overnight diarrhoea into the mix. The only thing that has happened is my DS having a cold, which I haven’t caught, but this happened with my big relapse back in June when he had picked something up. Feeling like I can’t take it anymore- due to start work next week but I’m useless. If it is due to exposure to other viruses I’m pretty screwed!

I see the Government have finally put this online, unless I missed it months ago and its been re-written - Its nothing we don't know by the way, as we are still living with it

www.gov.uk/government/publications/covid-19-long-term-health-effects/covid-19-long-term-health-effects

My huge worry about the flu jab is the effect it may have on the Respiritory system.

I may have to leave it this year, today I have a red raw throat, hurts so much to swallow, DC has had it for 4 days, (returned to School last week)
She had to have Monday off school she was so bad, so now I have it, its making me feel breathless and tight chested again.

I was awake 02.00-06.00 last night, and slept 22.00-02.00 & 06.00-07.00.

I felt good yesterday

@Criticallythinking sorry to hear you are enduring another relapse. Stress about work won't be helping. Is there any way you can push back your start date?

@Ernieshere argh, you are me were crap sleep buddies last night then. I don't know what happened but I just couldn't switch off. My breathing was weird, I did breathing exercises and felt calm but just didn't drop off. Went to bed at 10, fell asleep about 11:30, woken by DH coming to bed and snoring, asleep finally, DH buggered off at 2am having had enough of my tossing and turning, then I was awake from 2 until about 5am... mindfulness sleep thing helped eventually. Then back up at 7.40 to get DD ready for school

I have been sleeping well lately , the only trigger for such a crap night for me is that I got a bit stressed shortly before bedtime trying to get the cat in a room. Cue walking up and down stairs and raising my heart rate. It was as though my sympathetic nervous system was switched on and was completely resistant to calming down. I hear that this is common in CFS/ME.

Also found that throughout the night being very tired meant more of my old symptoms came up - earache, twitching muscles, rib cage pain, chest tightness. This virus is an absolute bugger !!

Yes, I think not sleeping enough seems to trigger other symptoms as does stress I'm finding.
I am going to have the flu jab as I'm very exposed to it due to my job. I'm so worried about it but not as worried as I am about getting flu!

I have been feeling almost completely recovered just the odd chest twinge. Had to do something very physical at work today that left me very breathless. Have burning lungs, bad pain and sob going upstairs tonight. Haven't had these symptoms in months 😩

Aw bugger @Kitcat122. Hopefully a night's rest will set you straight.