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.

The difference between what I can do and what I should do is huge....
The fatigue videos and pacing were really good, helped to focus me again.
Been resting a lot and still sleeping 7-8hrs. Funny enough I had a funny tum a few days ago (and I don’t go anywhere to catch a bug) “the vibration” is calming down as well.
I hear that Prof Paul Garner has been seen jogging so he must be recovering well!

@LetsBeSensible please can you explain what you mean by vibration?

I think you posted a few days ago about your beating heart?

By that do you mean you can feel it pounding hard. Not necessarily fast but just feel it in very strongly in your chest / head / back?

I’ve had this none stop every day since March. It seems to reduce throughout the day and by the early evening it instead feels like a slow, long shiver. I wonder if you have this too but call it a vibration?

@MillStone I’ve had this on and off all along, during the worst time-May/June, it was everyday. I get it now during relapse..I always check my hb, isn’t high or racing, weird as this sounds..when it’s happemong, if I put my teeth together, they shake,

@Whatnext2018 sorry you e had it too. it’s horrible isn’t it and nobody I have asked has been able to tell me anything about it or what it could be.

I was prescribed beta blockers in April but I tried one and decided they really weren’t for me.

With regard to relapses from personal experience.
Got over the original virus after 10 days, 5th April.
First relapse was Easter Monday, lasted until about 28th April, then mild symptoms. Relapsed 25th May, then quite bad symptoms until
about 10th July from 10th July to 27th July thought I was getting there again, but then quite bad relapse. There is a pattern here somehow. I agree relapses not always down to doing too much. They're probably going to happen anyway. Hoping we'll feel better soon.

@MillStone It’s one of the worst parts, last night it felt like it was at the top of my chest and in my head..so hard to explain isn’t it, I’ve seen lots of people report the same on Fb groups. I thought I was alone in it at first, had no idea what was going on.

@BeautifulPark It just feels like a reinfection all over again sometimes, doesn’t it, so strange,

Sorry so many had bad nights last night - I’m joining this club too!

Ended up at an out of ours doc last night as a fairly benign looking cyst behind my ear suddenly got infected. My glands swelled up, temperature... etc etc I felt really awful.

Only relating this as interestingly the paramedic who saw me explained that normally, a skin infection should be minor and easy for me to shake off. But he explained as I was still suffering with post Covid symptoms my immune system needed extra help from antibiotics as it was going a bit bonkers, hence the infection had produced this quick reaction. This seems to tally with what others of you have speculated - that we may just be having big immune reactions to fairly minor commonplace bugs that normally we may not even notice.

He then asked lots of questions about my long term symptoms and explained he was interested having experienced the first outbreak of Coronavirus (SARS) while working in China. It took him three months to recover from the actual virus, then months of fatigue. He says even now years on, he gets very fatigued and falls asleep almost as soon as he finishes work. He said he is also now vulnerable to chest infections.

An absolutely knackering (but interesting) night! Hoping to get an early one now.

@millstone @Whatnext2018 yes it’s the strong “thud” of a heartbeat, the beat itself is normal. I feel like it’s related to your pulse as I feel it in my neck or chest. I know people have it, just wondered what it was?

Like we worked out what adrenaline surge was, that was always written off as anxiety for me in the past (stress you didn’t know you had is the actual diagnosis!)

@LetsBeSensible I’d really like to know too. At any point in the day when mine beats very hard I take it as an instruction to rest. On days when I rest a lot I find it almost disappears. On days I do a lot, it pounds.

@Whatapickle78 what a night you've had! Hope your infection clears and you get some sleep.

I'm not sleeping great at the moment so have started taking Piriton just before bed again. Not sure if it's affecting my quality of sleep but it does seem to stop me from waking up so often. Does anyone else take anything that helps? I'm also taking magnesium, Pukka herbal bedtime tea and eating a kiwi!

Hi everyone,

Another one that had a bad night last night, I sobbed for ages & ages. I was going to see if anyone was on here, I should have done

Its just all of it but especially the Tinnitus.

I rang Tinnitus U.K, they were great. Im going to ask for a referral to Audiology.

Ah I'm so sorry @Ernieshere that sounds like torture 💐. I hope you get a referral quickly. We're all plagued by so many random awful symptoms!

@LetsBeSensible What is the adrenaline surge from though? I never knew?
Last night was that stessed feeling, the pounding vibration inside but also felt like my head was all mixed up 😬hard to explain, but scary

@Whatapickle78 God, what a night! Glad you’re ok and also some reassurance there with what he was saying.

@Ernieshere Sorry you had such a crap night too, I get the tinnitus too when all the weird adrenaline stuff kicks in..it’s like it all happens at once

Sorry to hear of more poor nights sleep...hoping tonight is better.

@fedupofbed I take magnesium an hour before bed and kalms just before going to sleep. I don't know if they do much but I tend to find I sleep best in the early part of the night (soon after taking them) so might be working?!

@fedupofbed I usually have a cammomile tea, I take Magnesium anyway but perhaps should leave it to take before bed.
In the height of insomnia and all the fast heart rate etc, I took Valerian 3 x oercday and was prescribed three different calmers/anti anxiety pills by two separate doctors..when they thought I had severe anxiety..🙄 I didn’t take them but was very close to!

@Ernieshere I’m so sorry. It didn’t occur to me to post on here last night when I was up but I will do in future. Would have loved to chat you last night, I’m so sorry you were feeling so miserable. We are having to deal with so much over such a long period of seemingly never ending time.

@fedupofbed thanks. Sorry you’re not sleeping either! I take herbal Nytol for bad nights usually and it works on me. I take the one which is supposed to be two tablets per night (containing hops and other stuff besides valerian) and just take one tablet which seems to work. I’ve tried Nytol Valerian only pills and they seem to bizarrely have the opposite effect, and sometimes keep me up all night weeing

Prior to Covid, I had knocked my few years long insomnia on the head by starting oestrogen supplements and was feeling really pleased with myself...

Please tell me what the kiwi is all about!!?

Thank you @TiddleTaddleTat I'll try kalms next. I don't really like taking piriton all the time.

@Whatnext2018 I think all the adrenaline-type symptoms are because our autonomic system has been affected - the sympathetic nervous system isn't balancing correctly with the parasympathetic system 🤷🏼‍♀️?

Thanks everyone

I find it so hard, Ive done this for 5 months as a single parent with no family here.

Everyone is 100s of miles away.

DC is going to holiday club, that makes me cry. I know they love it there, really love it, but I feel guilty because I should be taking DC out as its the holidays and I can't physically do it.

I got an inhaler last week.
I went ro the optician as my vision has changed. She had to rule out the need for a referral in case of a clot on the brain. My peripheral vision was o.k thank god.
I just can't believe what this has done.

I know I have progressed, there was a time I couldnt get up the stairs, or make anything half decent to eat, so I know Im 60% better.

Thanks again

Thanks also @Whatapickle78 I'll try nytol too! Oh I read somewhere ages ago that eating 2 kiwis before bed helps you sleep 😂. Can't say it's had much effect!

@Ernieshere it sounds like you have done an amazing job looking after your children with no help throughout all this. You are so strong 💐. Please don't feel guilty as they're having a great time at holiday club while you get better. I know how you feel though as mine have been stuck to their screens for the last 5 months. It's slow going but we're getting though this - look how far we've come.

For anyone interested, kiwi info here:

thesleepdoctor.com/2013/11/26/kiwi-super-food-for-sleep/amp/

@Ernieshere That must be so hard doing it all on your own, can anyone close help out if you need it, a friend etc? I know what it’s like though, people are busy with their own lives and it’s hard to ask for help. We have no family here either and being home with toddler dd for 13 odd hours on the most challenging days is crazy hard.
You’re doing so well 💐

What’s wrong with your eyes? I often feel like I’m not seeing clearly and there’s just something different, they even look different to me at times in the mirror, but I’m not sure if that’s just paranoia!
I was putting the blurriness down to the brain fog and so on as it’s hard to feel properly awake and focused.

My eye sight's deteriorated too though that could also be my age! I have an optician appointment in a couple of weeks.

@Ernieshere you sound like such a strong person getting through all that, you can have a little cry and a blip!

@whatnext2018 the adrenaline surge was kind of like you feel like you’ve had a terrible shock or something then you go weird or shaky and feel awful. Exactly like you feel after if you just slammed a finger in the door. But with no known trigger. Something in your body tells it to pump the adrenaline all by itself. I’ve always had it with ME/CFS from time to time.

The thud/vibration is when I’m tired but comes in the morning when I’m sitting for an few hours. I think it’s some kind of autonomic system misfire (like adrenaline surge)
Other ppl mentioned buzzing and fizzing on FB it’s not that

@Whatapickle78 what a night for you, I hope you are feeling better now. How interesting though- I am more and more convinced that our immune systems have lost the ability to calm down. I wonder if this will ease with time or if we can do anything to help it.

@Ernieshere big hugs - I totally understand your guilt, currently sending DS to a childminder he doesn’t really enjoy because I need to rest and I feel awful. But we really shouldn’t as it’s the whole put your own oxygen mask on before you put theirs on thing.

@fedupofbed and others who mentioned sleep, my friend who has had the two serious recoveries recommended Paul McKenna I can make you sleep. The book is ok but the audio is amazing, I was sceptical but it gets me to sleep most of the time and even when it doesn’t work it relaxes me. You can get it on kindle and listen on your phone. Worth a go I promise.

@fedupofbed re sleep, I take melatonin gummies (2.5mg) and find that is the best thing to help me wake less in the night. They can be hard to source - I use a website called iherb.

Sorry to everyone else who is having bad nights. I do think we will all get better, even if slowly, but I also know that this virus has knocked my resilience levels and I get moments of panic and being overwhelmed. Main trigger for me is non-engaged GPs...I think many of my worst relapses have come after very frustrating phone calls with them..,but hopefully with more media presence, more are becoming familiar with this weird long haul syndrome.

I read this article yesterday - estimates 600,000 people in uk have long haul www.google.co.uk/amp/s/inews.co.uk/news/long-reads/long-haul-covid-19-post-viral-fatigue-syndrome-explained-573775/amp