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

Turmeric curcumin tablets finally arrived today, it’s the one supplement I think u haven’t tried. It says high strength 1380 mg per serving, but to take two per day, does that seem excessive? I’ll start with one for a few day’s and hoping to see some improvement 🤞

@Whatnext2018 my turmeric is 1800mg per serving and packet indicates serving size is 3 capsules, so probably same strength as yours. I found it helpful.

Thanks TiddleTaddleTat

Was it this one by Trisha Greenhalgh, Management of post-acute covid-19 in primary care
www.bmj.com/content/370/bmj.m3026

Thanks for the tip I will check it out.

@Fishflakes yes that's the one. Useful for sharing with GPs that are dismissive about things.

@fedupofbed thank you. Time will tell if and how long I relapse for following the significant increase in my exertion while wearing the ecg monitor . I've handed it back now so resting for the afternoon and evening in the hope that it'll help curb any damage.
You mentioned before about poor sleep following days of additional exertion. I absolutely have this pattern too. Have had a week of better sleep which I attribute entirely to improving sleep hygiene and restricting time spent in bed . I was recommended the attached book by a GP for insomnia, I was sceptical but it is helping, in the main. However I had a really stressful and busy day with work yesterday and despite doing everything the same in preparing for bed, going to bed at the same time etc, I still woke twice in the night with a racing heart , wide awake.
Of course it's then a vicious cycle with fatigue from preceding day plus impact of poor sleep. I suspect that the author of this book would encourage someone with this pattern not to try and make up the exhaustion with naps etc, as the body is likely to try and recoup the additional rest in deeper sleep the night afterwards, if that makes sense

Thanks @TiddleTaddleTat , yes it's exactly that pattern for me. I'm currently having a dip right now after a great few days. I've done the wrong thing though and gone to bed! I'm not quite so fed up of it at the moment 😁. I'll look up that book and try and work on my sleep hygiene. I hope you've had a good rest this afternoon.

@fedupofbed agh, hope your dip is short lived.
Yep I can feel it coming on... aching muscles in my legs, feel drained, more ear fizzing and ear ache is back. Will try and put things in place so I can do as little as possible tomorrow

Hi all
Just dropping in but I have been catching up by reading what you have been experiencing. Glad to see that you are improving if only slowly and your frustration I can understand. Finally we are being recognised as long term sufferers, i hope you all continue to improve and get the help required to returned to your normal lives
So the update. Week 5 in school working full time. It is exhausting and I know most teachers say this but I have never experienced such tiredness. Various minor ailments cold, sinus, odd parts of my body aching such as my ring finger that I can not bend at all as it hurts so much. I am going through the motions of doing my job and have been described as so very quiet and not your normal bouncy self. Everything is a struggle from the moment from when I get up to when I go to bed just to keep going with occasional days of energy when I feel like myself, Never felt like this before except when I was 21 Functioning but not myself it feels like when I had glandular fever when I was 21 and the aftermath. But still going and everything is actually really minor in comparison to March and April However have come a long way and feel I am getting on top of this but taking a lot of time and a revision of how I tackle my life. Surprising what is not important
Best wishes to you all and hope you feel better daily

Checking in but haven't been able to catch up with everyone. Good to see everyone getting on with life, albeit slowly and with relapses. Very tight, vice like grip in my chest since I returned to work - possibly from talking etc a lot more. So now I'm a bit breathless again. I'm so bone tired too.

Respiratory are referring me for a heart blood test (I had a private one early on which was clear) and lung function tests but CT scan of Lungs looks clear. Possibility of a long Covid clinic being set up nearby soon'ish but seems the main focus will be physio.

I've taken part in the Oxford Uni Coverscan project run by Perspectum. I'd urge you all to check out their Webinar- positive is that there are few long term lung damage results. I had to have a horrible 45 minute MRI yesterday of my heart, lungs, spleen, pancreas, liver and kidneys. If they find anything, they let my GP know and i get re scanned in six months. Will update here.

Wishing you all strength everyone.

I forgot to add an update for anyone with sore/aching eyes since COVID, to contribute to the supplements discussion...
My vision has definitely got worse since March so I had an eye test recently. Test confirms this, so I have a new glasses prescription. Optician said my astigmatism has got much worse and asked If I had been rubbing my eyes a lot, and told me not to do that but use drops if eyes are uncomfortable. I do still rub my eyes quite a bit to cope with ongoing aches/soreness which I hadn’t really registered myself doing before this. I joe realise this is several times a day. Optician also said that I should be taking fish oil to help my eyes recover, which is probably generic nutritional advice but I just thought I’d pass it on in case it’s helpful for anyone.

Also to the poster who mentioned red fingertips up thread, yes me too.
Also still getting the spooky random sharp pin pricking nerve pains in fingers and toes endings and torso.

Final nutritional thing which I think has helped but may be placebo, I have started making a couple of jars of pickled chopped whatever veg is around to have on the go in the kitchen. I have found that eating a bit of fermented things has helped with feeling a bit brighter and clearer the next day. Or maybe that’s just the chunks of cheese I eat it with if anyone wants an easy recipe with strong flavours (a relief to taste garlic, ginger etc clearly) then I can post. I don’t know much about gut bacteria but it makes sense to me that there could be something to that.

Hi @Lightsabre@light thanks for the update, it's good to hear from you and that you're doing well. How wonderful to have had the full MRI! Hope the results are fine.

Thanks @MillStone and sorry to hear about your relapse. I'm expecting them to find a few issues but I'll have to wait and see. I just wish there was some medication that could open up this tight torso feeling. Hopefully once the blood test and lung function tests are done, I might actually get some treatment!

Well I expected to wake up feeling dreadful but I am ... tentatively ... feeling ok despite lots of additional physical exertion yesterday for purposes of the ECG and feeling like a relapse was already coming on on Thursday.
I did take a teaspoon of sodium bicarbonate in water and a dose of CBD oil last night in desperation, both anecdotally said to be helpful at curbing PEM. Worth a try for anyone stuck in the midst of it at the moment?
Hope I can get away without a relapse, fingers crossed. I think that for me, the point I'm at in my menstrual cycle influences hugely how susceptible I am to relapsing. Currently just past ovulation. If this had happened in a week's time, I think I would have found it harder. Interesting from a point of view of planning activities.

@TiddleTaddleTat interesting, hope the relapse doesn’t turn up.
I have finally done myself a mischief. The weird energy has all gone and I’m exhausted and in pain and weak.

I’m in month 7 now of Covid, and have occasionally been on this thread under different names. Apart from the fatigue, my main physical symptoms are related to my breathing and lungs, day and night. My nose is constantly blocked and I find that if I am having to breath through my mouth then I wake up 2 or 3 times during the night with shortness of breath or a loud beating heart. When I’m able to breath through my nose then I sleep better. During the day I am now smelling cigarette smoke on and off.

I have a telephone appointment this week with a Doctor from the Thoracic Medicine Department. Can anyone advise what might be best for me to ask for in terms of tests or investigations?

@Frankiegoes no advice for tests I'm afraid (beyond CT or MRI scan if you haven't had). But please come back and tell us what they say. I haven't heard of anyone seeing a throracic consultant but that seems to be the area where so many of us are affected so interesting to hear their views.

@Frankiegoes sorry you’re suffering with this. That’s my nighttime situation too. I’ve had a blocked nose since March and it makes sleeping so miserable. So does the bounding heart.

Do you get muscular pain in the night? I awake with terrible upper back pain in my muscles and spine which also makes breathing difficult.

It’s interesting that you’re seeing a thoracic consultant. Do they think your breathing issues stem from back issues?

@MillStone I think the thoracic department at the hospital is chest/lungs. I’ve looked up the doctor who will be phoning me, and she specialises in lung issues and also sleep issues! I don’t have any muscular pain at all. I’ll definitely report back after my conversation.

Good afternoon all...

Had my chest xray on Friday - lump looks like calcification, so that's all good! I'll await the official sign off...

I got an inhaler today. Tried it when I had an episode of "breathing through dust", did nothing - so it's probably not asthma then!

Cutting down foods that are high in histamine seems to be actually doing something... I think... I've cut my omeprazole to 10g, and will have stopped by the end of the week. I am quite excited about that. Instead, I am taking an antihistamine each day to see what happens. I'll report back. But...I have to say I have a feeling that the "breathing through dust" thing is allergy related. My thoughts are the Omeprazole has reduced my stomach acid so much that food isn't being processed properly (hence the iron deficiency). This is creating food allergies I've never had before. I am really intrigued to see what I'll feel like once my 30 day prescription of antihistamines has run out...

Love to you all... xxx

@Frankiegoes thanks that would be great. Oh! I thought thoracic was the back, don’t know why

You could request pulmonary tests — lung perfusion and exercise test? To check how well your respiratory system is functioning.

Hi all, just catching up on your news. @AndsLee is now in charge of histamine-type covid research.
I’m due my CFS appointment soon.
Had a “I’d forgotten about that” incident with heartburn the other day. Honestly I see why some people end up calling an ambulance for it if you don’t know what it is.
Sadly Aunt Flo has been in touch and is planning to visit soon, just in time for my 7 month coronaversary.

Hi all, just checking in. Haven’t had time to look through the thread but hope everyone is much better.
I am back at work - school full-time and I think it’s starting to have an effect, mainly feeling tired. For about a month, I have had this feeling below my throat that I can’t shift, this last week have felt like my chest feels heavier/tightier and I feel like I need to cough it out. Weird and I’m hoping I’m not heading for a bad relapse as I have gradually been better.
I have not returned to running but have been walking lots - even got hiking boots! But I think I will need to have a break even from the walks.
Struggling mentally a bit, my parents are abroad and I haven’t seen them since Christmas and it is starting to get to me.
Sending love to everyone. Xx

@MillStone have you had your tilt table results yet? My appointment has come through for a couple of weeks time.

@fedupofbed hope your phased return to work is going ok.

I spoke to a ME specialist physio today which was really helpful. She said it did sound like an orthostatic intolerance / POTS appeared to be most aligned with my symptoms. She also asked me to bend a few joints and noted hypermobility, which I've always suspected. It is mild but I did get really terrible SPD in pregnancy. Apparently hypermobiles are more likely to have POTS due to laxity of blood vessels (I think). Also learned that waking during the night with a pounding heart might be explained by dehydration, and the period triggering symptoms as well. Found it really helpful to talk this all through with someone so knowledgeable and with a view to rehabilitation, not just diagnosis.

Morning @TiddleTaddleTat . No results, which is a bit annoying. The test was a month ago and because I haven't heard anything... I wonder if the result was negative.

Good to hear that your appointment came through and that you spoke with a helpful physio. Will you continue rehabilitation with them? From recent experience they seem to be the most knowledgable, clued up and communicative people to deal with.

The dehydration theory is interesting. I wondered this too after noticing mine change throughout the day and liquid was the only variable. I've also read theories that it relates to the Vagus nerve, ANS and hormone fluctuation.