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

Afternoon all, I’ve not long woken up....
I didn’t mean to criticise anyone taking Gabapentin, just saying have a think about it as it seems to me it’s the “latest thing” personally there is a specific reason why I do not think I should use it. But that’s me, we’re all different. And it’s something I’m familiar with from the CFS community albeit “back in the day”, long covid peeps may well never have heard of it.

Hi everyone, my relapse has subsided now my period has arrived. Noted in my diary that post covid, for me a sleepless night of palpitations,fever, extreme burning under skin, headache seems to happen 2 days before my period arrives (never know what day of cycle that might be as Peri menopausal) but there is a pattern. I've also been reading about B12 deficiency and recognise a lot of symptoms ( including hands feet tingling) so am trying a supplement in case that helps. Hope all doing ok

@LetsBeSensible My fella has a really rare allergy to water. Developed into something really awful, and actually rendered him blind for a couple of years! He's recovered now, bar some sight issues in his right eye, but he sees a lot of similarities healthcare wise to how he was treated, and how we are being treated...i.e. 'I dunno'! He was prescribed gabapentin, didn't bode well for him. But, they weren't sure what they were treating really! My colleague, however, who has definite nerve pain in her back swears by it! Horses for courses...and people
..

@AndsLee omg your poor guy!
I love how much awareness and language develops, I see people saying “medical gaslighting” whilst that might be a bit extreme, it’s a great description for what we go through. Medical profession needs to stop feeling they have to categorise things and just say “dunno”

@LetsBeSensible Not entirely convinced the "gaslighting" description is extreme...I got punted for psychiatric assessment, mind...

@emoojoo glad you're through the tunnel again xx

So. My my period started today.
With no issue...

Hello everyone, I was here occasionally a few months back as DD (turned 12 in June) was suffering from mid March. Like Scottishdream she is now fully recovered, it took until about mid July but now her usual self, thank goodness. Thought this might be good to hear, especially if anyone reading has kids with long covid that they supposedly ‘don’t get’. Sending everyone good wishes for good medical attention and recovery soon

Just found this info on the Facebook long covid group

Oops I hit upload too soon. The photos are about the sit stand test @TiddleTaddleTat @fedupofbed I think you were looking at this/POTS

@LetsBeSensible thank you for this - interested to see it's being used at UCLH post covid. At my clinic they are passing me on to cardiology for the full tilt test, don't have a date for it yet though.

Afternoon folks
Hope you all had a reasonable weekend? I've got an appointment for Wednesday to get some blood drawn for a Complement C3 and C4 check. I actually think this will come back normal, but let's give it a go. My idea is, if there is no deficiency, then it must be something other than autoimmune, because according to my GP there was a rake of tests taken by the Respiratory Consultant, not just an ANA test that all relate to immune conditions. All were fine. If/when I receive my appointment from Infectious Diseases, I want to be armed with as much knowledge as possible.

Having said that...I am not entirely sure these appointments are going to be necessary? I have been feeling pretty good! Very very slight breathing through dust. Very very slight burny skin on my hands only, not the burning buzzing all over, and my cream knocks it on the head when it happens. I think the only reason I am keeping the appointments is because, as you know, whatever this is can do a u-turn at any moment...

@AndsLee such good news you are feeling better. I’ve also got bloods on Wed that will include c3 and c4 so I’ll let you know and vice versa?

I’m doing ok actually, lots of fatigue over the weekend but pain not a major issue. I have developed dry skin round my mouth and I feel a bit chesty...hoping it’s a sniffle or end of relapse.

Have started phased return to work and whilst I’m enjoying it I am getting exhausted pretty quick, and wondering if I can build my stamina up over time

@Criticallythinking Of course I'll share...glad you're feeling a bit better too!

@AndsLee good to hear that you are enjoying an upswing... long may it last!

I've received my letter from the respiratory consultant. My low cortisol result means he is going to discuss with endocrinology about whether I need to do further tests into adrenal insufficiency - a short synacthen test. He has also added on a chest X-ray as I haven't done one yet. Waiting for results from ANA test last week and to hear about my 24h holter and tilt table.

Was a bit panicked about the low cortisol result as the first thing I googled was abo it Addison's disease ... rare but fatal. Then I have also been reading that low cortisol is a common and fairly consistent finding among people with CFS/ME also.

I'm glad the Dr is being consistent in investigating possible explanations, in any case. Also important to note that the naturopath wanted to explore the same things as he did - cortisol and thyroid, in that order of preference- so I'm quite impressed and will continue with the naturopath. Supplements seem to be helping digestion along very well - will try not to TMI - essentially I wasn't absorbing much before and quite a lot was just passing through. The protocol she has me on is to prioritise good absorption of the nutrients I'm eating and to support my immune system through good gut health.

Should have said Addison's disease can be fatal, if not managed properly.

@Criticallythinking Did you have standard bloods taken before? Do you know what your WBC count was? If you don't mind me asking?

Hi all,

How are you doing? Pretty quiet in here, hoping it’s down to people feeling better?

I’ve been sort of relapsing since around Tuesday I think. All copeable but not nice-morning loo rush, aching, clearing throat constantly, unable to sleep..but last night when lying down I noticed my oxygen level kept going down to 93, it was even 92 at one stage, wasn’t for long, but did keep going back there, then back up to 98 at times. Not really seen it go that low and spent until around 3.30 am, exhausted but too worried to sleep, seeing it go down to 93.
Now shattered this morning after around three hours sleep and am unreasonable toddler to look after. Sat with oximetry on and average is 94/95, but has gone down twice to 93 this morning.

Hi @AndsLee not at all. I’ve had 5 sets of bloods, number 6 tomorrow. I only know the white blood cell count from June when it was 4.84 which is in normal range. I’ve only had c3 and c4 done once (bloods tomorrow are a repeat) and my c4 was low. My calcium has been low on 3/5 sets of blood tests and at one point was dangerously low.

@Whatnext2018 so sorry to hear you are having a tough time. Is it worth a call to the GP about your oxygen level? I’m feeling meh because I’ve come out of my relapse and seem to be doing into a pre period one now, plus I think I might have a sniffle. It never ends!

Hi @Criticallythinking oooft! I hope you're drinking loads of milk now then! I found it was quite difficult to drink milk early on, but seem to be craving it now! My WBC in May was like 9.9, which is 0.1 point off "high"... That fits with an infection I suppose. In July, it was down to 9.5. I am having blood drawn for C3 and C4 tomorrow (as you know), but I really doubt I'll be deficient. Let's see!

@TiddleTaddleTat - Interesting ideas about absorbing nutrients... I have been wondering about that. Were you on omeprazole at all?

Hi @AndsLee the query is whether I can absorb it rather than consuming enough. Have had to stop supplements for 2 weeks before bloods tomorrow.

Having a horrible day today, feel yucky and sick and tearful. Really hope this isn’t another relapse

@AndsLee no I haven't been on omeprazole recently but I was a couple of years ago when I was having early signs of gluten intolerance/coeliac.

The naturopath suspects I have low stomach acid which is part of the explanation for the numerous low level deficiencies.

@Whatnext2018 that sounds quite scary for you. Night time symptoms are awful because the worry impacts sleep which impacts symptoms. I always feel so much worse after a bad night's sleep. I hope tonight is better for you.

@Criticallythinking Sorry to hear you are having a rubbish day... Actually, I was quite teary today too. I had a wee cry with a colleague at work, but more about people's attitude since I have been unwell, rather than about the symptoms themselves. Today I feel OK again. I just had a tin of "Irn Bru" and am not fizzing in any way shape or form as much as I would have been even a month ago. I still feel a weeeeee fizz though.

@TiddleTaddleTat ahhh, so low levels of stomach acid anyway... How interesting... ponders

@AndsLee low stomach acid is common in chronic stress, among those with coeliac disease, overwork, etc. It's very common. I think adding in omeprazole to the mix often makes things much worse. A giveaway sign of low stomach acid is pieces of visibly undigested food in the stool... bleurgh

In the early days of the lungs threads somebody posted a video of a Dr who showed how to clear your lungs. Does anyone have the link to this please

Hi @Arabiannightss I think this might be the movie you're thinking of.

Although I think it was scrutinised for not being entirely correct and also hyperventilating could be dangerous. This alternative link is a gentler approach

Hope everyone is feeling okay. Not much happening here -- just treading water, pacing and trying to stay positive.