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

Hi @Dimsummummy thanks for this info it does sound like lots of us have developed various intolerance. You said you have recovered, how long was it before you were able to work etc? At 6 months in I am losing hope!

@AndsLee your experience of peanut butter sounds scary!

@Criticallythinking bed ridden for a month, largely house ridden for a further 1.5-2 months and then a quick recovery. I’ve had spells of complete health (13 miles bike rides) but largely feel something is ‘off’ although I’m performing pretty much as per the virus life wise !

@Criticallythinking sorry that was ambiguous son to clarify by ‘off’ I mean

Pre covid - self employed cleaner 30+ hours a week, 10+ hours of travelling via walking or cycling and still 10+ hours work from home job and alll household tasks, drank wine nearly every night, smoked, ate like a sparrow but was really outwardly healthy and slim. Good skin etc had the energy of a kid. Mood pretty much always glass half full.,

Post covid, cleaning hours halved (most days couldn’t do more) therefore travel has halved too, barely drink (once a fortnight or so and it makes me feel pretty rotten) don’t smoke (have done on a few drinking occasions and usually makes me feel rotten ((or panicky about lungs)) day after, take vitamins, eat well and am knackered every night so rarely see after 11 ! Usually feel a bit down and/or anxious about why I’m still poorly if I’m having a really mucousy bad chest day and I now have terrible skin (huge spots on neck) and have put over a stone on so am overweight. Also have already had a cold that went to chest when pre covid had Never had a chest based illness. When working in slower (probably others ‘normal pace’ as I used to be energiser bunny levels !! Hth

Thanks Critically and Sensible
I hope everyone is seeing a bit of sun where they are today.

Bit late to the party but my insomnia tip is valerian tea. I’ll try out melatonin tho, thanks for the tip, because the valerian really does taste like a cup of old farts.
My tastebuds have recovered from COVID that much, at least!

@Dimsummummy I have decided to do a "Low Histamine Diet" for a month to see what happens. I definitely feel it's time to come off the Omeprazole, because not producing stomach acid will not be helping with the histamine levels. I've started to take a half a day just now (and will run it by my GP tomorrow), and when I run out go without. I have already noticed, 3 days into watching what I eat, that the "breathing through dust" sensation has lessened again since the Peanut Butter episode (thank you to everyone who gave me a shout out about this xxx). I have read a wee bit about Histamine Intolerance now, and wonder if the "breathing through dust" is a symptom of high histamine levels "doing a mimic" of asthma? I have been wondering about gluten also. I also tried to download the app Dr Tina Peers was talking about, PeopleWith, but wasn't able to find it, and when you click on the link to the app from her website it goes to some strange marketing site. That...was seriously discouraging...

So, to recap:
Usual Blood Count is fine, no Diabetes or Thyroid problems, D-Dimer clear, Iron Deficient and High Cholesterol, BP up slightly, ANA test negative, Covid Antibody negative, there were a rake of other autoimmune tests done, all negative, CH50 negative...

The symptoms I am experiencing I think seem like allergy - rashes, burning skin, wheezy (breathing through dust). I've never had allergies before so I'm not certain mind you. But what else could it be?

So I've just been fitted with an ECG to wear until 1pm tomorrow . I've removed my compression stockings and will try and stop doing the things that seem to help my heart... I know I'll cause myself a relapse if I overdo it on the activity but also want a realistic representation of any issues that I have... feel I'm heading towards a relapse anyway due to stressful and busy few days at work and home

@Dimsummummy I have been diagnosed with under active thyroid after Covid. Also had a cold a few weeks ago that went straight to my chest. I expected to have a weak chest this winter especially as it's still not 100%. I don't really have breathlessness anymore but it still hurts sometimes especially in the cold. I'm hoping it's just a temporary thing this winter.

Does anyone still have the sore chest inside?? Like almost anything I do feels like I’ve over exerted (sp) myself? It’s always there, sore in the chest and at the same point but in my back..how can it be like this for 7 months 🤷🏻‍♀️🤷🏻‍♀️

@Whatnext2018 i have the sore chest too, and same as you it's mirrored in my back. I do wonder if it's gastro related...no idea really. I've been badly fatigued last week too - kids have had colds that I don't appear to have picked up, but perhaps the fatigue is a sign. But fed up of trying to be patient!!

@givemeanother losing patience...I hear you sista!

Sorry for stepping in as a non-sufferer. Over on the data thread I posted some links about long covid and a concern that people might misinterpret their symptoms if they have new onset diabetes. So I thought it best to find those who might be affected in case any of you are unaware. Please be aware of diabetes symptoms (thirsty, tired, losing weight, cuts take a long time to heal, blurred vision) and speak to your GP for a test if you have any concerns. You mind be interested in the other links too.

My original post:
Largely a plea for more high quality research to be done, but this article has interesting links to a range of articles examining long covid; the careful separation of the different types of issues was interesting: post-viral chronic fatigue, prolonged and relapsing course of illness, persistent symptoms, cardiovascular issues from MRI scans, PTSD, pulmonary issues and exercise capacity, new onset diabetes, mental health:www.thelancet.com/journals/laninf/article/PIIS1473-3099(20)30701-5/fulltext.

Cardiovascular and pulmonary issues are fairly well known but the impact needs a lot more assessment, new onset diabetes is one I hadn't heard of (and I wonder how many long covid suffers are putting the fatigue down as persistent symptoms rather than recognising diabetes). PTSD is common from any ICU experience and chronic fatigue from any severe illness. It's an interesting distinction between prolonged/relapsing covid versus persistent symptoms, unclear how anyone would know the difference right now.

My cold has led to another relapse. I’m feeling pretty despondent given it’s only week 2 of attempted return to work. GP is supportive but we are running out of things to do. My c4 was low again but only just below the threshold so I doubt the rheumatologist will do anything about it, I am not due to see her for months.
Doesn’t really feel like an end is in sight at the moment-the good days are so few compared to the bad ones.
Great news about long Covid clinics from NHS England but realistically these are going to take a long time to set up.

@AndsLee good luck with the diet- keep us posted

everyone feeling the effects still/ all over again.

For people in England only: I saw this announcement from NHS England, not sure if there’s anything new we didn’t know here? www.england.nhs.uk/2020/10/nhs-to-offer-long-covid-help/

People suffering ‘long covid’ symptoms will be offered specialist help at clinics across England, the head of the NHS announced today.

It’s dated 7 October as a new announcement. The three part assessment bit I think I had not heard of previously and that sounds good. I’ve given up contacting the GP every time I relapse as they have nothing they can do but I will ask for a referral in future.

Thanks MRex for the information about diabetes. Another thing to watch out for, but better to be prepared.

I’m starting to feel this is just now part of life..waking up with sneezing and stuffed nose every single day, funny tummy, expecting aches and pains, burning in hands/arms and chest pain when even singing. Followed by periods when the stranger symptoms may briefly return-internal vibrating, beating in chest, anxiety etc.
There’s been huge change from when at its worst May/June..but not much change from
say August when it eases off a lot..it just feels ‘Stuck’ at the moment..zero improvement, anyone else?

@Fishflakes thanks for the link, I am glad to see this is being rolled out. Baffled by why they would be doing a cognitive assessment (how would they know what to compare the results to since people weren't tested prior to becoming ill). Still, it's an attempt.

Would be good if they were more explicit about the basic tests that will be offered - hope it will be in line with the BMJ Greenhaigh (sp?) paper recommendations. This should include some investigations beyond the most basic blood tests which often don't show anything, not because there is nothing wrong, but because they aren't the right tests.

@givemeanother Sorry you’re feeling it too, thanks for your response. In what what can it be gastro related? (Being a bit thick here!)

@Criticallythinking Sorry you’re still feeling crappy, I’m also feeling down with it all, it feels never ending, doesn’t it. I had some positivity not long ago, but I’m not sure I can feel any actual improvement for a long time? I just don’t understand how it can last this long, burning in arms and hands this morning, wish we knew what caused it to return or what we could do about it..feels pretty hopeless at present,

@Whatnext2018 when my chest pain is worst I'm often quite belchy too. Pain in the sternum going through to the back can be acid reflux or gallbladder. Like @AndsLee I was on omeprazole for a while but it didn't stop my pain getting really bad in June and seemed to give me IBS so I stopped it. I also had an endoscopy which was completely clear when off any meds...even though I still have some pain then.

I went through a period of taking gaviscon after every meal and it seemed to help...but that could have just been time. Now I try take gaviscon only after dinner...I'd stopped doing that last week and the pain got worse...am taking it again and it's a bit better. Who knows!!

I spoke to a respiratory consultant on Wednesday (referred via my a&e visit in early August for sob). It was via telephone so not particuarly informative but he's referred me for a scan (I presume CT) and lung function tests. I'm beginning to wonder if cardio tests would also be a good idea - ECG in a&e has been clear...but I do think my heart rate gets too high doing simple tasks. I've given up measuring it as it didn't help with anxiety!!

@givemeanother Ahh ok, I didn’t connect the two 🤔 I’m not sure..mine seems to be if I raise my voice, sing, feel anxiety etc..🤷🏻‍♀️Can also be aching in my neck/all down my back and legs.

Anyone know the reason for the burning? Wondering why that goes and just turns up out of nowhere.

HI all,

Feeling more human today after taking a big dive last Saturday. It's been a week of debilitating fatigue, SOB, forceful heartbeat, aching back, calfs, tinnitus, ear ache and mood. Still no tilt results either, despite trying. Still, I feel stronger and brighter today so definitely moving away from the setback.

Not really sure what the NHS will / can do for us at these new clinics (except reiterate the 3 Ps...) until they know what the problem is. And as @TiddleTaddleTat said (good luck with the 24 ECG BTW) they only seem to be performing basic testing -- in my experience to look for heart / lung damage and auto immune disorders.

@fedupofbed hope your return to work is going okay.

@MillStone sorry to hear you have had a crappy relapse week and you're still waiting on tilt table results. My relapse symptoms are pretty much identical to yours. Out of interest are you under Dr West in cardiology? According to pots U.K. he is a specialist in the area (and only one local to Sheff) so I'm glad he is overseeing me on the cardiology side. My tilt table is booked for 4th Nov.

I'm having a weird day so far, trying to get my heart to act up by doing the things I've outlawed for several months - gardening, standing , moving around a lot, strong cup of tea, no electrolytes and drinking less water...

@TiddleTaddleTat I'm not in Cardiology. I was sent for the tilt and CPET by a respiratory Dr and my breathing, heart tests and Lung scans by Infectious Diseases.

I wish I had a cardiology Dr to question because despite my ECGs and echo being okay (only note was bradycardia @ 38bpm ) I have been advised everything is working well.

Plot twist... It's not. it's thumping day and night like a drum and when it really thumps i've come to learn that it indicates an imminent relapse.

I hope your day of testing yourself is going okay. Doing all of that must be anxiety provoking.

@MillStone we'll see if I get a chance to ask cardiology questions ...suspect if all comes back ok I'll be led on the cfs clinic which the respiratory dr indicated was end of the line, basically.
I also get thumping heart as a sign a relapse is coming. Honestly I feel like patient experience needs to be the basis of understanding what is going on in this disease. I get frustrated with the top down approach that minimises what it is like to live with this day in and out for months with such uncertainty.

Hi everyone. I'm not posting as much as I was but have still been reading and thinking of you all.

Oh @MillStone so sorry, that sounds like a hideous relapse. Glad you're feeling stronger today and hope you're through it now. Thanks for asking after me. I start work properly next week, but have done a few bits this week, and all gone okay so far. I think my big challenge will be keeping strictly to my hours (only 2 hours twice a week to start) rather than sliding back into bad habits and checking emails at all hours of the day.

My pattern of illness seems quite different to many of you at the moment. My baseline is still low but I am very gradually improving without any big relapses (or is that famous last words?!). I'm now 3-4000 steps a day and drove yesterday for the first time since February. It was just a few minutes down a residential road to a friend's for a cup of tea but it just felt so wonderfully normal! My main symptoms are extreme fatigue and sleep issues. Breathing and heart rate still aren't as they should be but going in the right direction. Then I have a multitude of the smaller odder symptoms like big veins, funny headaches, red fingertips, etc.

@TiddleTaddleTat I'm glad your heart is being monitored but really hope you don't overdo it with all that extra exertion.

@MRex thank you so much for taking the time to post your information here. I think I did get my blood sugar levels tested at some point! Much more research is needed, but there now at least is recognition of long Covid as a condition and I seem to read or hear something about it in the news so often now. Remember all those horrific early days when we so ill and being fobbed off with anxiety diagnoses!