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

@Criticallythinking - Ok, so bloods have been drawn! Let's see what happens. Had my blood pressure taken today too, it was a wee bit higher than the last time. That disappointed me.

Also, a colleague is having to self isolate. That's knocked me a bit...

@AndsLee well done! I had mine drawn too!

Try not to worry about the isolating. It’s probably something else so many things are doing the rounds. I’ve got a raging sore throat today

Possibly a bit of ‘white coat hypertension’? Where your blood pressure goes up because of having it done by a doc? It’s a known thing!

@criticallythinking Yeah, probably. Plus I was rushing around this morning.

Afraid it's a Track and Trace job, a confirmed case... "sigh"

Got my ANA results back. Struggling to interpret them but everything says 'negative' and nothing highlighted so I think that's good news

@TiddleTaddleTat That sounds like good news...

All good wishes to those of you who have been having bloods done.
I’m weirdly energetic the last day or two.probably overdoing it.

Hi, sending good wishes to everyone. @LetsBeSensible I hope you're enjoying your extra energy, long may it last.

Nothing to report here really. I've had all my referrals now and everything's gone quiet. I'm continuing to rest at home, and gently build up strength with yoga and household chores. I'm doing lots of mindfulness and as @MillStone said, trying to stay positive and trust my body to heal.

I have a phone appointment with Occupational Health tomorrow with a view to a gradual return to work in the next couple of weeks. I'm very nervous about this but my mind feels sharper now and I hope that focusing on work a bit more will be a good thing, as long as stress levels are monitored carefully. I'm truly blessed to have a supportive manager.

I'm sorry you've had a rough day today @Criticallythinking and hope all goes well tomorrow.

Hi @fedupofbed Yoga is the way out of this . I hope your return to work will help the healing process too. I've been working part time for a few weeks now (computer work from home) and given I don't push it, it does bring back a sense of normality.

@TiddleTaddleTat good news on your ANA result.

Thank you @MillStone . I'm glad your work's going okay - yes, I think it will be good to take my mind off all things Covid and illness-related.

Hi, there was an interesting half hour thing on long covid on bbc radio, link here in case you are interested https://www.bbc.co.uk/programmes/m000mzms
Hope everyone doing ok and to those not feeling too good x

This is also very interesting - histamine intolerance and mast cell activation syndrome and long Covid m.youtube.com/watch?feature=youtu.be&v=fg29GTVj8yU

Thanks @emojoo I see mast cell activation is creeping in, it’s big in the CFS/ME world I hear. Have not read up on it as yet but meaning to.
I’ve always been a fan of the theories about mitochondrial malfunction (mitochondria are the “batteries” of cells, where they get their energy from, theory is if they’re faulty you’ve got CFS) I did read the other day that women have less mitochondria than men!
As we all know more women get Auto immune, CFS, lupus, long covid...

@fedupofbed glad to hear you are doing ok, and it sounds like you have avoided any significant relapses?
I do think work is helpful for me, as long as stress and workload can be well managed. I may be forced to take time off, but I would prefer not to if I don't need to. As long as I pace myself carefully and stay within my limits, I'm perfectly capable of working. My cognitive skills have improved a lot in the last 3 months and I'd say I'm back to normal in that department, I just have a shorter attention span and need breaks much more frequently.

Thank you @TiddleTaddleTat . I'm glad work's going okay for you and your cognitive skills are improving, that's great.

I feel it the next day or two if I if I've done too much/ slept badly but definitely no significant relapses. My baseline still feels quite low - I'm averaging about 3000 steps a day now (this is never planned it sort of happens naturally). But as ever I have to be more positive and less impatient!

I thought my mind was sharper but spent the whole of yesterday thinking it was Thursday so my occ health appointment is in fact tomorrow 🤣.

@fedupofbed that is really positive - 3000 steps sounds pretty active to me. I'm still nearer 2000 a day but then all the thinking and interacting for my work is taking up my remaining energy. On days I take more steps I tend to feel very tired by early afternoon and sometimes the next day. Still not up to increasing physical activity much while I am increasing mental. I am planning to speak with a specialist physio though to try and find ways of increasing strength while avoiding relapse. Just want to get through the next tranche of tests and examinations before I add in anything else.

That’s really interesting @emoojoo there’s a fair bit of talk on the forums about histamines etc..I was told to avoid drinking green tea when I’d been drinking loads as told it was good for inflammation 🤷🏻‍♀️Not sure what’s for the best.

Thanks so much @TiddleTaddleTat @Criticallythinking glad to hear test results are normal.
Still had a couple of oxygen dips to 93 yesterday and period not arrived yet but is due now.
Strange thing is, I woke with a really strange taste in my mouth this morning and has been coming and going all day. Difficult to describe-sort of metallic, it’s awful and I’ve not experienced that before, has anyone else and knows why it’s happening?
Really wasn’t expecting to have new symptoms at this stage. Chest very tight again today, deep inside, but otherwise ok.

@AndsLee and @fedupofbed got some of my results, my calcium is the highest it has been throughout this whole thing and everything else normal. Haven’t had results for c3 and c4 yet as these take longer. My heart echo was completely fine (went through report with GP). Obviously I was pleased but feel like I am edging closer to the mystery box... GP felt it was a good sign I am improving health wise.

@Whatnext2018 I had this exact thing on Tuesday along with all the emotion. Like you I was like WHAT NOW? Woke up Wed with raging sore throat and I have a sniffle. So might be that? I’m feeling ok really it’s better than a relapse

Should say high is good for my calcium!

@Whatnext2018 it sounds like you have been suffering one of the dreadful Pre-period relapses? The time I feel worst every month is the few days leading up to and first day or two of my period.
I suspect there's either something to do with autoimmunity - as immune system is affected by hormonal changes. In addition to this (or alternatively), it's to do with the HPA axis and involvement of the endocrine system. My adrenals are out of whack (low cortisol) and suspect oestrogen and related hormones are also involved due to the unusually irregular periods I've had lately.

@TiddleTaddleTat I’m guessing so 😩but didn’t expect new symptoms? Find this a bit worrying. Been feeling worse since last Tuesday on and off, so going on for ten days now.
Yeah in March and May (before I even know I had this) on the first day of my period were the worst symptoms I’ve ever had. Recently I’ve been experiencing the tight chest and aching all over in the lead up to it, but never had the weird taste thing.

Anyone know what happened to @godhelpusall and another username similar to mine..’What..something..I think! frazzled brain but wondering what happened to a few of the posters I haven’t seen in a while, recovered I hope 🤞

I am not enjoying the crazy energy. I fell asleep after 7am and was awake two hours later. I can’t nap. I feel kind of drunken tired if you know what I mean? I need sleep but can’t. Heart rate is on the up. Throat starting to hurt.

@Whatnext2018 were you under a lot of mental stress or doing more physically immediately preceding the relapse? Or had you seen a steady decline in the days/weeks prior? The last big relapse I had lasted a few weeks, I was doing more for the fortnight before but not massively more. That, plus arrival of my period, pushed me back to levels of recovery I'd seen months before.
Brand new symptoms might be worth running past your GP now?

@LetsBeSensible ugh that sounds crappy. Weird energy seems to be commonly reported on the FB group; like adrenaline rushes at completely inappropriate times...

@TiddleTaddleTat Not particularly I don’t think 🤷🏻‍♀️Although I spend every day rushing around after Dd, who seems to have ramped up the terrible two’s in the last couple of months.
I posted on one of the forums and the strange taste in the mouth is common apparently, I just didn’t have it before.
I’m not sure what the doctor would say to it, as I’ve not found much help so far 🙈