Covid lungs thread 18 weeks plus - thread 2

[LetsBeSensible]

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

@AndsLee just saw your message about c3 and c4. You must be relieved! I’m waiting for my results hopefully next week. Have gone into another relapse... have a sniffle so I’m blaming that. Had a blissful 4 days between relapses...Hope you are doing ok today xxx

@BonnesVacances thank you for posting about your daughter's experiences. It sounds terribly hard. It has been really helpful for me to hear your insights and the info you've had from the specialist, thanks for taking the time. I hope the new medication and other changes you're making will help improve your daughter's symptoms.

@BonnesVacances thank you so much for posting about Bearable, this is exactly what I have been looking for to log symptoms! Am an excel junkie as well.

@Criticallythinking snap on the 6 yo! Also a DC at nursery so yes... a zillion minor bugs in constant circulation. Like you I really am starting to think now that my relapses are caused mainly by fighting off other colds and viruses. Even a tiny skin infection in August set it off straight away, I remember the paramedic who gave me antibiotics out of hours while I was on holiday then telling me that was what he understood was happening with post-Covid, he had had SARS in China and said it was the sane for him while recovering.

Did you notice you had less relapses during summer hols when DCs weren’t at school? I’m worried too this may be us for the whole winter

@BonnesVacances
Thanks too from me for coming back to update, though I’m so sorry to hear what you and your daughter are going through.

I’ve been messing around with bearable (new toy) the great thing is, if has a Fitbit and would like to download the data from it (hr/steps/sleep) you can link them and get it via bearable as an excel csv file. I now have 2 years worth of data - pre and post covid!!!!!
I got a letter for my CFS appointment later this month, so going to be making me some before and after graphs....

@Whatapickle78 I remember you mentioning the paramedic- really interesting to hear from someone who had after effects of SARS. I seem to have had bad luck over summer, I didn’t have any colds but got a stomach bug (just diarrhoea) early Aug when ds was at the the childminder. But since he went back I am on my second relapse. It’s going to be a long winter!
A friend who had glandular fever said she seemed to catch everything going afterwards and was not right for a long while but then her immune system seemed to reset. I hope it will be like that for us.

@keepdistance I had blood tests 3 months post Covid. The doctor said I was borderline and prescribed levothyroxine. However my sister in law is a gp and was annoyed as she said I should have had a second blood test.

Im wondering if my insomnia was from vit d. As i wasnt always taking in morning. Apparently inhibits melatonin.
I was also sunbathing some too though not now obviously.
And that may have impacted my thyroid.

A friend has just tested positive. Very similar symptoms to me at the beginning. That has now convinced me, what I had in March was Covid.

@AndsLee you know very well that those of use who didn’t test positive months and months after the three day window the test is supposed to be done, didn’t have covid. We had the other virus. That’s similar to the brand new covid virus in every way. Obviously.

@LetsBeSensible Oh yeah! Silly me! I forgot that there is this other virus that is exactly like a completely new virus, but unlike any other virus previously known, that we all must have picked up during the height of a pandemic! Doh! My bad!

Hope everyone sleeps better tonight.
I saw someone mention melatonin - I’ve been taking that for the past two weeks and it has made me sleep much more deeply, though the past couple of nights I don’t know what’s gone wrong! Feel shattered but wide awake in the middle of the night... am trying a Benadryl tonight.

I’d highly recommend Melatonin though to anyone who has had sleeping trouble. It’s nice that it doesn’t make you feel groggy the next day.

Xx

@LetsBeSensible Glad you're enjoying Bearable. And sorry to anyone who's mentioned me but whom I haven't acknowledged. I'm glad the info is useful.

Re melatonin, I'm a bit of an expert on that too. There are two types, prolonged release Circadian and a full-on hit you over the head with a shovel version called Bio-melatonin made by PharmaNord. Or some of you might be getting yours from abroad. So just to be aware that there are two types, so if one isn't working, try the other. Also it doesn't necessarily work better if you increase the dose and sometimes it's worth reducing it. It might just be trial and error.

I'm 7 or 8 months post Covid. Don't know whether what I had in Feb was Covid and when I was ill in March there were no tests.

I'm fucking over this now.... I'm currently laid in bed in tears because my glands are up and I'm completely exhausted but I can't sleep because my pelvic area is painful and burning, my legs keep going numb. I collapsed earlier.

My joints are so painful. My brain won't work properly.

I just don't know how to get up tomorrow and do all this shit again.

Oh and DH has taken the last paracetamol and I can't take ibuprofen because Covid left me with fucking asthma.

@tearstainedbakes sounds like you are having a very hard time of it. Sorry to hear that even after all this time you are still getting such disturbing symptoms. Have you had any help from your Gp or post covid clinic ?

I'm trying to improve sleep without taking anything, I think my disturbed sleep is at least partly due to my behaviour around sleep. Basically using my bed to rest during the day, and lying in bed constantly if I wake in the night. These things have taught me that bed is not just for sleep .
I was advised not to take the antihistamine due to existing concerns about palpitations and irregular heart beat, which can be worsened with antihistamine.
I spoke to GP who recommended a book on insomnia - CBT angle - quite good so far.
I'm currently trying to restrict sleep so I'm only in bed for the average amount I've been sleeping the past week. As this is 8h20 for me (in bed) and 7h20 (time asleep) for me, I set my alarm for 7.20 and go to bed at 11.20. So far this has meant I sleep through. This works better for me than having some nights where I sleep 9 hours and other with 4 hours, where I lie awake trying to breathe deeply and subconsciously getting increasingly frustrated and anxious.

@tearstainedbakes sounds awful and fully understand that feeling, I hope the morning has brought some respite and some paracetamol.

@TiddleTaddleTat great you have found a sleeping pattern that works. I had similar advice and I’m doing my best to stick to the bedtime thing - it takes me a while to get to sleep but I am sleeping in chunks which is good and an improvement.

I am trying really hard at the moment not to overthink my symptoms and instead just live through them. It’s so tough! I’m taking painkillers and an immune support vitamin and leaving it at that - I was experimenting with all kinds of vitamins etc but I did my two week break of supplements (for the blood tests) and everything was fine so I don’t think it was making all that much difference. I guess that makes sense if it is the immune system. Mainly I want to save money

Thank you @Criticallythinking and @TiddleTaddleTat I managed to get some painkillers at 7am and have at least slept since.

I think I have a UTI, I've never had one before but had one about a month ago. I'm currently on the phone to 111 trying to get some antibiotics.

I saw the GP who diagnosed long Covid and just said rest and time. I've had some good days but my job and family are very high demand so I can't really rest to be honest.

@tearstainedbakes aw so sorry. Everyone here completely understands what you're going through 💐.

@Whatapickle78 and @BonnesVacances thank you for the melatonin advice/recommendation. I've ordered some from overseas but I don't have any confidence that it's ever going to get to me! Think I'll have to go back to my GP and plead. I've been using phenergan and piriton intermittently but as others have said don't want to use regularly. I took one for the first time in a week yesterday though and slept like a baby!

@Criticallythinking I'm completely with you about the over thinking of symptoms. It's not helping me. My heart rate monitoring is a classic example - I'm constantly fussing that it's too high when I should be relying more on how I feel at the time and afterwards as to how much I can do. And I still get really panicky about my breathing. I'm pretty sure the breathing problems are because my body has literally forgotten how to breathe properly.

I think the human body and it's propensity to heal is amazing though, and I think all of us are so strong, and we will get there eventually. I was saying to DH today that I feel like the virus has taken hold of me and shaken me and shaken me like a jigsaw smashed into a thousand pieces. And gradually my poor weary body is trying to put together all the jumbled up pieces.

@tearstainedbakes sorry it’s been so tough. Recovery and demanding job do not make a pretty pair. I would advise you buy paracetamol every time you go to the shops. I did this about 2 years ago because I cannot run out if I get ill, and I live alone. That stash saw me through winter and covid lockdown.
@TiddleTaddleTat good luck with the sleep hygiene, I’m doing a @Criticallythinking and just trying to live for a bit then will regroup. Interesting about the melatonin, it never worked for me but didn’t know of the “other type”

@fedupofbed
I got mine from iHerb and it didn’t take too long... it’s Natures Bounty brand. Hope yours arrives soon! Absolutely know what you mean about the jigsaw analogy...spot on.

I slept like a baby last night for ten hours straight on the Benadryl. But woke up today with really swollen hands and fingers and I’ve had shocking lower back and tail bone pain again - haven’t had that since big relapse in June. Does anyone know why those two symptoms might go together? Is it to do with kidneys?

@TiddleTaddleTat
Such a good point about sleep hygiene... hadn’t occurred to me but it’s really obvious isn’t it? I will try not to lie down so much in my bed now during the day, and leave till it’s actually bedtime. Sometimes tough when hiding from children but will give the sofa more of a go.

Stopping in this morning for some moral support! Bad night in pain and cold has come out after days of sore throat and sneezing. But also got a tickly chest and it is freaking me out. Not a cough as such, but the constant tickle I used to get when I was recovering. On week two of phased return to work and wondering if I can do this.

Are our immune systems just totally shot and confused and making everything bananas?

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