Long Covid support thread

[fedupofbed]

A thread for those with ongoing Long Covid symptoms.

Some resources very kindly collated by @letsbesensible in the last thread:

UK sepsis trust vids go.mumsnet.com/?xs=1&id=470X1554755&url=m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video go.mumsnet.com/?xs=1&id=470X1554755&url=vimeo.com/442593497?utmcampaign=5370367&utmsource=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512 Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Actually, scratch that- I don’t need to understand how it works, but can anyone kindly translate this into something sold at the pharmacy?

From Article
www.ncbi.nlm.nih.gov/pmc/articles/PMC4684129/

‘Clinical trials have shown the utility of using oral replacement supplements, such as l-carnitine, alpha-lipoic acid (α-lipoic acid [1,2-dithiolane-3-pentanoic acid]), coenzyme Q10 (CoQ10 [ubiquinone]), reduced nicotinamide adenine dinucleotide (NADH), membrane phospholipids, and other supplements. Combinations of these supplements can reduce significantly the fatigue and other symptoms associated with chronic disease and can naturally restore mitochondrial function, even in long-term patients with intractable fatigue.’

Well I do recognise Nicotonic Acid on there (Niacin) which I’ve been taking for a few months and has definitely helped a lot with brain fog especially. Yet the tests show my system is still faulty... if it’s all down to mitochondria and not heart trouble.

You can buy it from Solgar
solgar.co.uk/products/solgar-niacin-vitamin-b3-100-mg-tablets-pack-of-100

DO speak to your GP first though as it can cause problems with some conditions/drugs.

Also start with low dose, then work up. Gez Mendinger’s videos on YouTube are very good on this.

The others though... I’m not sure!

Let me know if you find out.

@chattylion You can get high dose CoQ10 from
Holland and Barrett too

Hi all, hope I'm OK to jump on. Have tried to read as much of the thread as possible.
Had covid start of Feb (mild) and felt fully recovered within about 10 days.
Monday this week my health hugely deteriorated. Horrible fatigue and headaches. No appetite and food doesn't taste the same anyway. Just gone to the bathroom mirror (insomnia too) and have this horrible rash on my face and chest. Basically I feel a right state. Gp suspects post viral fatigue. I guess it's too soon to say long covid as it's only been 6 weeks! I've been taking vitamins c and d and have also ordered echanacia just in case. Lots of you saying about Niacin so may try that too. Any thoughts? Thank you

@Fedupmum13 as you say, too early to know really, so I'd advise rest as much as you can - don't try to get fully back to normal routine yet. In terms of niacin etc, before you start taking it please do watch Gez Medinger's videos on YouTube. He explains what the niacin is for and what else is recommended with it. And talk to your GP before you start it too, as the nicotinic acid version of niacin can be tricky - it gives a flush effect. Gez has a whole bunch of videos on long covid on his YouTube run-dmc channel - it's one with Dr Tina Peers where they explain what they think may be happening with some long haulers, and what to try out. But I think resting and pacing is your friend first and foremost. See also the bmj link I posted on the previous page of this thread which is in relation to guidance for GPs on long covid - might be helpful. Good luck!

Just posting this link to a really important article on long Covid. I was an early poster on these threads last March/April and have had a dreadful 12 months. I'll try and update soon with a brief desciption of what I've been through, but I've had no involvement as a 'Covid' patient in all this time because I've never had a positive test. I fear if I rock up to my GP now and tell him my fears, he'll just wonder why I didn't bring this up before now. It's complicated, I've had other health issues in the last year which have muddied the waters. But I've never been so ill in my life and am only getting worse, possibly because I've been in denial about the impact of the virus. Today I had to give up my OU degree for the time being because it physically pains me to try to take in information now. Can anyone relate to that? And in recent weeks I've developed a worsening tremor in my head and neck and sometimes my spine, shoulders. Feel like this is going in a very alarming direction for me, but the health service is decimated, it seems to me.

Anyway, solidarity with other old-timers. Hope this article helps someone:

www.theatlantic.com/magazine/archive/2021/04/unlocking-the-mysteries-of-long-covid/618076/

"A MISSING PIECE of the puzzle, the Mount Sinai teams soon found, was right in front of them: breathing. Everyone knew, of course, about severely sick COVID‑19 patients on ventilators. What the researchers and doctors at Mount Sinai hadn’t realized was that even mild cases might be affecting respiration after the acute phase of the disease. Evidence began to accrue that long-COVID patients were breathing shallowly through their mouths and into their upper chest. By contrast, a proper breath happens in the nose and goes deep into the diaphragm; it stimulates the vagus nerve along the way, helping regulate heart rate and the nervous system. Many of us breathe through our mouths, slightly compromising our respiration, but in patients with post-acute COVID syndrome, lung inflammation or another trigger appeared to have profoundly affected the process. In these cases, patients’ breathing “is just completely off,” McCarthy told me."

That paragraph - omg. One year on, I ever more frequently have days when I can't walk down the street without this awful shaky vibrating feeling in my solar plexus and chest that knocks the breath out of me. I read that paragraph and it was like an epiphany.

Here is a link to the Stasis website that offers the completely free breathwork programme and online tools for long Covid sufferers. I've just signed up with my email and am excited about finding out more. Seems to be helping people, according to the Atlantic article. Fingers crossed...

stasisperformance.com/

Hello, can’t believe I’ve only just spotted there is a COVID thread in here! Looks like I have a lot to catch up on...

My long COVID is 70% fatigue 28% brain fog and 2% dropping things... Though some days I have 500% brain fog and fatigue mixed up and I can’t do a thing.

Things that are helping me-a bit - doing nothing, sitting instead of standing, not leaving the house, bathing not showering, not working. So far so impossible. I’m sure you’re all in a similar position.

Supplements which have helped- n acetyl cysteine, vit D, multi, iron, proper breathing.

Might have to look into the Niacin.

Look forward to getting to know you all a bit better.

Have any of you had the vaccine yet? I think I’ll be offered it soon but I’m not sure if I want to have it just yet given the side effects people are reporting (especially those who have had covid) and also the fact I still have myocarditis from the first time around. I feel I’ve made a lot of progress these past few months (first ill in March) and I’m scared of going backwards although equally don’t want covid again! I’ve heard Phizer is better but have been told there’s none left by my surgery!

@Pubbles123

I’ve had one dose of the AZ vaccine. I had a temperature for 48 hours and I felt like I did when I first developed Covid symptoms at the end of February last year. But they cleared up after that. (The Long Covid is still with me sadly, though. I think I’m improving but very slowly.)

@Pubbles123 can I ask what your myocarditis symptoms are ?

Hi All,
I’ve logged in to see whether anyone has had the vaccine.
I’m booked in for Wednesday and as much as I know it is necessary I am worried!
@Mittens030869 - your comment is very helpful! Anyone else?

@Schonerlebnis back in April / May time myocarditis symptoms were sharp stabbing pains in my heart, shoulder and sometimes arms. I also had awful rib pain (Costochondritis) but unsure if that was related but it’s all
Inflammation of course. I also had the sensation that someone was sort of pushing a finger hard onto my chest. Can’t really describe it well but like a pushing sensation but only very central on my heart. The stabbing pains left me in September, then I had a MRI which showed ‘resolving myocarditis’ that was 6 months on from acute illness so
I guess it must have been bad. I also had a cart raised HR especially on any sort of activity. And lots of palpitations too. It sure felt bad! By Xmas I felt my heart was much better, less palpitations and less stabbing pains but still a sort of dull heavy ache after any sort of exertion. I still get the dull heavy ache a little but it’s lessening. I also still have some ectopic beats and my Hr is up on what it used to be but as I’ve been doing very little for a year that must contribute too, still though it seems higher than it should be doing gentle things.

@baroqueandblue

"A MISSING PIECE of the puzzle, the Mount Sinai teams soon found, was right in front of them: breathing. Everyone knew, of course, about severely sick COVID‑19 patients on ventilators. What the researchers and doctors at Mount Sinai hadn’t realized was that even mild cases might be affecting respiration after the acute phase of the disease. Evidence began to accrue that long-COVID patients were breathing shallowly through their mouths and into their upper chest. By contrast, a proper breath happens in the nose and goes deep into the diaphragm; it stimulates the vagus nerve along the way, helping regulate heart rate and the nervous system. Many of us breathe through our mouths, slightly compromising our respiration, but in patients with post-acute COVID syndrome, lung inflammation or another trigger appeared to have profoundly affected the process. In these cases, patients’ breathing “is just completely off,” McCarthy told me."

That paragraph - omg. One year on, I ever more frequently have days when I can't walk down the street without this awful shaky vibrating feeling in my solar plexus and chest that knocks the breath out of me. I read that paragraph and it was like an epiphany.

I really really think you should see your GP. Hope you improve soon

@Covibored Sounds quite a lot like I was. I didnt realise dropping things was part of it. I have broke a fair bit of crockery in the last few months!

@Pubbles123 and @Moodgie I have been offered the vaccine, but refused it for now. I told the NHS I was going to wait until I know more about it. The clot thing didnt help as I had some blood issues with the long Covid.

@lightand What issues did you have?

@Pubbles123 I tested positive in October (mild symptoms), i had ecg which was abnormal and I am awaiting mri as cardiologist thinks I have myocarditis. I have sob, pressure feeling on chest, breathlessness when walking. I had the vaccine in January (Pfizer) and was fine, I had a sore arm and 24 hours of feeling a bit off

Can I just ask about your myocarditis, did you have an abnormal ecg with this? And do you feel your symptoms are getting better

Yes symptoms are without doubt much better. Took maybe 3 months to be a bit better than 6 months more improvement and felt semi normal. Mostly it feels normal now.
My ECG was normal
But showed many ectopic beats, however it was done in august so probably too late really for when the proper damage was there.

[quote Moodgie]@lightand What issues did you have?[/quote]
Minor blood issues as in blood in throat[never had that before and it cleared quickly]. Blood in nose[that happens quite often at the best of times anyway]. Blood somewhere else too. Didnt realise there were quite so many places we can bleed from.
But a more potentially serious blood issue in womb[I am past menopause]. I had to have an ultrasound which confirmed my symptoms. Thankfully it cleared up relatively quickly, but blood/fluid should not have been there at my age.

I had the Pfizer vaccine mid January - chills and a mild temperature the next day.

Still have the tight torso feeling and difficulty walking uphill/exertion. Doctors have given up on me I fear as all blood results 'normal' apart from high Ferritin.

@Lightsabre I have high ferritin too. Due to have it repeated soon to check if it's persistent. Did anyone ever tell you what it might mean or is it a general inflammation marker?

I wondered if taking the niacin supplement could be the reason...

@givemeanother, it was in the high 600’s last year April and Oct - liver function fine though. Had it done again last week and it had reduced to 389 and they’ll take again in 8 weeks. I think it is indicative of inflammation.

@Pubbles123 thank you for replying. If you don't mind me asking, what were your symptoms. I'm not sure it is myocarditis but cardiologist seems to think it is, I have to wait 3 weeks for my MRI scan

@GransKitchen if you scroll back up I’ve posted about it earlier today. Hope you feel better soon, take it easy.