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.

Oh don't say that @AndsLee! I think you're just finally catching up from months and months of sleep deficit.

Sorry you had such a bad night @Norugratsatall . It's such a vicious circle isn't it because the sleep really helps the healing. I hope you come through this soon. 💐

Hi everyone - im from threads way back and I've not posted for ages but have kept reading the threads. I still recognise lots of names,  to all still with symptoms. I'm on 6 months since first symptoms. I wanted to post as recently as I've been well but my left over symptoms have recently become more intense again.No idea why - I even worried I'd caught it again but tested negative last week. Main thing left now which I've had for months now is burning/tingling/fizzing/pins and needles in hands/feet/calves (doc thinks that is nerve damage?) and sometimes back of neck and inside head, and fatigue. I've even had a bit of the tummy feeling, loss of appetite and the burning lungs. I just read about your @AndsLee wrinkled fingertips which prompted me to post! My fingertips are wrinkled post covid, some days worse than others, sometimes v deep creases. That was a weird thing and I didn't know other had it. to all x

@emoojoo

Good to hear from you, although not so good to hear you are experiencing a relapse in symptoms. Your nerve pain sounds really similar to mine, I also was experiencing it at the back of my neck, but again this seems to be lessening. Did your doctor say that this would heal?

So have we all had the wrinkled fingers???

@AndsLee not sure really they just don't know :(

@emoojoo. I reckon it will, I have a theory about this. I think it's a similar thing to what experience post shingles. It's improving, just quite slowly. I was curious to know what a doctor said about this though... :)

*people

@emoojoo@Andslee
My symptoms same both yours. Yes I've had wrinkled fingers.
They seem quite common on facebook support groups.

@BeautifulPark @AndsLee relieved to hear others have same symptoms ongoing, as I'm finding them quite weird! Hopefully they will fade in time. They do seem to intensify on a cycle but I haven't worked out exactly. Definitely get worse with monthly perimenopause symptoms

@emoojoo Aye, I've found they get worse just before my period. But each period, they seem to become less intense...

I believe this is a common symptom for those that have had shingles... A friend of mine experienced similar after having a bout of shingles, died down after about a year he said.

@AndsLee interesting on the shingles thing, will try and read up, thank you! Another thing I notice 6 months on is that my voice goes weak hoarse if tired/stressed.

@Norugratsatall sorry to hear about your crappy night's sleep. My sleep has been poor lately too, some days it's really good and then others it's just inexplicably bad. When I sleep well I seem to often wake far too early, and it's not due to noise/needing toilet/hunger etc. 6.15 is the current internal alarm.
Like you I'll often try taking extra kales, magnesium, antihistamines etc during the night but at times nothing works. I just try and do breathing exercises but sometimes I just feel panicked and it doesn't stem from mental processes (like anxiety) but is physiological in origin.

Btw @fedupofbed and anyone experiencing fatigue who's already monitoring heart rate - I recommend the Cardiogram app. Someone mentioned it on the FB group and it allows you to see quite a bit more detail. I've realised I'm probably feeling extra tired the last few days because I've allowed my heart rate to get as high as 122 just pottering around the house and garden. According to the ME guidance I should be keeping it under 95 to avoid PEM, but it is really hard to do. I'm also quite a 'quick' person usually and always dashing about; so it's been a steep learning curve to slow down.

Thank you @TiddleTaddleTat - sorry you're in the same situation. 💐 and thanks to @fedupofbed too for your support. I'm still up at midnight (almost) because although I'm exhausted , I'm not sleepy. So here we go again... I hope everyone else has a good night.

@TiddleTaddleTat I hope you managed to sleep? I understand completely the anxiety of physiological origin thing. I’m getting it again with this relapse and it’s awful. Trying to explain to people that it is like something takes over my mind and I can’t stop crying and panicking.

I haven’t though to take antihistimines, does that work? It makes sense that it might help.

Only thing that has helped me with sleep is putting books and headphones in the spare room and having podcasts ready to listen to so I just give up on sleep and see it as relax time. But it isn’t ideal.

@Criticallythinking yes I slept ok last night thanks, although woke every hour from about 5. I'm much more sensitive to waking from DH's snoring too, but eventually drowned it out with earplugs plus noise cancelling headphones during a moment of desperation at about 5am!!

How about you?

I'm going to try and take it easy today as I'm finding the work video calls quite exhausting. Getting used to saying No a lot too...

Hi everyone. @TiddleTaddleTat thank you very much for the app recommendation. I've downloaded it, and it looks very useful for tracking and pacing. I'm similar to you in that if I do anything (laundry, dishwasher, etc) it spikes up to 120. Today I've done neither yet, and chosen to do Suzi Bolt stage 2 yoga this morning instead. It seemed to go well.

@Norugratsatall I hope you got some sleep in the end?

I've now got my letter from the ME specialist who says I likely have a prolonged and significant post viral fatigue syndrome, borderline for CFS/ME. Again he emphasised that I had a good prognosis. He said, and I think this applies to all of us with fatigue, it is important that fedupofbed remains optimistic and positive in regards to continued improvement and that she relaxes as much as possible, while at the same time keeping her muscles strong and active.

I've been given a prescription for an anti-viral, Aciclovir. He also attached a very in-depth information sheet with details of supplements for CFS/ME. There's a lot of detail on there but the particular ones he highlighted for me are:

L-Carnitine
PPQ/CoQ10
Vitamin B12 patches
N-acetylcysteine

The sleep meds he recommended are:
Phernergan (old fashioned antihistamine available from chemist)
Melatonin 3-5mgs

Therapies to reduce stress/ improve wellbeing:
Mindfulness meditation
Abdominal breathing
Graded muscle strengthening therapy (functioning muscle tissue releases endorphins. Start from a low baseline and increase by as little as 2-4% a week).

I'm sorry this is a lot of detail and not relevant to all of you! If anyone wants more info though feel free to pm me.

@fedupofbed

Sounds like he was thorough! Interesting to see that you have been prescribed with an anti viral... Let us know how that goes? xx

Will do @AndsLee though it's hard to know what's working and what isn't. I'm generally on a painstakingly slow but positive trajectory. There seems to be a pattern of a couple of days of improvement, followed by a decrease/plateauing out for 1-3 weeks. But every time my baseline gets slightly higher.

Covid Antibody Test came back negative. I am gutted.

@emoojoo@AndsLee Interesting about shingles. Locum GP
said sounds like Fibromylagia, lookup symptoms see what you think. I agree it gets worst in cycles, do you both have fatigue too? Mine comes and goes.
@Norugratsatall Thanks for info, hope treatment goes well. Let us know how you get on.
xxxxxx

@emoojoo That's exactly what my consultant noted. Symptoms akin to Fibromyalgia. I don't really have the fatigue element though. Just the burning skin thing.

I have now been punted across to Infectious Diseases. See what delights they have for me. I think, at this stage, it's Neurology we need...

@fedupofbed that’s useful thanks. I had a course of acyclovir in June I think.
@emoojoo hi, sorry you’re back
@AndsLee sorry you got a negative (like everyone who has had mild covid seems to get)
@TiddleTaddleTat am going to look at this app.
Feeling crappy today, voice gone and sore throat. Have a phone appt tomorrow for help and support. Was arranged by the job centre. Have no idea what this entails, is supposed to be to get you into work I think. I can’t even get into the shops most days rolls eyes ouch my eyes.

Decided to try and get added to the “vulnerable” group on supermarket delivery but I’m not on the vulnerable/shielding list. Might have to have a word with the GP as if we get locked down again I need to be on that list. I might message on the fb group because I can foresee a gap for people who’ve had it and are now incapacitated.

Im back on the old antibiotics for Pneumonia, hoping to feel better as soon as possible.

I knew at the weekend it was bad, I was coughing blood and my chest pains are back BUT I can confirm I have not had any real respiritory concerns which is a huge relief, I said out loud to my body "Come on, you can do this"

Im feeling positive about this in a bizarre way.

@fedupofbed thank you for posting his recommendations, that sounds pretty positive? It's also encouraging that I think you are already doing a lot of that. Did he prescribe the melatonin and the antihistamine or are they OTC? I might look into this myself.

By the way the physios for ME have just got back to me and one of them does private remote consultations. I might give that a go but am going to wait until I've spoken to the naturopath this week. I spent a few days on occasional, (paced!) exasperated phone calls to various hospitals until I finally got through to the enigma that is the post covid clinic. Going to get a call from a consultant next week. I don't think they would have contacted me so it's just as well I found them!!

Feeling OK here. I also follow a pattern of a couple of good days, then several weeks of lower functioning, then an improvement for a short time, etc. A marker of improvement for me has been my mental clarity and concentration, which - when I am well rested - is pretty close to my previous levels. However I can probably concentrate for about half as long as before, and it uses much more energy, etc. Still, I'll take that as a positive. I was fortunate never to have much of the 'brain fog' except at the very early stages.

I'd love to do some in person meet-ups before the weather changes, but mobility is an issue. I'm toying with the idea of a wheelchair.

Thank you @fedupofbed I did eventually !
That's all very helpful info from your ME specialist too. What caught my eye particularly was the 'good prognosis' and staying positive. This is what I struggle with sometimes particularly when I'm relapsing as my mood is always very low during a relapse. I agree with someone (sorry can't remember who!) who said that insomnia is very much part of a physiological response during a relapse - I think the same can be said of low mood and anxiety. I haven't explained that v well but hopefully you'll know what I mean. 😊

I remember my mum buying phernegan when we were kids! Didn't think it was still available. All good and helpful suggestions too so thank you.

@AndsLee I'm sorry you've had a negative test and I completely understand why you're gutted even though it's very common amongst long haulers. Doesn't mean you didn't have it as I'm sure you know. 💐

@Ernieshere I'm sorry to hear you're poorly with something else now. But hopefully the antibiotics should see you right. Take things easy (or as easy as you're able to with s child).