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 have you watched the latest RunDMC video posted up thread? Some recent research suggests exactly that, the virus is continuing to live in the guts of long haulers.
I've had some minor effects from antihistamine but not enough for me to continue to take them regularly. Itchy skin and rashes are fairly minor for me in comparison with the PoTS symptoms which are pretty significant and leave me housebound still.

Hello everyone. I'm just muddling along. My main symptoms are still breathlessness, extreme fatigue and funny heart symptoms.

For those with orthostatic intolerance, I've just bought a mini recumbent bike thing (about £20 from Amazon). It's really interesting because I can pedal steadily away with practically no change in heartbeat at all yet when I walk/ empty dishwasher etc it goes up to 120. So i guess it shows that it's orthostatic intolerance rather than just deconditioning? I don't have any spike when I stand up now so I guess what I have is mild. But for me sitting down pedalling is hopefully a way of building up activity without over exerting myself.

A belated hello to @Lightsabre - I know you've been on this thread for ages and ages too. Glad the latest blood results were normal. It's such a mystery isn't it?

@Criticallythinking not heard from you a while ... hope all is going okay?

Love to everyone.

Hello. I had covid over half term at the end of October. I'm now mostly recovered, and I've been back at work for two weeks. I just don't feel great though - run down, chest and back pain, and a dry cough. A bit like breathing through dust. Very fed up with it all. I went for a short walk this morning, and have had to spend the afternoon on the sofa.

Hello folks...

So I had a day off from work yesterday. I have to say, I felt relatively normal. The "breathing thorough dust" sensation still rears its head, but I seem to be able to "breathe through it" now. What I mean by that is, kinda suppress the symptom by breathing deeply. I am not sure if it's the antihistamines, or simply time that is making the difference.

I am also aware that I can lie/sleep on my left side again, which is something I have been unable to do since March. For some reason (I think to do with my stomach), it has been uncomfortable, and sometimes inducing the "breathing through dust" sensation. This seems to be calming down...

I was a wee bit disappointed to have some "breathing through dust" this morning, but like I said, it's less intrusive and I am beginning to learn to deal with it. I guess I am relaxing into it rather than tensing and wondering if another breath will be effected by the sensation. I guess this all points to the idea of laryngeal obstruction again.

I still have a bit if lavedo on my arms and hands. I still get the odd "burning" sensation, but it seems to subside quickly. My period finally arrived after some sporadic bleeding for the last couple of weeks, which may be why I felt normal yesterday.

I am wondering... I had a bout of unpleasant bathroom shenanigins last week, think I maybe got shot of more rubbish that was in my gut?

Thanks @fedupofbed - it's the thread we didn't want to be long termers on! The breathing issues are a pain. I'm hoping the long Covid clinics will be able to find out what is causing this for many of us, especially when a lot of us have had clear lung/chest X-rays and negative d-dimer blood tests.

Hi everyone, sorry to see us all struggling with the same old, same old.
My new symptom seems to be nausea in the middle of the night that lasts through the morning. Was up for hours in the night last night.
@fedupofbed recumbent bike sounds good! Do you sit while you do it? Interesting that your heart rate increases so much with walking and not so much on standing. I guess that does point to deconditioning (which we will all suffer from) rather than OI or PoTS? I find my heart rate is lower on walking than standing still (which is the worst for me), although I get dizzy on walking and think my heart isn't pumping fast enough, or something...
I am starting to increase activity, have the support of a physio I'm seeing privately and am focusing on supine core Pilates type exercises for now.
Managed to pick up DD from school today for the first time in over 6 months. Quite emotional! The plan is to do it once a week at first, and my core exercises daily but not on the days I walk to school. It's literally 2 minutes walk away, but that's where I'm at.

Just asked my doctor again and still no long covid clinics in my area...

I found this on Slack and thought it was really interesting. Leading ME CFS specialist Nancy Klimas giving advice for Long Covid based on her research and experience of ME CFS.

@TiddleTaddleTat hooray that you picked up your DD. What a milestone, and must have been very emotional. I bet she was so excited to see you!

I'm sorry to hear about the night time nausea though... that's a new one.

Yes basically it's a set of pedals on a stand so you can exercise sitting down. I was surprised by how low my heart rate stayed when I was doing it. Have you found your physio helpful? That's another thing I'm thinking of.... just to help me put some structure and balance into building up strength. I've also just signed up for a 3 week group course with a fatigue coach, again recommend on Slack.

@fedupofbed ah ok, I think I've heard of those - do they go under your desk when you're working?
Physio has been really helpful as she knows when to push exercise and when to hold off. She's being very cautious with advising me to increase any sitting or standing exercise because of the PoTS. She's a specialist in ME and I've asked how I'll know if I have ME too and she's said it is a process of elimination so start building up supine exercises and see if my symptoms reduce (which would suggest just PoTS).

In terms of a schedule you could very easily create something yourself - basically I have a mix of supine core exercises with a minutes rest in between each. Only doing a handful of reps of each exercise. No yoga as I'm hypermobile but some yoga stretches mixed in are nice for most people.

It was a revelation when she advised that yoga doesn't suit hypermobile people - I've had years of trying yoga and never quite getting on with it (causing myself injury etc) and now I know why.

I will wait until this evening/tomorrow to see if I get any PEM from the walk to pick up DD. Fingers crossed I get away with it. The walk is up an incline so more challenging than on the flat.

Yes @TiddleTaddleTat that's the one. I've emailed the Physios for ME people today as I think I need more guidance. Since my cold / relapse a month ago my symptoms and level of illness is really erratic - I don't know how I'll feel from one day to the next and it's really hard to unpick what's causing what/ if there's delayed PEM going on. For example yesterday I had acupuncture (but she was super gentle with me) then I felt better than normal in the afternoon and did a few minutes on my new pedalling thingy. I slept badly. Today I feel much more tired than normal with aching leg muscles. The aching muscles are not particularly bad (in fact they almost feel 'good' in that they remind me of my previous life after exercise!) and are undoubtedly caused by the pedalling. But is the worsened tiredness due to the pedalling, the lack of sleep, the acupuncture, or something I did the day before, maybe work/ a zoom meeting with manager? Should I therefore do nothing today or continue with my gentle yoga stretches? And will I feel dreadful tomorrow?? Sorry, this is a bit of a monologue!! I find it all very hard to unpick.

Crossing everything that you get no payback from your walk 🤞🏻🤞🏻.

I'm new to this thread.
I wonder if anyone has similar. I tested positive 5 weeks ago and since then have had a heavy chest. I suffered badly at the time and had paramedics out but seem to have recovered apart from the bad chest. I am having a chest x- ray next week referred by go. I'm a 59 year old female. No underlying issues and average BMI.

Hi everyone Glad to see some improvements in you all and that you are some if limited support. Not been here for sometime as I have been working. Still getting very tired and have some aches in my chest when I overdo things and at times can feel breathless. My anxiety seems to have lessened but i still find it difficult to concentrate for a long time. It is funny but when I wake up first thing in the morning it takes my eyes a long time to focus on small detail even with my glasses on and then after half a hour it is back. Wishing you all well

@fedupofbed agh, the unpredictability is the worse. Maybe your higher fatigue today is mainly the poor sleep compounded by aching muscles from the pedalling? I certainly get much more achy after even minor exertion now. I read somewhere that post viral syndromes cause a build up of lactic acid hence the aching. I don't know if that's codswallop though!!
Hope you feel brighter tomorrow. If I have a bad night's sleep I usually get a dreadful following day, then one that's a bit better, then back to how I was before. Sleep is so important and so it's very frustrating when you just can't sleep or wake up in the middle of the night. I often find poor sleep follows a stressful day, so it's a double whammy of emotional exertion plus the poor sleep that then really hikes up the fatigue.

Thank you @TiddleTaddleTat 🙏🏻. Yes sleep is so important and I always seem to struggle more after my better days- like I can't switch off. I hope your night time nausea has cleared now - maybe hormonal?

Hi @Meercatmama 👋🏻 glad you're still managing to work despite the ongoing symptoms, and that the anxiety levels are going down. I hope you continue to improve.

@FirstTimeHome sorry you've had such a tough time, and wish you well for your X-ray next week.

Hi all, I’m back on the night shifts...I seem to have improved the last few days. However sleeping the whole day when I had the migraine has ruined my sleep cycle.
I’ve got an in-person hospital appointment with the ENTin a few weeks. Still waiting to hear about a CFS appointment.

@fedupofbed I think it probably was hormonal (leading up to ovulation). Had really bad palpitations last night. Definitely something to do with hormones. I understand that histamine, cortisol, and the immune system are all bound up with hormone regulation so it's no wonder really. The question is what on earth I can do about it that I'm not already doing.

@TiddleTaddleTat I know, it's so frustrating. I think at the end of the day it's about time and rest. But who knows how much more time 🤷🏼‍♀️?

I had a bit of a rubbish night too, with a pounding heart and angsty feelings. Podcasts are my friend. Wishing everyone sweet dreams tonight.

Does anyone else get neuropathy type symptoms? I've had the reoccurrence of my fizzy/buzzy tingling right calf and leg pain. Always makes me worry it's a clot but then I realise I get it in the left foot mildly too. Got me looking at small fibre neuropathy which is often seen in PoTS and dysautomnia apparently. Something I'm going to ask at my follow up, just wondering if anyone else got this?
It seems to flare alongside my other main symptoms - tinnitus and palpitations.

@fedupofbed sorry to hear about crappy nights sleep. Podcasts are a great idea. I tend to just go and sit with my cat, but only when I've wel and truly given up trying to seep

Actually I'm thinking these symptoms of restless leg syndrome sum up what I'm experiencing

Just back from my respiratory follow up appointment. He's completely flummoxed and can't really do much more for me, as despite feeling breathless my lungs are fine. He suggested seeing a physio for reconditioning, which is timely as I have my first appointment with an ME-specialised physio on Thursday (I suspect she may be the one you're seeing @TiddleTaddleTat ).

I wanted to post my experience with covid...I started with symptoms just over a month ago and I'm still struggling with certain things. My lungs feel weird (bubbling) and I'm still breathless and my joints are achey. Im having a bit of a fed up day with it all...I've got an asthma check up next week and hope they can figure out what's going on with my lungs/breathing

Hi all,
How is everyone doing? Had a better few days after quite a few bad weeks-internal trembling, dizziness, really bad headaches etc. Was possibly in the lead up to and during period as was quite a long and heavier one (first proper one since March)
Still with lots of aching in the chest/heart area at times, dizziness and trouble focussing this morning on waking.
Can’t actually believe this is almost 9 months in and still not back to ‘Normal’ wonder why others improve more quickly and some of us don’t..

Been feeling recently like my head is swelling, lots more headaches too, anyone else?

New video out by Gez Medinger, very much on the MCAS bandwagon. I think there's something in it and yet I'm a bit wary of the fact that this isn't recognised by the NHS.. not to say it isn't credible only early stages. I remain unsure about whether it's ok to take antihistamines long term , even if they are OTC...

m.youtube.com/watch?fbclid=IwAR1PN8BE043zoSKR7luammZZ_9dEaw6eeaklPyPHFsmluZziMkRjG90hw4c&feature=share&v=sICD0Kn6pR4