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.

@Needsomegoodies sorry that you've had a return of symptoms after all this time. I hope they are short lived and also that your DD is okay.

@godhelpusall and @findingschools4myboys I know you both had nasty relapses recently... are you through them yet? 🤞🏻

@seriouslynonames I've just had an eye test as my eyesight has deteriorated over the last 6 months (no black spots or floaters though). The optician confirmed that it was entirely due to my age (and also I think I was more aware of it as I was using my laptop a lot in bed). My eyes are also really dry so I have drops to put in them.

@fedupofbed pretty much yes, although I'm now angsty in the mornings and then depressed after lunch until I feel ok mid afternoon. Not sure how much is whatever weirdness is going on and how much is coming out of such a hideous relapse after nearly six months and the attendant stress that has gone with it. I'm increasingly convinced that it's mast cell activation syndrome and in my case, autoimmune vasculitis. But I need to convince my GP to explore!

@seriouslynonames my vision has also got worse. I have floaters, but likewise cannot figure out if that is causing the problems. Also struggling to focus. I have booked an eye test so hopefully find out more then.

[quote fedupofbed]@TiddleTaddleTat yes I did a lot of those things. I used compression socks, did very gentle exercises lying down, drank loads of water, snacked on salted peanuts, I have coconut water every morning and also used electrolyte drinks. I think all this helped but as ever not sure as could have just been time. Now my heart rate is far less spiky but too low and I'm confused as to what's best. I'm sticking with the coconut water, fluids and salty snacks.

Does anyone have any experience of weighted blankets to help sleep? Or will I just be throwing more money away trying to find the magic cure![/quote]
@fedupofbed My DD who has ME uses a weighted blanket to sleep. She now consistently has a sleep score of high 80s, early 90s on her Fitbit. She does take melatonin too, but it seems to have helped with the sleep quality. We got it from JL. She loves it.

The only thing to note is that moving it raises her HR and then it takes her ages to go to sleep. She's bedbound atm post Covid so just uses it at night, and we have to pull it over her at sleep time so her HR stays low. She also couldn't cope with it when it was hot in the summer.

Ah thank you @BonnesVacances that's really timely as a friend has just offered to lend me one. I'm so sorry your DD is still bed bound, what a tough time for her 💐.

I can't remember who recommended Paul McKenna sorry but thank you! I'm now using the audio every night. It definitely helps me drop off but I still need to conquer the constant waking/ very light sleep. Hopefully the blanket will help.

@godhelpusall glad you're through the worst - let us know if you make any progress with your GP.

@fedupofbed Paul McKenna was me, so glad it’s working for you. I need it less now but so helpful to know it’s there if I do need it.

Good day for me here, but coughing. I always cough on my good days. So bizarre!

Well what a quiet day it's been here today. I hope it's because everyone's feeling well. 😊

I went to bed at 8 exhausted and have woken a couple of hours later with the familiar pains in my shoulders and arm joints. I was worried as I had the brain fog and intolerance to noise I get with a relapse. I had such a good day and had been doing much better.
My period is due at some point so maybe it’s that.
Having a ‘don’t know if I can do this anymore’ moment

Gah @Criticallythinking I'm sorry I spoke too soon. How are you feeling this morning?

I definitely overexerted myself yesterday so wondering how today is going to play out.

Morning all, sorry to hear about relapses. I also woke yesterday with dizziness, upset stomach and fatigue. Hoping it's brief!

Also with people's theories that symptoms are worse at the time of the month, is anyone on hormonal contraception? I've been needing to sort something out for a while and wondering if that might help even hormones out? What do people think?! I trust this group more than I do GP advice!

@fedupofbed I’m not too bad. Pain in my arms which isn’t as bad as it used to be. Serious brain fog and tired. The relapses aren’t what they were but everytime I hope it’s the last. I’ve got a quiet day today and have roped in help for the school pick up. I hope you are feeling ok today?

@givemeanother I think my period is due actually. I have a mirena iud but still have periods, very light and not painful. But I still get PMT and also seem to get these relapses before my period. Last time I came off the mirena my periods and pmt were much worse so I personally rate them.

@Criticallythinking I often find the few days up to period is like a mini relapse, after a few days I often start to feel a bit better but I don't see a really clear pattern any more.

I'm feeling so so. Good couple of days where I could absolutely prioritise rest. Then a busy morning yesterday and today and I noticed I felt really hot (although temp was 36).

Got a new fitness tracker - had a really cheap one before that wasn't very accurate. No I have a Fitbit charge 3 and can see when my heart rate is getting too high - I now notice feeling 'off' if it goes above 80.

Baths and showers get the bpm up to 100 and best case scenario result in a couple of hiurs rest after - worst case if I'm also busier than normal, doing more steps etc - results in a relapse.

I've also noted that my hr seems to be highest in the late morning , regardless of what I'm doing. Useful because I'm phasing back into remote work so I am trying to work around these limitations , but aware I may need another period of sick leave if this doesn't work out.

Hi all,
Extreme dizziness the last couple of days. Almost swaying when lay down with my eyes closed last night, felt very sick and dizzy this morning, almost felt lobsided in my body..if that makes sense.
Not felt that level of dizziness since May/June.
Haven’t slept much recently as family here. Day 7 of cycle so can’t eveb put it down to being period related, as it’s over. Can’t eveb see a pattern now..there’s no real relapses with me..there’s better days and less good days..and that’s it. Can’t see an end to this at the moment..just over six months.

*Even

Anyone else with dizziness? Why is it returning to that extent..I kind of give up right now. Nothing seems to make a difference, none of the supplements, healthy eating etc 🤷‍♀️

The pain in my teeth/gums too..I just don’t understand any of this

@Whatnext2018 I’m so sorry you are having a bad time. I share your feelings about lack of rhyme or reason. I’ve been hanging onto the idea that as we all get better the fluctuations become more noticeable, and that it is harder then because we are getting days that are more normal. You don’t know that supplements and healthy eating are not working and they probably aren’t hurting which would be true at any time. But I guess for us all they won’t be a quick fix.

I’m in relapse and having the pain in my teeth/gums today. It does sound like a lot of us are following a similar trajectory. Maybe this is all part of the process like one of those toys you wobble about and eventually it rights itself.

Waffling now! Sending and hope you feel better soon

Hi all, joining for the first time. I've had Covid symptoms since 12th March. The cough and temperature went fairly quickly but the lung problem has persisted, along with feeling tired all the time. I was so fit and active before this. Now I feel as if I'm breathing in feathers. Not all day - it comes and goes. I had been feeling OK last week and probably overdid the exercise because I am struggling with small tasks now. I haven't contacted the GP but I'm really sick of feeling like this now. Would my GP be able to help, do you think?

@Criticallythinking Thank you 🙏
Sorry you’re feeling so rough too, how many weeks are you? I ‘Think’ I’m either 25 or 27.
It’s just such a strange thing isn’t it, how it comes back? I don’t understand why or how..
It’s also the intensity of the symptoms and then how it’s just..gone/better (for a while at least)
This morning’s dizziness was pretty horrific, I could barely see straight...by 10am I was ok a lakeside walk with my parents and dd and having a tea. I still didn’t and don’t feel great, but I could function.
First thing this morning, sat on the sofa, I was almost in tears to my mum, it’s bizarre.

I hope it is a case of noticing the down parts more because we’re getting better and it’s more pronounced when we do feel bad.
I don’t even know what a relapse is anymore 🤷‍♀️
Noticing my hr is low again today, think that happened around the few days after my period ended last time too..so there’s perhaps something happening there.

@MirandaGoshawk welcome ! I started with symptoms on 11th March so we have had a similar time period. I would speak to your GP, hope fully they are more clued up now than some have been previously. It is getting noticed now.

Has everyone seen the BMJ webinar on long covid? Worth a watch
https://m.youtube.com/watch?fbclid=IwAR1uDWEHQSNyZclqv4T7hF07OdhSI6sTTHmA1gqBfV9F-LWbuFqTwnTpk&v=zTrIl52jV0ss_

Ok, so I think...I had a wee relapse during my period last week, but the symptoms seem so subtle now it's hard to know. I definitely felt more "fizzy", I expect to during my period. @Meercatmama I have noticed that I have a "good" period, then a "bad" period (hence identifying the 8 week cycle). But...with each cycle, the symptoms seem to wane... Except the fizzing/burning skin on my hands. That doesn't give up. I am now convinced it's nerve pain, because menthol cream seems to help ("distracting" my nerves from the pain).

Nothing much else to report, folks. Just checking in.

Thank you @TiddleTaddleTat

Lots in the media today, this feels very familiar!

I finally spoke to the GP today about the a&e docs recommendation that I'm referred to the chest clinic...AND she's referring me to a covid clinic instead which she thinks would be more appropriate.

I'm delighted, finally! Am based in SE London so seems like things are beginning to move on. No idea how long I will have to wait or what they will say about long haul covid - I will of course update you when I've been.

@AndsLee and @Whatnext2018. I don't tend to have 'relapses' as such either: just 4 or 5 days when I feel a bit more like 'me' followed by another 4 or 5 where I don't! In these periods, I sleep badly, the tinnitus is ramped up, I'm emotional and agitated and chest symptoms seem worse along with general aches and pains. I've tried to see if there's any correlation between these bad periods and doing 'too much' (either physically or mentally) and there doesn't seem to be! It's just my post-Covid rhythm.

Stress is a major factor on deterioration of symptoms. I had the latter half of Aug off work and definitely felt better and calmer but I'm back now so it's no wonder my stress levels are higher. I don't even have a particularly stressful job; just in my weakened state, I'm unable to cope with anything vaguely stressful at all at the moment!

It's very strange. 😕 hope everyone is having the best day they can. ❤️

@Norugratsatall Yes, I’m trying to work out a pattern too..I initially thought was around 10 good (well, a bit better) days, followed by 10 on average bad days..then I thought it may be tied to ovulation and period, which I do believe has an impact. But now I’m seeing random symptoms since around Saturday, definite changes in moods and emotions and now the dizziness. That started four days from the start of my period, so no strong link to hormones 🤷‍♀️
I’ve not slept well for days also, but could tiredness really lead to such a relapse in our symptoms?
I agree stress in a huge factor. I do worry that my moods are out of control sometimes, the way I feel inside at times doesn’t seem right, such a horrible illness.

How do you all feel? Do you feel we’re making progress and we will be free of of it all?
I have days when I feel really positive and others when it’s back again, when I feel it’ll never end!