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

@Whatnext2018 I had the funny taste this week and it turned into sore throat. Any sign of sore throat? I also got it when I took zinc for too long. Just a thought

Falling off the cliff into insane worry today... my brain fog is so bad and it usually means a relapse. Period due in a few days too. Are we ever going to be free of this crap?

Did anyone have thyroid problems during and then gradually got better?
I stopped taking my meds in apr because when i was ill i felt hyper. Started again in jul i think when i thought my pins and needles in hands and muscle twitches could be related. The pins and needles got a bit better and maybe the muscle twitches a bit. Still have insomnia though.
But now gp wants to take me off the thyroid meds as i hadnt been taking them. But when i did start again my blood tests were in range (not taking too much)

@Keepdistance thyroid has been queried in my blood tests but only TSH has been tested. Has always been I range between 0.8 and 1.3, I do think hyperthyroid explains many of my symptoms though.

@Criticallythinking sorry you are feeling so much worry at the moment. I think that many of us are suffering secondary anxiety and depression as a result of the uncertainty and fear about our health. I hope you can get some time away from thinking about it all today, if only for a short while

Thanks @TiddleTaddleTat yes I have got secondary depression and I take sertraline, but period due in a few days and having a flare up of some symptoms thanks to a sore throat and sniffle. Plus started back at work this week and finding it hard. Frustrating thing is that I may well be in a good mood tomorrow and there is no rhyme or reason!

Yes mine was 1.66 so in right range. It's like the symptoms are right for hyper but it's not that or maybe it moves around a lot so depends on when test is taken

@Criticallythinking C3 and C4 levels normal... Actually really relieved about that...:) I feel sad to read that you are feeling low this week xxx

Unverified info, but from the covid Facebook group.
Apparently they recommend the flu jab at UCLH....

@LetsBeSensible thanks that's really interesting . I mentioned the limiting of heart rate to my hospital consultant who is working in our post covid clinic and he thought the idea ridiculous. I'd seen it on various websites regarding CfS/ME and through experimenting on myself, had identified that I felt much more fatigued 24-48 hours after letting my heart rate spike. He said there was no physical explanation for it.. I suggested he did some more reading on the topic.. hence it being a bit of a frosty first discussion!

Also interesting re the lactic acid. I wonder if that's something I can request next time I speak to him.

@LetsBeSensible I should add that I find I can go above 55% of my max hr with no discernible effect. However going above 70%, which is about 130bpm for me, results in significantly noticeable fatigue. I often get up to this just sitting and taking part in video calls.

I'm quite interested learning more about the histamine intolerance. It's actually the most feasible thing I have seen for my own personal symptoms yet...

@Whatnext2018 I'm here! I check in every so often to see how you all are. Been quite busy with the Longcovidsos campaign, also had a big relapse last month for two weeks. I'm signed off now and trying to rest. I'm going to London for the coverscan thing next week. I'm ok but the fatigue and muscle aches come on every day after about 3

I only seem to still have the pins and needles and muscle twitches. And insomnia.
But my spo2 seems to be permanently down to 98-99 from 100. And gets no reading from my other fingers which could be concerning.
But i do still feel odd before period. Constipated when previously it would be the other way.
SOB or asthma wheezing sometimes.

Anyway the gp had stopped my thyroxine. So im really PO.
Worried the pins and needles will get worse again maybe more constipation. I can see why they did it. But my levels are perfect and they are just assuming im not taking. (Stopped when felt hyper in apr). Ive been taking for a month when i did the blood test.
She said i cant have it as it as my levels would need to be higher say over 4. I started when tt c and just continued. I clearly needed it. The fact i had probable thyroiditis in apr means i do have a thyroid problem i think. Feels like a penalty @ for not wanting to go to gps in mar due to covid risk. She tried to argue it was safe....
I just dont think they realise
I just hate dealing with drs i had some bad experiences previously and had to see a lot for infertility for years. So i end up compulsively avoiding going etc. GPs especially talk as if they know so much but are often wrong. (My eldest was really ill at 4yo after the GP wouldnt give antibiotics for ear infections.
I think knowing the issues in the nhs really increased my fear of covid.
I mentioned to them how i thought id had covid and felt hyper then . But not interested at all.
I also had an argument with maybe the same woman in march when they wouldnt let me have asthma meds (as again i hadnt had in a while). I have ended up needing them as still SOB. She told me i wasnt asthmatic!! Ive managed on ventolin for years but knew i could get worse with covid. Because im always wheezy with colds. Dont run about etc.

@keepdistance I have been diagnosed with under active thyroid since Covid. I am in levothyroxine 25g. But I wasn't suffering any symptoms.

Just popped back into this thread and am sorry to see some familiar names still struggling. DD is now on 5 months of being bedbound and she's been getting worse.

In any case, there's been some progress and I have a few things to share that might not have been mentioned already.

Bearable is a great app we've been using to record symptoms, activity and mood. I can't recommend it highly enough. It's free but you can pay a bit for the insights info. The best thing is that you can export the data if you want to share it with a health professional. It exports as a cvs file so it's not especially user friendly for the recipient, but if you know how to use excel, you can make some graphs, filter it etc. Or you can just screenshot the relevant info.

We also did the 10-min standing test which showed she had PoTS symptoms. So we had a consultation with a private PoTS specialist cardiologist at the Nuffield in York this week, via webcam as we live 4.5 hours from York. It was £200. He diagnosed PoTS immediately based on the symptoms info from the app and her standing test results. He didn't want to do a tilt test because they don't always show you have PoTS as the raised HR on standing doesn't happen all the time. He said it's better to crack on and start treatment and that will show it either way.

He's prescribed Ivabradine which my research shows is one of the most effective ones. He also advised a few diet changes etc, everything that's on the POTS UK site. Anyway, just mentioning in case anyone wants to speed things up and doesn't want to wait for the NHS or to have to see a non-PoTS specialist.

He's also given us a few letters, one saying DD should shield and another for A&E saying if she goes there, to give her IV saline for 8 hours, instead of just doing the usual tests and sending her home, which has happened twice.

Happy to answer any questions. Just tag me in case I miss the post.

Kitcat thats interesting. As the gp was saying my dose was very low... As in i dont need it.(75/50 or 25/50 etc).. But i do know they start low and can increase. How many months after covid did it come back as hypothyroid? Just wondering if it was more recent as thyroiditis etc is often a pattern of hyperthyroid for a while then the hypothyroid.

Hello @Whatnext2018 and everybody else
I’m still lurking here too.

Sorry to hear you’re suffering, it does seem to be a trigger doesn’t it? The hormone crash must have something to do with it. Interesting it effects the immune system, never knew that!

I had been feeling quite a lot better these last few weeks, and last week went for two walks (including a cheeky bit of extremely slow jogging) in the countryside near my house. It felt amazing, and my lungs actually felt ok. Two days later, and yes in the run up to my period too (I have seen a pattern here) I had another relapse. Really tight chest, cough, fatigue, muscle aches, shivery etc... I even had a Covid test to rule out a reinfection.

I’m still not convinced I ‘overdid’ it per se, but also think the colder weather may have triggered something, or I actually did just get a cold bug that sent my immune system into overdrive again.

Who knows... feeling better now but still so so tired all the time. Despite which, I’m struggling to sleep!!!

Sending good wishes to all xxx

Oh and because I was self isolating after my test I had to reschedule my Rheumatologist appointment... argh. Only two more weeks to wait but it feels like forever! I just want to understand what my positive autoimmune test means... and my symptoms.

@keepdistance @Kitcat122 I was wondering about thyroid because this week I went absolutely hyper, I went for long walks every day as I could see I was sleeping less and feeling energetic.
Then after a few days I was awake all night, 2 hours sleep the next morning and bam -wide awake all day. Tried 3 times to get in bed and drop off for a nap. No joy. Now I ’t know if I’m awake or asleep what or when. Is that what it’s like? I’ve only ever really had a bit of pre-period insomnia, this was another level.

Hi all,
Much the same here, waiting to see Audiology & CFS.
Chest pain, tightnrss & breathlessness has increased since chest infection 3 weeks ago, but I am sure it will settle

Flu jab booked for next week with Tesco's.

Thank you to all those posting updates.

@BonnesVacances I'm so sorry your daughter is still so ill. It must be so incredibly hard for both her and you. I feel for her as I was pretty much bed bound for the first 5 months. The last 2 months though I have been very gradually improving and am out of bed now for most of the day. My POTS like symptoms have pretty much gone now I think. I followed some of the basic advice (salt, fluids, electrolyte drinks, compression socks and as much movement/low level strengthening as I could manage lying down) but who knows how much of that helped and how much of it was time. One supplement that seemed really beneficial was high strength Omega 3 (Pharmepa Restore) that I learned about when researching ME. Again, could have been a coincidence though. I'm really glad that you've found a specialist who is really helping and hope treatment makes a huge difference for her 💐.

Sorry about your insomnia @LetsBeSensible , I can relate to that too - 'tired but wired'? If I do too much I can't sleep and it becomes a big vicious circle. When I feel like that it helps for me to rest as much as possible in the day, even if it feels counter intuitive, and do very relaxing things to calm down the mind and let it switch off more at night. I've also ordered some Melatonin but it's taking ages to arrive.

@Whatapickle78 sorry to hear about your relapse. I have had a cold which has felt minor but has triggered a relapse. I had just come out of a big relapse caused by being exposed to (but not catching) a nasty cold. I am fairly certain now that my relapses are happening when I catch or am exposed to something new. The big challenge is that with a 6yr old ds I am exposed to lots and presumably my immune system is run down.

Do we just wait for this to resolve or are we stuck with it? Doesn’t bear thinking about!!!

@LetsBeSensible and @fedupofbed I completely get the tired but wired thing usually when something is brewing - but who knows!

@BonnesVacances I don’t think we have spoken before because I found this thread later than others. I really feel for you and I can’t believe we as society are not making more of this - our kids are being affected and that’s an outrage. Anyway just to send solidarity. It sounds like you have some solid advice which always helps.

@Criticallythinking I'm not really on the thread much. Just pop in now and then to share info based on my experiences and research on ME (and now PoTS). DD has had ME since 2016 when she was 14, so this has been a much longer journey than 5 months. She was doing really well and was in remission before catching Covid. We were shielding her too, but think DS brought it home from school before the lockdown as his Maths teacher later tested positive. I can't process how I feel about that, so that's in a box labelled 'deal with later'.

Ah @BonnesVacances I am sorry to hear that. Life has a way of doing this crap. It is really helpful to read your posts so thank you x