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

Hello all. Been keeping up with the last couple of weeks of the thread. I had my colonoscopy/gastroscopy about 10 days ago and have avoided the setback I thought this might cause (due to all the drugs - fentanyl, propofol etc). That was a pleasant surprise.

I still feel pretty rubbish though and sleep issues are cropping up again - waking a lot in the night, crazy dreams etc. So I wake up feeling hungover/ like I'm coming down with something every day.

I am interested in the famotidine @givemeanother and @AndsLee - as I gather it's prescription only.
Did your GP happily prescribe? The gastro doc I just saw - I asked him about it and he said his patients are finding it difficult to come by (done manufacturing issue). He wasn't much use really so my plan is to speak to the GP about the niacin/famotidine and whether I can/should safely start them. I am assuming (might be wrong!) that he won't know much about MCAS and the advised vits/meds from Dr Peers.. so need to work out a way to explain that doesn't make me sound crazy!

Ps. @mumlurker your post brings hope, thank you!

@seriouslynonames yes famotidine is prescription only. I discussed it with a gastro consultant as I'd had an endoscopy/colonoscopy in July and then had a follow up outpatients appt in early December...I had also previously tried omeprazole in April/May which I think made things worse.

So for me it was in light of having tried omeprazole, not tolerating it well, and talking a distracted gastro consultant into saying yes well perhaps. I then told the GP the gastro has recommended it.

They are only giving me one month at a time which I suspect is due to the shortages and because they may not want me on it long term. But it has transformed my chest pain. I do still get short of breath if I haven't been eating lower histamine food...but I think it helps.

And yes, I don't think the GP will know much about MCAS...but perhaps if you describe it as suspected histamine intolerance based on the foods you eat and you've read online that this drug can help?

@mumlurker Thanks so much for replying 💓your post gives real hope, so glad you are feeling much better, it seems rest is the key.

@seriouslynonames I’m really similar with the strange dreams and waking through the night and light sleep. Woke at 3.30 last night and again at 6, my dreams have been very vivid, wonder why this happens.

Had a really bad day yesterday when lots of my worst feelings from May/June came back..the numbness and shaky feeling and feeling a bit anxious/scared. It was nowhere near as bad as back then but it took me back to that time, I never want to be there again. I just felt really strange. I started bleeding but have stopped now so am assuming was the start of my period, hence the return of bad symptoms, I haven’t been like that since pre summer though, no idea what’s causing the down turn in symptoms.

I also have the strange, achy feeling in left of chest.

Only now come across this thread, but I am a newbie.

Pretty much the same as mumlurker. Except I never was able to do all that exercise stuff as has always been a bit of a physical weakling at the best of times.
I feel pretty much back to normal[my normal].
I slept and rested for 3 months. Had it all same time as mumlurker. Like her, from Aug onwards, things improved quite a bit. I too was able to rest a lot.

What I did have up to mid Oct was various minor and a couple of not so minor, health problems. Once I had got over one, it was only a matter of days before I had developed something else. 1 problem I had to have a scan or ultrasound[cant remember what it was called] in hospital in June, for something blood related. I had a number of other health problems which were related to blood in some way or another.
Everything was strange for a while. but thankfully things have calmed down since mid Oct.

I havent read all the thread. I will read through at some point.
@Whatnext2018. I used to have that feeling, but as I got very slowly better[in the initial few months, I could barely tell a difference week to week, and would have bad days within a week, but could see a bit of an improvement between each two week blocks], the feeling gradually got less, and by aug had gone away.

Should have said, I caught covid mid march[undiagnosed]. Out of the group I was with, 4 out of 9 got it[1 diagnosed as she was NHS and they were more or less the only ones able to get a test back then]. I was diagnosed with chronic fatigue syndrome in June.

A quick update the asthma nurse has advised that I can up my fostair inhaler up to 8 times a day if I need it. I’ve got a phone appointment with the doctor to go over the low grade joint aches and the weird flutter / ruttle when I breathe and the dry throat or it feeling mucusy. Hopefully they’ll be able to shed some light on it

@seriouslynonames
I think famotidine is available OTC, brand name is Pepsid. I am not surprised there is a shortage, it's been tipped as a Covid treatment.

@amyj606 I would be interested to hear what your GP says about the flutter in your throat. Sounds like the thing I describe as 'breathing through dust'. Would you share please, if that is OK?

[quote AndsLee]@amyj606 I would be interested to hear what your GP says about the flutter in your throat. Sounds like the thing I describe as 'breathing through dust'. Would you share please, if that is OK?[/quote]
Hi it’s exactly like that either breathing through dust or as if my throat is blocked with mucus. The flutter thing is weird I can feel it in my chest and sometimes back. I’m hoping the increase in my asthma medication will help with the dip with the tight chest and back ache. I’ll update once I’ve spoken to the doctor tomorrow

@lightand So glad you’ve made such a good recovery 💓
I’m March too and was showing quite a lot of improvement so I’m surprised it’s come back this badly,
I’m wondering if reinfected? I thought chance of reinfection was really rare but many seem to report it on the forums, does anyone know if it’s fairly common then? 🤷🏻‍♀️

I think chance of reinfection was very rare, but I am reading online[dont know anyone in rl] of more and more people saying they think they have had it twice.
I jolly hope it is rare and stays rare. I felt a massive inconvenience to people last time around.

@amyj606
I got a diagnosis that it's 'inducive laryngeal obstruction'. I get the flutter in the back of my throat, up to the soft palette. Thank goodness not in my chest so much, though it did flutter on one side in the early months. Yes, feels like there is mucus there. It's weird. Decreasing now though...

@fedupofbed I don’t know whether because my mood has been lifted, or it has helped lessen some symptoms, but Sertraline has helped me a lot. It took a month or so but I realised I wasn’t having anywhere near as many as dark or scary thoughts.
My long covid dr says they help your system to calm down, and to stay on them until at least the spring when we get more vitamin d.

I’m still improving slowly, I have good days and bad. I’m doing yoga most days now.
I’ve also bought an electric bike to help me build my calf muscles up.
I can’t do cardio or anything upside down (previous silks fan) but it’s worlds away from where I was even two months ago.
I’m off beta blockers now. I’d like my body to sort itself out as much as possible, I think it will be better in the long run. I know it can too, which helps.

@Crayfishforyou Hi, happy to see you’re improving, were the dark thoughts caused by covid? Or due to the whole situation surrounding it all?

Hi everyone, lovely to hear good news from @Crayfishforyou @lightand and @mumlurker - always brings hope!

@Whatnext2018 glad today is better for you. It's so tough to when symptoms come flooding back - makes me lose all hope again. I also get a strange tender feeling in my left chest.

I've had a bit of a setback today and yesterday. I've been monitoring my SATs in preparation for my Long Covid apt on Thursday and they're STILL not right - only averaging 95-96 and frequently below that dipping to 92-93. I don't have any coughing or sensation of my lungs being congested, it feels more like I'm breathing in high altitude. My heart rate's higher again today too so I'm back in a negative spiral again.

The Sertraline is now pulled from the cabinet and by my bed ready and waiting but I still haven't summoned the strengh to take it - I'm such a woose with new meds.

[quote AndsLee]@amyj606
I got a diagnosis that it's 'inducive laryngeal obstruction'. I get the flutter in the back of my throat, up to the soft palette. Thank goodness not in my chest so much, though it did flutter on one side in the early months. Yes, feels like there is mucus there. It's weird. Decreasing now though...[/quote]
Hi I hope you don't mind me asking did you find anything that helped or did the doctor suggest anything? I'm having a pretty low day not just covid stuff but with other bits and bobs mainly worry over money with the agency not furloughing me. I know its small but its getting me down. I'm job hunting but its really tricky. I've worked for the agency for years and I really think its because I couldn't work. Sorry for the rant!

@Whatnext2018 It was all caused by covid, but I’m not sure if I wouldn’t have felt like that partly anyway being ill for so long.
The happy pills didn’t do much for my panicky feelings, and they are totally the post viral syndrome. They came back the other evening after I’d done too much.
they were gone the next morning. The cycles are getting shorter

@Crayfishforyou That’s good 🙏 I definitely had high, almost out of control anxiety during my worst part in May/June and it returned a little last night with my period. I remember at its worst, waking every morning and just holding my Dd (she was asleep) and feeling this utter fear, how on earth can an illness cause this? 🤷🏻‍♀️

@fedupofbed It really does set you back, doesn’t it, thought would be used to it by now 🙈I think 95/96 is ok? That’s my average number and it sometimes dips to 93, usually on waking up or lay down.

Thank you for the reassurance @Whatnext2018 - it just seems such a low average, especially when I compare to my healthy DH who is always on 98! But you've given me some perspective. I tend to fixate on things and get dragged down by it all 🙄.

I can totally relate to the high anxiety too - the complete feeling of terror and impending doom on waking up. Fortunately that's mostly gone now.

Did any of you still feel ill on day 18, I’m still feeling hot then cold plus the headache and can just about walk around for short periods 😞

Bump

Hi @user1497873278 I'm really sorry you're so poorly. I'm kind of not sure I'm the right person to reply to you as I don't want to be the voice of doom and gloom - but I was incredibly ill for 4 to 5 months and pretty much bed bound for that whole time. I realise I'm an extreme example though and it has impacted everyone in a different way. I'm way in the minority.

I think it's still far too early for you to think about Long Covid just yet. Take comfort that you're past the acute phase so now unlikely to become critically ill. Keep resting, do not push yourself at all, and take vitamin D at the very least. If you want to be more proactive there is a vitamin stack you could try - search on YouTube for Gez Medinger Long Covid videos. Sending love and healing.

My Long Covid phone appointment, scheduled for tomorrow, has just been cancelled. I'm not surprised at all - it was with a respiratory consultant and I can't imagine how busy they are right now 😕.