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

www.nytimes.com/2020/10/27/health/covid-antibodies-autoimmunity.html?fbclid=IwAR32gedTPFxgls0BEaMoN5gN_2aKKgnTQ6gZYTVEcFeDGac-KmtIYUY1NTI

Well, I now feel positive about the runny nose/cold I have got! Thank you.

Also wanted to thank everyone who was posting about low histamine eating earlier in the thread. I‘ve had a torso rash recently which is still present (unusual for me) and it definitely has been exacerbated and more bothersome by eating the things on the list (tomato and other vine veg, pickled stuff) and seems less bad when I don’t have those. Could be placebo effect but these days I’ll take any decrease in symptoms happily. Interesting about all the different autoimmune theories too. Thanks everyone. Strength to everyone still struggling with their health.

Yes Tootsey, I’ve had pricking nerves particularly toes and fingers like pins and needles and less frequent but very jabby random torso pains since March.
On and off but more on. Also tinnitus, they seem to come together.

Docs have recommended vit D and vit C but no other approaches.

@LetsBeSensible oops, sorry! It was in this article that I read apparently people with me/cfs didn't get colds https://www.mesupport.co.uk/articles-index/related-conditions/stress-fatigue#restoringyourr_health
My naturopath simply said that getting a cold was a good sign ... maybe it's more to do with autoimmunity? I don't know. Either way it felt kind of nice in a normal sort of way. Sounds weird I know. Also it did not cause me a relapse, lasted several days and cleared up.

Thanks for the article on autoimmunity. I wonder if this is something showing up in blood tests? I know that some can have elevated igA (or is it igE)? But mine have always come back normal in those tests, while other areas are out of whack.

Wonder if an ANA test would screen for this ... or does an ANA only test for known / specific auto-immune issues?

A lot of people here have had negative ANA tests -- mine was.

@TiddleTaddleTat sorry but I think that’s a load of bobbins! I fall ill with a cold or flu every year around Xmas/new year. People ask me if I’ve got ill yet every December.

@LetsBeSensible haha!! Right you are. It did seem a bit perplexing...

@MillStone I wondered the same. My ANA was negative too.

Spoke to my doctor today about another issue and mentioned I was still unable to exercise yet and she has refered me to a Covid clinic so I will keep you all posted.

I was due my CFS appointment at the start of this week. I never received a call from the consultant. After half an hour I called and emailed. Apparently he was working and I was “on the list” but...nothing. Still chasing for an answer.

The morning anxiety is the worst! Did anyone say they were peri menopausal? I'm due my period and the anxiety is sky high

How has everyone with young children found half term? I felt I was managing mostly okay, but a week of the children at home everyday has sent me into relapse. The chest pain is back with a vengeance and all across my back and neck too. Trying not to feel too miserable but struggling...when will this be over?

I also have a referral to a post-covid clinic - I think Guys and St Thomas's in London. That was made a couple of months ago and all I've had is an e-letter saying they are very busy and due to the pandemic it's likely to be quite a wait. Very frustrating.

I won't hold my breath then 🙄

@Kitcat122 hopefully it's better in which ever part of the country you are. Fingers crossed! Guys and St Thomas isn't even my local hospital - that would be Lewisham or Kings College. Perhaps I need to call the GP to see if there are other options...

@givemeanother not easy! Plus I have been trying to work from home while looking after DD (only on one or two days but neither were very productive as you might imagine). In tier 3 here - even if I was able to take her out and about - we've been stuck in due to weather as well.

I'm starting to feel a bit concerned about attending the two outpatient appointments at my local hospital next week due to the spread of COVID in the area (tier 3).
It would be mad to cancel the tilt table and endocrine tests, wouldn't it?
Just feeling really fearful of catching COVID again. I hear that the spread in hospitals is quite significant at the moment

I had to go to A&E last night (broken wrist). There was no hand gel, no temperature checks, tens of people in the waiting room, some of them coughing, staff wandering around without masks, also coughing, and a nurse actually sang around 3 inches from my face as she did my plastering.
It all felt completely unsafe. Maybe other hospitals are better though.

@Egghead68 that's terrifying. I was about to say that I thought the risk was mainly from being an inpatient, but you've clearly seen otherwise.

@TiddleTaddleTat I wouldn't cancel your appointments, they're important. And I'm sure in general good preventative measures are being taken. I also like to believe we've got some immunity (even if my antibody test was damn negative).

@Egghead68 and sorry to hear about your broken wrist. Last thing you need - hope it's a quick recovery.

Thanks @givemeanother. Wish you well too.

Sorry to hear about your injury @Egghead68 and that hospital infection control seemed poor, where shouts are you? Hope your wrist is feeling ok
@givemeanother yes you're right, I will go to the appointments , just feeling a bit nervous I suppose

Got news back from the 24h ecg, no serious abnormal rhythms but quite a few extra beats which are apparently very common and generally not concerning

@TiddleTaddleTat great news on the 24hr monitor results. Take all the small victories we can 😀

I’m in London near a hospital that should know better. Hopefully we’ve got some immunity. Great news on your 24-hour ECG @TiddleTaddleTat. I had a few extra beats on mine too which they said was fine.

That is good news @TiddleTaddleTat . One less thing to worry about.

@Egghead68 sorry to hear about your wrist, and what you describe at the hospital is shocking.

@LetsBeSensible did you get your ME CFS appointment in the end? So frustrating for you. I have my first video consultation with my local service on Monday, though not sure if it's right for me... I'll see what they say.

I've not had the best of weeks with this wretched cold. I've felt a lot better in myself today 🙌🏻 though I can't relax until my breathing's better again. I'm back to doing those Queen's Hospital exercises as my lungs feel all congested. I feel like it's too big a coincidence that my period arrived today... first one in 10 weeks, and worst relapse so far in the run up to it.

@Egghead68 sorry to hear your troubles.
@fedupofbed I didn’t get my appointment. I kept up the calling and emailing and after a few days I got a response that I’d been discharged!
I could cry. I contacted the GP and found out I’ve been marked as inactive and taken off their register. I’m in a dystopian nightmare. Am trying to undo the deregistration with the GP in order to get re-referred to CFS....yeah.