Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

Jeremy Vine radio 2 will be discussing long tail Covid today...Hopefully I haven't missed it...

Jeremy Vine will be talking to a long hauler after the news on Radio 2.

Hi @Norugratsatall nice to hear back from you but also not nice for you sorry! That must be crushingly disappointing after 8 good days. It does seem that too much exertion exacerbates it all again. I really you're through this relapse soon. Just listening to Jeremy Vine, not been featured yet but he's mentioned it....

I've been trying to keep a diary but it's a bit patchy as I always forget when I'm really ill. These threads are probably my best log!

@Norugratsatall Just saw you posting the same thing!

Just called in... it rang and rang but nobody picked up! 🤔

@fedupofbed thank you. Sorry to see you're still here too.... 💐

Hi everyone, sorry to hear of the setbacks and ongoing slog.
Thanks to the PP who recommended a heart rate monitor / Fitbit. I've been reading up on CFS/ME having googled info on pacing and post - exertional malaise.
Common to this is also something called POTS - essentially a big increase in heart rate when standing or sitting. It can prevent people from being active, leading to further fatigue.
There's some interesting stuff about finding what's known as an 'energy envelope' ie keeping your heart rate under a certain level (basically about 50/60% of a healthy person's maximum). Going over this triggers fatigue/relapse.
The aim is to gradually increase the energy envelope without crashing and having a relapse.
It's something to do with individual cells' available energy. When your HR goes over the maximum, you must 'borrow' oxygen from other cells. Sorry as you can tell I'm not medical! May need correcting!
Anyway having used a HRM for a couple of days it's been eye opening, basic household tasks are taking me over my maximum HR. I think I understand more about the relapses I have had now.
I've also discovered that available energy can also be used up with strong emotions, sensory input, among other things.
Oh and rest is lying down with eyes closed. Anything else is not rest!
I'm hopeful I can get on top of this and avoid another relapse.

Afternoon. Day 79/80. Feeling fine but my resting heart rate is still around 100 (normal for me is 65-70ish). I’m another one who expects to still be on the thread for my centenary!

Hope everyone is as OK as they can be.

@Meercatmama That’s interesting about the sinuses, it’s a big issue of mine, I take anti histamines as also have hay fever but doesn’t seem to make a massive difference.
Get my results of bloods and Ct head scan and neck x ray hopefully later today, v nervous indeed.

@TiddleTaddleTat thank you for posting about the energy envelope. I’ve been trying to keep my heart rate to a maximum of 110 but as my approximate healthy max is 220-51=169 and 50-60% of this is roughly 85-101 maybe I should be aiming for lower.

Hi everyone, thanks for the good wishes. I registered online this morning, so now to attempt to book in for getting the blood test and covid antibody test done. Fingers x .I have been fed some home made Victoria sponge so am very much enjoying being looked after.
Can’t remember who was talking about energy envelope and heart rate but that stuff is ideal for those of you who have never had post viral fatigue.
Did anyone listen to the Jeremy Vine feature? If so could you summarise it for me as I have missed it!

@LetsBeSensible tbh I felt it was a bit of wet squib! There was obvs not enough time for a proper discussion and they didn't talk about anything that I haven't already picked up either on here or on slack. The only thing Dr Sarah did mention that one in 7 people suspected of having had Covid were likely to have a false antibody test. Whether this was because they hadn't made enough antibodies to detect she didn't say - unless I've misunderstood? That's quite a high %!!

Sorry not 'false' but 'negative' (brain fog!! )

@fedupofbed I will keep you updated on the anxiety meds. My GP figured if we could curb the anxiety a bit my body might find it easier to heal. And I’m at the point where I will take anything.
I’ve started chopping up my proprananol tablets and 5mg seems to keep my heart at 65 - 100 for several hours at a time.

Ha yes, I have brain fog too! The person they interviewed on Jeremy Vine was Simon Hattenstone who wrote the piece on Saturday's Guardian.

www.theguardian.com/world/2020/jun/06/ive-been-ill-for-months-but-i-still-dont-know-if-it-is-covid-19

You could tell he was still struggling. The whole thing was too brief to have a lot of info, but more coverage so definitely good. I picked up on the antibody test info too. The Abbott and Roche tests are 99% effective in picking up antibodies but Dr Sarah Jarvis said that it's estimated 1 in 7 people who have covid don't produce antibodies. I think that's right?!

@fedupofbed yes that was it! I thought that was quite a high percentage actually.... basically more chance of NOT producing antibodies for Covid than of contracting bloody long tail Covid in the first place...... oh the irony!

@TiddleTaddleTat that is really interesting and coincidentally I've just read an excellent post about this on a Facebook group.

It's written by a GP who is currently supporting covid patients but has lived with ME for years. She says that many of our symptoms, including the more outlandish ones such as neurological issues, high pulse rate, cold extremities, etc, are experienced by ME patients particularly during post exertional malaise. She said exactly the same about rest and keeping heart rate below 60% of your maximum. Your maximum heart rate can be calculated by your age - subtract your age by 220.

@fedupofbed @Egghead68 no probs

I found one website that suggests a different calculation for women:

Maximum Heart Rate = 206 - 88% of Age
[206 – (50 x .88 )] x 50% = 81

[206 – (50 x .88 )] x 60% = 97

Web page is at http://cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope

Thank you!

Hi all....glad I’m not the only one with a sore breast bone. It aches. I called GP today hoping to get some useful advice as I shouldn’t take ibuprofen due to asthma. She just freaked me out by talking about enlarged hearts...but then said she didn’t think that’s what I had. But now, rather irrationally, I’m panicking. Which is making my chest hurt.

Got sick end of March. Been slowly getting better but feel now knocked back. I wonder if its anxiety/fear. Gah.

Thanks @TiddleTaddleTat for that calculation. My resting heart rate has been around 80-85 so I think that's ok for a 53 year old (maths not my strong point!). It does go up to a 100 on any kind of activity which is annoying.

In week 11 now. GP sending me for a chest X-ray and bloods. I expect these to be clear as they were five weeks ago but my back and throat pain is worse and my SOB hasn't improved much. He said if the results were clear then they'll consider referring me for pulmonary and throat investigations but I'm not holding my breath. He is tacking on a venal antibody blood test. Will update when I get the results in a week.

@Norugratsatall, I've also been logging my symptoms, heart rate, meds, blood pressure etc as I'm bored and I want to look back and see if there's any improvement. I've only been doing it for three weeks though.

@Rosesofeyam, thanks for the info on steroids and glad they helped.

I do have some good news today. I have a date for my chest X-ray now, it will be this Friday at 13:50. So it's finally happening, which is encouraging with these symptoms having gone on for over 3 months now.

I think my symptoms could be thyroid. Has anyone had tyroid included in their blood tests?
Something called sub acute thyroiditis.

I haven’t posted for ages as I’m pretty much fine, just not quite ready to run as my lungs still feel a little burn-y when exercising. We all seem to have caught another cold at the moment, sore throats and sniffly noses.

I was curious as to whether anyone has developed longer term gastric symptoms, specifically food intolerances. My OH had mild lactose intolerance but since the virus has had to give up milk altogether.

@Keepdistance yes thyroid included in my blood tests, I think it's pretty routine when fatigue is an issue of concern.