Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

If anyone is finding communicating their health needs to family and friends difficult, I've picked up a tip that might be useful.
I think I saw it on a website about managing ME/CFS.

Basically you take a jar of marbles/buttons etc and have say 10 marbles. Each one represents use of energy and your energy quota of 10 marbles is for the whole day.

I've just demonstrated to my 6 year old why I can't go to the park, draw, do gardening and speak with family today. If you count out a marble for getting dressed, one for tidying the kitchen, another for making lunch, etc. You're left with 3 marbles and have to choose what to do with them.

Might need to use this technique with DH next as he has struggled to really understand what's going on with me. To be fair he's probably just waiting for me to go back to how I was. I haven't been able to talk about possible long term effects yet as he's just dismissing it as he's worried too I guess.

Just adding the wet, slightly crusted eyes to the list of symptoms that is back over the past few days, one of a few different relapses after almost 3 months since first getting ill. Is wet crusty eyes a post-viral symptom too? I have to say (not a doctor!) that this feels to me much more like an continuous COVID infection that lies low for a bit then pops up again to take me out for a few days if I dare do too much normal activity.

I’m 3 weeks in and I thought i was over it. I’m getting a huge adrenaline rush in the evenings and I am unable to sleep. I’m up at 4am every night.
I felt good this morning so I went shopping and I feel destroyed again.

@wotnopasta you may have a bit of a long road ahead (hopefully not though). I can only suggest taking it really easy. Don’t make the mistake many of us did of starting exercising or doing heavy shopping. Pace yourself, drink a lot and rest as much as you can. I’ve seen advice not to do anything at all strenuous until you’ve been free of all symptoms for a month.

Thanks @egghead68. I’m usually very fit and I am just going to have to resist the urge to exercise.

Wotnopasta I second the no exercise even if you feel better. I made that mistake big time and it's put me back a month.

I have just ordered a FitBit because the points about keeping your heart rate below a certain level make sense to me.

I think my serious relapses were triggered by exercise as well - not that I did anything ridiculous but just walks up to half and hour my week eight relapse and cutting the grass on the side of a drive with a strimmer my week ten one. Things I would have managed no difficulty at all before.

Last week’s relapse was walking down to the doctor on Tuesday and then convening a work meeting online. That was the most obvious one.

So I am curious to see what everyday domestic stuff does to my HR and chest pain. I have had very little pain for the last twenty four hours or so but I have also done very little. Not a long term option with two DC and a job, hence buying the FitBit to see if it helps understand and manage what is going on - and inspired by Millstone wonderful graph.

Another long-hauler article (behind a paywall sorry):

www.thetimes.co.uk/edition/news/i-had-the-coronavirus-months-ago-but-im-still-too-ill-to-work-or-even-watch-tv-d6cc3vgtb

When Dan Scoble came down with the coronavirus in March, all the classic symptoms landed in one fell swoop. “I had everything under the sun: a fever, temperature, fatigue and chest pain,” he said. “My head felt like a balloon.”

The 22-year-old, a personal trainer from Oxford who normally breezed through 10-mile runs, suddenly found himself bed-bound. He presumed it would soon blow over, but 12 weeks after falling ill as the country went into lockdown, he is still not back to normal.

Scoble has left his house just five times in three months — twice to see his GP and three times to hospital. He still suffers from crippling fatigue, recurrent migraines and a persistent sore throat, as well as abdominal and musculoskeletal pain.

“My life has been stripped,” he said. “I have no power, no control, and I don’t know when I will recover.”

He is one of many Britons growing painfully familiar with the way the infection can linger for weeks and its after-effects drag on for months.

A good article about T cells / antibodies
www.telegraph.co.uk/health-fitness/body/no-antibodies-could-still-have-had-covid-fighting-t-cells/

Thanks for that link @Egghead68
I feel so down that we are still ill.

My gerd is awful at the moment. Anyone found anything that helps?

So I’d overdone it earlier in the week and was recovering from that. Well last night I lost my voice again and today I was so tired and shaky and my throat hurt so much. I’ve had two naps. I’ve lain down most of the day. I got sweaty and clammy but don’t have a temp. Am sure this is because period is due. I didn’t overdo it that much on Weds!!!

LetsBeSensible

I get flu symptoms before my period every single month, for 2 days, full on severe throat, aches, migraine, prickly skin & fatigue, & joint pain.

This has only happened since I had glandular fever, 4 years ago, then post viral chronic fatigue which finally went last August.

Now week 13 of Covid. I dread my periods, flu symptoms every single month, I have to go to bed.

Oh bugger, won’t let me read The Telegraph one without subscribing,

I really wish we had some positive breakthroughs to help us all recover or some idea of when/if

@Whatnext2018 if you go directly to the Telegraph homepage via Google and then scroll down to find the article, that might work. I think you can see a certain amount of articles for free before they try to make you subscribe

I think the Scotsman is due to do an article tomorrow

Thread in AIBU re; GP's fobbing long tail Covid patients off. I've added my tuppence worth...

Here’s a link to the thread @Lightsabre mentions in case anyone wants to read/post:

www.mumsnet.com/Talk/am_i_being_unreasonable/3938957-To-think-GPs-are-treating-Covid-patients-like-a-bad-60s-sitcom?watched=1&msgid=97467116#97467116

I have too.

www.manchestereveningnews.co.uk/news/greater-manchester-news/its-like-being-possessed-demon-18396486

Quite annoying that so many people still think it's just a type of pneumonia. I've tried pointing out the myriad symptoms that are associated with covid but people just want to think what they think.

Peoples misconceptions about long tail covid are incredibly annoying. They're also dismissive and silencing.
I was prescribed beta blockers by the GP, he said it was for the fast heartbeat on standing (I understand this is now called POTS and often a part of PVFS) but wondering if he was also doing it as part of an anxiety angle?
FWIW, they have helped as I am not as conscious of my pounding heart when standing and feel less ill overall.
I think there probably is a relationship with anxiety in that having these unexplained symptoms for so long (especially heart/chest issues) leads to anxiety, raising Adrenalin, making the situation worse; as some kind of vicious cycle.

Good morning
I thought I would come back in on my 3 month anniversary. Luckily I did not overdo the exercise in the early stages as my husband who had recovered from serious illnesses before made me and himself take it very easy, Now I feel ok not on completely top form but able to go about my day in general but still needing to pace myself. So I have worked from home 4 days and had 1 day in school teaching, completed all the housework ( realised if I plan it and spread it out I can cope) We have drunk alcohol, worked in the garden and husband has almost finished building a garden wall. I still have some chest pains and aches in my back under my shoulders when I have overdone it. Breathlessness is getting better but still there. Main problems are my joints aching , a dull ache all the time Today I have it at the tops of my arms. Sometimes it is my legs or my elbows or fingers.Oh and the cough that comes and goes. Really strange. As we are now allowed to join bubbles my youngest son has come home to help with all the jobs we have been finding so hard. We both still feel like we are 80 years old not in our 50's I have never been less active in my whole life but I do feel we are slowly improving. Wishing you all better days. I am starting to see light at the end of the summer.

I mean tunnel not summer

Wow, there’s a lack of sympathy (perhaps understanding?) from lots of people on the other thread on here.

Woke up with a tight chest and round my back, never had the cough etc but a tight chest near the very start, many moons ago.
My d-dimer came back normal (thank goodness) I literally went and got that test myself from a clinic, I feel like my time at the doctors is up after it was decided it was most likely anxiety and arthiritis in the neck..those two things causing all other symptoms..!
I’ve decided to just monitor myself, keep on top of oxygen levels and heart rate, test again in a month for d-dimer if legs continue to hurt/ache and see if anything can be done diet wise, foods to help inflammation and drinks with electrolytes I’ve heard.
I’ve also had ringing in my left ear since Friday, is anyone at a similar stage/having similar symptoms? Or know how long the tinnitus lasts? It’s really annoying,

@TiddleTaddleTat

I firmly believe I have PoTS along side / as per of PVF(S).

Several archetypal symptoms I have can be attributed to being post viral but 90% of them - of which are veeeery specific - are the exact symptoms of PoTS.

Conversely... I read certain blood tests - or test combinations - can indicate PoTS, but every test I have had has been fine.