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

I just discovered that my tilt results have been with my GP practice for 3 weeks 🙈

The result was no abnormalities to heart rate or blood pressure.

The only other notes were the records of me informing the clinicians of heart palpitations.

That’s relieving ... but so confusing.

@MillStone good news! Shame it took so long to find out!

I've just heard results of endocrine tests and I don't have adrenal insufficiency which is a relief. I didn't think I did but as it's a serious condition I'm glad it's been ruled out.

@MillStone that's great! But, yes also very confusing (and frustrating that they were with your GP for 3 weeks).

Unfortunately I'm still struggling here, 3 weeks after I caught a cold. I still feel breathless, ill and my fatigue is now a lot worse too. It's all got too much this last week as I'm in so much discomfort and I'm so sad and worried that this is my life now. Sorry, hope you don't mind me venting on here. Hopefully I'll improve a bit over the next few days, and try and regain some hope and positivity.

I'm starting a whole new bunch of meds this week - HRT, loratidine and hydroxychloroquine. Hopefully something will help. The latter was suggested by my rheumatologist and I should have started it ages ago (it may help if my symptoms are caused by an autoimmune illness triggered by Covid as opposed to if they are Long Covid symptoms if that makes sense! My ANA test was weak positive).

And @TiddleTaddleTat glad your results were clear too. I hope you're feeling a bit better after your recent hospital appointments.

@TiddleTaddleTat thanks, good news on yours too! Must be a big relief.

I’ve pushed my luck over the past few days and today I’m totally empty and feel awful — a reminder to slow down and pace more.

Hope everyone’s feeling okay.

@fedupofbed sorry cross post. I’m so sorry you’ve been struggling. The energy it takes to keep fighting is exhausting and soul destroying at times.

We will recover. People already are and everyone is making progress.

I hope your new meds will help

Thank you @MillStone . I try so hard to stay positive but sometimes it feels too overwhelming. There was a song on the radio yesterday that I was dancing to last year at a music festival. I couldn't stop crying - sadness that my life has changed so much but also it was such an uplifting song and gave me such joyful memories (for which I'm blessed). I'm just a bit all over the place.

But you're right. We will get there 💪. I'm sorry you're feeling awful too today and hope you get a chance to rest and recover 💐.

@fedupofbed Yes it's surreal and hard to believe how much life has changed and for how long.

I'm surrounded by bicycles and running shoes and the sight of them is so saddening.

Crying helps though doesn't it. So does talking about it. So offload away!

I'm really sorry to hear about your relapse @fedupofbed and the impact it's having on your mood.
Have you watched the RICOVR videos recently? I think the one on psychological impact of illness is really helpful and I've watched it several times. Can try and dig out the link if helpful...

I can't recommend enough finding a naturopath or alternative practitioner that can guide you through the journey of illness. I find my naturopath very reassuring, unflappable. She's experienced in understanding the intersection of illness, gut immunity , emotions, stress, preexisting sensitivities or vulnerabilities. It's been really helpful.

Thank you for your kindness @MillStone and @TiddleTaddleTat .

I just dug out the RICOVR video and had another look. It was very helpful. It also brought home how much additional 'work' there is in managing your illness - trying to get the correct care, organising medical appointments, learning everything there is to learn about the condition, delegating responsibilities, managing others' expectations, etc. It's just all hard slog.

I've been regularly seeing an acupuncturist/TCM practitioner and chiropractor who've both been invaluable in the support they've given me, especially when no other support was available. Progress is so slow though. Do you see your naturopath in person or online? And do you feel like the supplements she's recommended have helped?

It's been ages since I posted on this thread but check in quite regularly. I just read your last post @fedupofbed and what you say about the work to manage your illness puts exactly into words what I have been feeling the last few weeks. I barely leave the house except for medical appointments/tests but all the phone calls, working with my DH's work diary so I get appointments when he can take me and that don't clash with school drop off/pick up, writing notes of my symptoms or questions, fasting for tests or following whatever other instructions etc it's all so exhausting that I literally have nothing left to actually do anything else other than the occasional pile of laundry. I want to go out for a short walk when the sun shines or pick my kids up. But I can't if I have been to the docs or gave to conserve energy for an appointment the next day. So frustrating. I do feel like I have a little more energy some days which I am quietly optimistic about. But I still feel the weight/strain on my chest after doing anything and I still can't sleep well. I still get the very occasional tiny dry cough and feel out of breath after very little exertion. I am no clearer how much these things are just a feature of fatigue or whether they are still symptoms in themselves. I also still get the occasional raised temperature (usually just under or at 38) plus acid reflux, slight tremor/weakness in right arm/both hands. I still get headaches often, have trouble with my eyes focussing etc. But I think most of these things are less strong or less often. Sorry for those going through yet another relapse/worsening of symptoms. I hope we are all making progress, however slow! I am awaiting results of an MRI and pondering the Doc's offer of a full body PET scan to figure out the source of recurrent temperature (subject to insurance being willing to cover it). I could never have imagined how much of my time/ energy this illness would take up!
Best wishes to you all and thanks for listening to my rant!

I'm with you all. We've all been ill soooo long now it's so hard to keep positive. I am feeling much better but lungs still not great. Thyroid underactive since Covid and went to the nurse last week and blood pressure was very high. Always had really good BP. Not sure if it's Covid related but feeling very depressed that I used to be so fit and healthy.

@seriouslynonames @fedupofbed totally agree , it is a full time job managing this. I am also spending hours preparing for appointments or chasing things up, noting symptoms, ordering supplements, doing physio exercises, taking the tests, preparing food from scratch and snacking every couple of hours...it's draining in itself

@seriouslynonames interesting you mention the regular temperatures. I hadn't noticed this myself but the other day at hospital they took my temp and was 37.5, the nurse said any higher and I wouldn't have been allowed into the appointment. I realised my thermometer always records my temp as about35.5... needless to say I've ordered a new one

@fedupofbed yes the supplements have definitely helped. As I understand it the basis of naturopathy is to start with gut health, as the foundation of health and immunity. The supplement regime has been tweaked now to include substances to mitigate likely mast cell activation and also an issue I seem to have with my liver. It was really interesting having hear explain to me how hormones, cortisol, and histamine all have a relationship in this and since the liver is a major organ that processes a lot of these substances it is why I have abnormal liver results. I see her online - maybe I could recommend you her details if interested?

Sorry don't know why that all came up bold!

@TiddleTaddleTat I think it comes up bold if you tag someone twice (I've done it a few times!). Yes please, that would be great if I could have your naturopath details - she sounds fantastic.

@seriouslynonames our lives sound similar - laundry is about all I do at the moment too. Please do rant, especially after my outburst today. I'm sorry you still have so many symptoms, but let's hope they continue to be less strong and less often. I also often have a raised temperature and was nearly sent away from one appointment (I had to sit and drink 3 glasses of cold water then my temperature went down enough to be allowed in!).

Love and strength to you too @Kitcat122 . I guess we just have to focus on the improvements, however small.

Oh and last rant of the night - I've put on a stone and a half in weight and none of my clothes fit me 🤬. Tomorrow is a new day and I will be brimming with positivity again!

Sorry to hear of those having a bad time.
I was a bit brighter today. I went outside to do the bins. First time out in a week!!!!

Hi all,
Not posted for a while, glad to see lots making improvements, sorry to those experiencing problems. So for the past month maybe on and off, I’ve felt like I’m going backwards. Just over 8 months here and feel I was doing better in August/September in lots of ways.
I’ve had over two weeks of the strange sleeping/not sleeping thing, which seems to have calmed the last few days and I felt I’ve actually slept, which is good.
Today I woke up with strange feeling in back of neck and head, like fizzing, difficult to explain accompanied by the sore gums, sinus feeling and just so dizzy, almost a swaying feeling in whole body.
Oddly, I also have a swollen toe, I sometimes have an odd shooting pain in the toe but didn’t realise it was swollen until yesterday.
I’m still taking anti histamine, magnesium, turmeric, Vit D, C, zinc, iron, B3 etc etc. I can’t see this ever ending and I’m not sure I’m actually really making any progress? Not sure what else I can do. Sorry to be so negative, is anyone else feeling like this?
I’m sat here with my toddler running riot around the house, it’s just so hard.

I’ve also had a racing mind and really high anxiety the last couple of weeks, but not sure if that made me feel worse or the illness is causing this 🤷🏻‍♀️

@fedupofbed I too have put on over a stone very depressing.

Whatnext I’m really sorry things are so tough and I hope you start to feel better soon.

Came across this www.healthrising.org/blog/2020/10/10/ras-bradykinin-covid-19-chronic-fatigue-syndrome/
Not an easy read but interesting re. The bradykinin hypothesis in covid and its links with MCAS

@TiddleTaddleTat

Curiouser and Curiouser...

Thank you @Fishflakes it’s just like a reinfection feeling over and over again...

Sorry to hear it WhatNext. It’s very grim isn’t it to recognise the same symptoms recurring. Good luck with it.