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

@TiddleTaddleTat That was quick! And It's really positive that you now have some answers and a path forward.

I'm confused because my GP told me I had a spike of 30 bpm (60ish to 90ish) however my letter from the consultant only says "no abnormal changes to blood pressure of pulse rate".

I've actually requested the raw data, which is PDF containing several pages of plot graphs -- I know because I saw it on my GP's screen. However I have a feeling they wont send it to me.

@MillStone as I understand it you are able to access the data as it's your data, they need to provide it when requested.
Interpreting it is another matter though!
As I understand , the PoTS test would be positive for PoTS if there is no drop in blood pressure and the 30pm increase happens within 10 mins and is sustained. It might be that yours spiked 30 over but didn't persist, or your blood pressure dropped alongside the increase in heart rate (I think!)
As an aside , I've heard anecdotally that the Sheffield PoTS service is quite reluctant to diagnose PoTS (understandably since it is a chronic illness ) whereas some others provide the diagnosis more readily.
My letter says probably pots, my heart rate went from 71 to 135 with no drop in blood pressure

@TiddleTaddleTat thanks for the explanation. I don’t expect to make much sense of the data but I had hoped i might be able to make sense of a few figures to see if they correlate with readings I get at home.

I read that many do recover from post viral pots!

@fedupofbed I am South East.

@MillStone that is good to know! They did say the same to me, and that considering I'd been bed bound a few months ago but was now able to sit for work etc was promising. Still, in the call she told me that for some people it can take up to 5 years... I think I'd already got to a place of acceptance in my symptoms as it's been almost 9 months and I'm only around 40% functioning where I was before covid

@TiddleTaddleTat I read within a couple of years, but who knows, it could easily be sooner.

I'm currently reading about hormone imbalance. I'm looking for answers because my heart is pounding so forcefully. Anyway... I found this thread:

forums.phoenixrising.me/threads/heart-beat-feeling-like-it-is-pounding-very-hard-feeling-and-hearing-each-beat.11058/page-10

On that page it gets interesting when Katoo1 posts about prolonged stress causing Cortisol to damage the brain and in turn effecting Testosterone, estrogen, progesterone and the thyroid.

These are all issues we are seeing. From the menopause to thyroid disfunction and, I believe your Cortisol levels were different? In my case my heart could be beating because my norepinephrine levels are now very high.

Several months ago I told my GP that I'd noticed that ibuprofen reduced it(!?) and I was told it's probably placebo. There's a study link on that thread that shows it dramatically reduces norepinephrine!

Sorry bit of a crazy tangent but I have been thinking this is hormonal for a while.

@MillStone yes I talked about this with the naturopath. Hormones, cortisol, histamine, they are all interrelated. I think the challenge of long covid is the multidisciplinary approach needed - not individual bodily systems when it is the whole picture that needs to be considered.

Thank you for the research and information @MillStone . Gosh it's all a bit of a rabbit hole isn't it? I had a quick read and very high dose omega 3 was mentioned which did seem to help me at first and I still take religiously. The ME CFS consultant I spoke with also recommended DHEA, which whilst not mentioned in your link, would seem to be linked to hormone production. I've not tried it though. I guess ibuprofen is cheaper and simpler?!

@TiddleTaddleTat I'm glad that your PoTS has been recognised, and great that the treatment you've been giving yourself has been working so well.

@Kitcat122 so you're in the SE too! Did your GP tell you about the clinic? Maybe I should ask again...

@fedupofbed I hope you’re feeling okay today. Thanks for the tip on DHEA. It is really is a rabbit hole isn’t it! It’s hard to know what’s probable and what helps (especially when so little of it makes sense ... and there are giant gaps in knowledge).

@TiddleTaddleTat would you mind DM me your naturopath’s details please?

@fedupofbed I spoke to my GP 2 weeks ago and she said she would refer me. She said it was new and I was the first person she had refered. The appointment came through yesterday.

@MillStone @fedupofbed I've emailed the naturopath asking about if it's ok I share her details. I'm sure it's fine but waiting for her to reply first, will DM you both if/when she gets back to me if that's OK?

@TiddleTaddleTat thank you, very kind

Thank you @TiddleTaddleTat much appreciated.

Wow @MillStone that’s interesting. I hate Very Beaty Heart, and it was a real issue for me when I first got ill. I had 72hr ECG and it was fine. Think this was when I was told I had stress I didn’t know I had.
At the point it was really bad was after I had to stop taking ibuprofen (was living on it, caused a bleed) around 2 years after I got ill.
I really should read more.

Really good news about the long Covid clinics being set up! Hope we can all benefit from them.

Respiratory dept have requested a bnp blood test which I was very worried about (heart failure). I've had it privately as I couldn't wait for the nhs and it was within normal limits. Still no closer to finding out why I can't take a deep breath/yawn/climb hills/walk fast but am leading a semblance of a normal life now. Still part time at work as I start to 'swell' after a few hours. Hoping the new long Covid clinics will have other tests. Still awaiting Coverscan project MRI results - probably another six weeks.

Hi Tootsey, I started the long Covid in March, and I think I discovered the livedo type patches May/June, they were there on and off in the summer. Not sure if/when they went, haven’t been looking too closely recently.

@Tootsey11 Sorry, forgot to tag you in the above.

It’s my 8 month covidversary and ai celebrated with a migraine!

Well, it’s certainly consistent, you have to give this virus that!
Hope you’re feeling better now.

How is everyone doing? I am going to get back to the GP again in case there is a long COVID referral they can make. Fed up of feeling crap, though I know others have it so much worse.

I had to take a day off today. Exhausted and also uncomfortable chest. No cough really but I feel like I want to cough something scratchy out of my windpipe.
In September I thought I was getting there. But in October the tiredness and the chest/windpipe reappeared and are on and off. I stopped even walking the dog.
I do wonder if it is doing too much and overdoing it at work. The advice is ti pace yourself but how you do that working full time?
On the other hand, I am scared it is reinfection. I work at a secondary school.
How is everyone? @Andslee, how are your throat/windpipe/chest issues?

@Moodgie

Hiya! Thanks for asking after me. Rubbish to read you feel like you are going backwards. I'm not sure how I am doing, to be honest...

I still have the odd occasion where I feel like I am "breathing through dust", but...this has lessened since starting antihistamines (with mast cell stabilizing properties). It's not gone, however, which is a wee bit disheartening. On the plus side, I am aware that the antihistamines are making me sleep well.

My skin has started to be a bit prickly again, and I am wondering if this is to do with my washing detergent? I am going to change it out and see...

Interesting about the livedo...I had this on my arms and hands. I think I still do occasionally.

I dunno... I'm managing to work full time. I just feel like there is something "not quite right" still. I am STILL awaiting an appointment with infectious diseases... God knows when that will happen.

Also, weird period this month. I wonder if that also has to do with the prickly skin?

@Qwertywerty3 - still have this "gut" (excuse the pun) that these weird breathing symptoms are digestive system related. I am so sure that the key to our problems lies in gut health. I even wonder if this is simply that there is still virus in our digestive tracts, causing reactions.