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

@CasparBloomberg yes absolutely , it's just so time consuming though isn't it? I'm trying to keep a record of symptoms, also what I'm eating and reaction that way (I've developed nee food sensitivities).
I've been working throughout , only ever had 2 weeks off , but fortunate to work from home at the moment so it has (just!) been manageable.

@CasparBloomberg brilliant that you’re recovering well and for the info on the body’s nutrients taking so long to change and also steroids.

Recently I was prescribed steroids but I didn’t take them because I was worried about insomnia.

I still have a corse of prednisolone to hand — starting at 60mg p/day and tapering to 10mg over 12 days. Was your course similar to this?

Just saw this pop up on active and thought I’d update cause I posted a few times on the early threads. 12 year old unwell from mid March is very nearly better and is living a normal life with school and sport. Low level abdominal pain persists, and sport tires him out more than before. But back in August I was wondering if he would manage return to school as he had been unwell for so long and progress was incredibly slow. Feel very lucky and optimistic that remaining symptoms will disappear forever within a couple of months .

@millstone I have just tried to log in and find out the dosage but it’s older than my online records show, however I’m pretty sure it was prednisolone. It was a 5 day course and I was told it was a high dose. We went into isolation for 10 days as a family on recommendations of doctors as it was to suppress Immune system and that’s what they were recommending back then but don’t think they are now. I don’t recall any side effects but I was already ill with so many symptoms. By day 3 I knew I was getting better and by day 5 I felt practically normal by comparison to the week before.

Hope this helps you too. x

@scampersaur that’s very good news

Thanks @CasparBloomberg pleased they worked so well for you.

Hi everyone, lovely to hear people reporting back with good news. @CasparBloomberg and @Scampersaur so pleased for you both ( must be so hard when it's your child).

@findingschools4myboys thank you for asking after me. It's about my 9 month anniversary today. Who would have thought? I got a funny sore throat and tired feeling end of February, which developed into high fever and flu like symptoms a few days later. I took to my bed and didn't get out for about 5 months! I've been lucky that I've never had much nerve pain, tinnitus or 'allergy' type symptoms. I did go through a rollercoaster of burning sensations, rashes, GERD, constricted oesophagus etc. I'm left with extreme fatigue, intermittent breathlessness, high heart rate/palpitations and an intense 'fight or flight' type feeling much of the time, especially at night/early morning - it took me a long time to realise that the funny feeling I have in my facial muscles is actually because my jaw is continually clenched. Symptoms still seem to cycle - I never seem to get them all at the same time fortunately. After a relapse brought on by a cold last month I'm now back to full physical rest again but still managing about 8 hours a week work from home. It's really hard but I'm trying to stay positive and proactive, and rest and relax as much as possible.

@MillStone how are you finding the niacin?
So far I've managed 200mg yesterday and going to aim for the same today.
The flushing isn't nice, but I feel ok otherwise.

@TiddleTaddleTat thanks yeah mine are 500mg capsules so I’ve been tipping out 3/4 and doing that 3 times p/day. I seem to only flush in the morning.

I hope it helps but I suppose it probably takes many weeks?

I’m desperate. I had my worst relapse yet on Nov 10 and I’ve gone back 3 months at least. I’ve bounced back a bit in the last few weeks but it’s quite scary how much ground I’ve lost.

@MillStone gosh that's terrible, do you know what prompted such a strong relapse?? So sorry to hear that.
I think that if the niacin works it'll be days rather than weeks. I'm in touch with someone on the FB group who is a private patient of Dr Peers and saw an impact in 3-4 days on 250-500mg daily

@TiddleTaddleTat possibly over doing it. Although I’m really not sure. I have been pacing so carefully and increasing activity very slowly but I suddenly crumbled.

At the time it didn’t feel like too much activity. I had also received some very sad and stressful news (ongoing) which is having a big effect.

Since then I’ve been fatigued at a level that I haven’t seen in many months — jelly, shaky body, zero energy, all over body pain, mental breakdowns. Plus an increase in all of the other ongoing symptoms...

Strangely though, since then my breathing and heart have improved. It could be due to less activity!? But my breathing especially feels different, in a better way. It’s odd makes me wonder if the fatigue and certain symptoms are two comorbid entities.

I hope the B3 works for us very soon!

@MillStone I'm so sorry to hear that, I think that emotional stress is one of the biggest triggers. Our bodies seem to shut down in a way to protect us from what feels like a threat, and I suppose that the relapses force us to slow right down in that way.
Interesting what you mention about breathing and heart symptoms, I wonder why that is. Mine have improved too, I don't know if it's time, the pacing, or all the supplements that are having the greatest effect but I'll just keep doing that and hope for the best.

@MillStone I'm sorry you're having such an awful time of it 💐. I'm sure emotional stress must be a really big trigger.

Yes I hope the Niacin works too. I've ordered the 50mg and hopefully will start taking it on Tuesday.

@TiddleTaddleTat thanks totally agree.

It’s great that you’re breathing and heart are improving. Maybe it’s the sum of the parts!

Sorry crossed post. Thanks @fedupofbed fingers crossed with the Niacin 🙂

Morning all, hope everyone is having a better day.
Poor night's sleep for me because DD was up half the night... bit sluggish here.
I am seeing some positive early signs from the Niacin. After taking it (and about 30 mins after the flush subsides) my tinnitus goes completely. It returns a few hours later. But this is a win! I've not found anything that has such a definitive impact.
I've spoken to the GP and she has said it's fine to take 2 loratidine daily, and 300mg Niacin - she looked up the specific tablet I was taking and said it could be prescribed up to 3g for high cholesterol, so no problems there.

Has anyone else had anomalies on iron blood tests? Mine have been all over the place, initially had very low ferritin, then last month had very high transferrin saturation, now it has gone very low and so has serum iron. GP thinks it's a lab error and need to repeat tests but this was already a repeat test!

Thanks for the update @TiddleTaddleTat that's really encouraging. Though sorry about your lack of sleep.

I have now developed a rash over my thighs, arms and torso, sort of like heat rash. Honestly, you couldn't make it up. Ironic how this has started after trying to reduce histamine in my diet. I can think of no obvious triggers.

@fedupofbed gosh how odd. Have you any clue what it could be - beauty products, cleaning products, new washing powder?
Christmas tree?! (Real trees always give me a rash)

@TiddleTaddleTat absolutely no trigger than I can think of. Nothing new at all. I've taken antihistamine which is keeping the itch under control.

Sorry I missed your previous message - I've had no blood tests for months now. Last one I think my ferritin levels were higher than usual. I've dropped off the radar a bit (apart from rheumatology) as everything was within normal range.

My niacin's just arrived - hooray. I'm starting tomorrow morning.

@fedupofbed that's really weird, isn't it. I wonder if it's something to do with the change of diet. Eating more of something that you hadn't before? I've realised that almonds make me feel a bit crappy after eating. My naturopath pointed out that in reducing histamine I was probably eating more salicylates but I really can't even face addressing another possible food trigger. Low histamine is my limit in terms of restrictions, it causes enough stress on its own.
I was wondering about buying some DAO tablets to allow me to eat nice food at Christmas. I'm always looking for a way to cheat... haha..

Oh it just does my head in. Intrigued about the DAO supplements .... have you done much research on this? Just had a look on Amazon and they look very pricey!

Hi @fedupofbed crikey, sorry about the rash. Could it be related to the buildup of a supplement?

@TiddleTaddleTat that’s great about the tinnitus. Have you googled that? Apparently it’s a known treatment. Who knew!

@MillStone I know!! I did the same and discovered that. So even if no other benefits I'll be continuing with it for that reason.

@fedupofbed no I haven't looked them up yet, I heard they were pricey. Oh but for a slice of rich Christmas cake... glass of Prosecco... I'm going to go mad if I can't have a few treats by then.