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

Another update I saw the infectious diseases doctor a few weeks back and they recommended going on iron...doctor has now added that to my prescription I'm really hoping that helps with the fatigue as I feel wiped out! I'm terms of long covid I've got be be referred to a different area...my GP sent me to out of area so I've got to sort being referred over to what is classed as my area

Ok so I’m having my first niacin related flush this morning. I stupidly took my B complex vitamin (which I’ve taken for a long time in the past with no flushing) and does contain a large niacin dose. I didn’t even realise this tbh and haven’t purposefully taken high dose niacin as I know others do as LC treatment. In my very limited knowledge I suspect this might back up my theory that I’ve recently developed histamine intolerance issues since I took the high dose probiotic my nutritionist prescribed. I’ve done some reading and there are 2 histamine increasing strains in it.

At least I’m hoping it’s the niacin flush!! It hasn’t gone down yet but I read it can take 1-2 hours?! I would be quite panicked if I didn’t already know about this. I’m just so hoping it doesn’t exacerbate my prickly burning skin problem as it was finally starting to subside as was much more manageable. My skin has flared up now and I’m praying it does down.

I have been reading about DAO supplements and wasn’t sure if I should try these - do people use them with success?

I’m just so worried that I may have inadvertently caused histamine issues by overpopulating my gut with histamine increasing strains and I don’t know if/when that will eventually die down or if it’s going to be up to me to sort it out (I have no idea how it’s so complex when you start reading about mast cells in the intestine etc.

I fear I’m going to have to sort my own gut out by choosing the right probiotic strains and starting low/building gradually. I just live in fear of making things even worse.

Does anyone have a link to or could point me in the right direction of the MCAS ‘stack’ people are taking? I’m still all over the place but I’m going to try and reduce high histamine foods and wait until I’m feeling more stable and perhaps look at starting it. Did people consult with their GP first or just go for it?

Thanks Fedup I have the Mirena coil so am already getting progesterone, still feel crappy though. It all seems so complicated to calibrate. Can’t just be a coincidence that this specific age group of women seem to be so affected though. I hope it works for you and you feel better soon.

Hello everyone!
I am flying high today, literally, I had my first aerial silks lesson since I got ill last March!
I am buzzing and not in a horrid covid way, I feel amazing, but horribly unfit.
I’ve still got 10lbs to lose but I’ve shifted 5lbs since Christmas.
And my bad days are getting further apart and don’t completely wipe me out either.

I’m sorry to see some of my long haul buddies still suffering muchly.

@mylovelydd yes my lungs still burn on and off! Not as strong as it used to be but surfaces if I go for a walk or do the hoovering etc. Not my worst symptom and I can deal with it ok.

@Crayfishforyou so pleased for you! What profess you've made 💪. Thanks for reporting back, I think it's really lovely to hear positive stories on this thread.

@Fishflakes yes there do seem to be lot of us of a similar age! Maybe it's worth trying HRT... let us know if you do.

@Bambini83 I hope your flush went down okay! In answer to your other questions... I don't have a link to the stack to hand but you should find it quite quickly on Gaz Medinger's YouTube channel. There's also a really comprehensive list on the naturopath video I posted a few days ago which I found very helpful.

Some on this thread have had success with DAO supplements. They're not cheap but probably a good way of working out if it is a histamine issue you have without having to worry too much about your diet 🤷🏼‍♀️.

I use Symprove probiotic, which is fine re histamines. It really helped my gastro symptoms earlier on.

Finally, just a personal update. I continue to gently improve, and doing so much more now, especially mentally. I'm about to move up to 14 hours a week work from home and I'm much more involved with my children's lives ❤️. I'm now driving short distances and able to meet friends for lunch. I'm doing the Nuffield Long Covid Rehabilitation programme, which I wasn't sure about at first as I was worried about PEM, but I'm managing fine and enjoying being part of a structured programme. It's all free too. I'm about to start counselling to help process all the trauma and change of the last year.

The slight blip (because there is always something to stress about with this wretched thing) is that my heart is skipping a lot of beats, and very arrhythmic at the moment. I keep trying to reassure myself that this is yet another crazy but ultimately harmless symptom, but it's on my mind a lot. I've being wearing an ECG-thingy all week and meeting with the cardiologist again on Tuesday, so will be good to get that out of the way. At least now we are all taken a bit more seriously! Has anyone else had that symptom? I've no idea if I still have tachycardia as I don't wear my Fitbit any more - too much anxiety!

Thanks @fedupofbed ♥️ I need to do some proper research and get a grip of myself tbh 🤣 I’m just so all over the place. The flush went down thank goodness. The skin stuff isn’t too bad now - I’m now more dizzy and very nauseous, headachey and pins and needles are making an appearance. Still have no appetite. Spending the day in bed and trying not to spiral about how to get my DD to pre school and back next week.

I’ve decided I need to stop trying to address everything all at once and focus on the thyroid stuff for now. Going to repeat bloods privately next week if I can then try and see the private endo again ASAP.

So glad to hear you’re seeing improvements ♥️ Do you think the LC programme is what’s helped you the most?

Heart wise I do at times feel skipped beats but I don’t know if I imagine this. My HR is up at the moment but it’s hard to say if that’s anxiety for me. I’ve never had any recent heart investigations as they put my palpitations or past tachy down to anxiety. I hope you get on well with the cardiologist next week.

@Bambini83 I've not being doing the programme long enough yet, but feeling pretty positive at the moment as I've had no relapses since it started.

It's hard to say what's helped me most... it could just be time as my body heals. I've also been doing Perrin now for 6 weeks which I think is helping. I think I've seen the biggest success though through immersing myself in mind body healing. I've always felt all along that my symptoms (fatigue, heart, breathing, etc) were related to disfunction of the autonomic nervous system so I've been looking at different ways to focus on healing that and switch my body out of fight or flight mode. I also started taking Sertraline which helped more than I thought it would. It's hard to explain succinctly but it's like I have to try and calm my body down, reassure it and tell it that we're safe now.

I am definitely still interested in the Perrin technique - I think that could be one for the future potentially.

So glad you’re on the up @fedupofbed ♥️

I started using the Curable app when I was in a bad way in January and I do think it was helping. I had a couple of decent weeks early March and I honestly don’t know why. I struggle to find the time/headspace to do it but I know it’s a priority.

I’ve managed to cobble together an eating plan that is low histamine ish, calorie sufficient and within the restrictions I’m already working with - no gluten, dairy, eggs etc. It’s very samey but I’m going to stick to it for a couple of weeks and see if it helps. I’m taking daily antihistamine. I’m scrabbling around trying to worry about thyroid/autoimmunity, low histamine, gut healing and it’s causing me too much stress. If I can get more stable I’m looking at moving to AIP protocol but trying to keep that low histamine will be extremely challenging!

I know I’m really being useless with all this MCAS stack thing but the Tina Peers video with Gez she said to take the non flushing version. My understanding has been that we should be taking the flush version (niacinamide). My B complex has 100mg of that and 8mg no flush - I’m wondering if that would suffice. I haven’t been taking it with any regularity recently. 100mg actually seems like quite a lot to start with?

Good luck with the low histamine diet @Bambini83 ! I hope it helps. Re niacin Dr Peers recommended the non flush as a personal preference (she hates the flush!) but from what I can read the flushing version is better. I personally quite liked the effect it had in me - it kind of felt like it was working 🙄😊. I started on 50mg a day and gradually built up to 300mg.

I'm sorry I'm not up on thyroid issues but someone in my Nuffield group mentioned in passing that she couldn't take it because of her thyroid meds?? But not sure if it was meds or the condition, or whether it could have an effect on any tests you might have? I'm sure you've already researched this but mentioning in case not.

Thanks @fedupofbed! I took a b complex for a long time last year with 100mg niacin without even realising it had that much in! I hadn’t flushed before now until this week.

I’m not on any thyroid meds and from what I can tell it’s recommended to take a decent B Complex. You shouldn’t take biotin prior to any blood draw as it can skew results (which is in the B complexes) which I know about.

I’m not going to take the quercetin as I’ve read conflicting things about that and thyroid function.

I still can’t get my head around the ferritin but from what I read I’m incredibly convinced based on low ferritin without anaemia isn’t a good idea and you should address the root cause first - in my case my gut.

I basically feel like I’m starting from scratch. It’s taking it out of me doing plans and research when I’m on a low ebb but I just need to feel I have some kind of direction and then hopefully my stress and anxiety levels will come down too. I’m so annoyed with myself I blindly went along with the nutritionists recommendations without doing enough proper research. I genuinely think it’s made me worse. Lesson learned!

I hope it all helps @Bambini83 , the gut has a huge role to play in our health. We'll all be PHD level in nutrition, anatomy, hormones and neurology by the end of this.

Thanks @fedupofbed ♥️

I know 🤣🤣🤣

So glad your slowly improving @fedupofbed
I did my silks lesson!!
I was terrified I would relapse the day afterwards but apart from hurting all over I felt terrific.
It feels incredible to ache because I have been able to do something.
I have one more long covid appointment and then I’m discharged.
Despite 10000 steps a day and 1400 calories in the last two weeks I have managed to put another 5lbs ON.
FFS.
Hopefully it’s a blip and I will fit into my clothes again soon

Ah @Crayfishforyou that's so fantastic! I know you've been on this journey (and this thread) for so long now too. Yes it must be great to feel the wholesome ache of a good workout instead of a relapse.

I've put on lots of weight too, and none of my clothes fit me now 🙄.

I saw the cardiologist today and he confirmed that I have an ectopic heartbeat. But the good news is that it's harmless, and also my tachycardia has greatly improved. So baby steps onwards and upwards.

@fedupofbed I was told a similar thing too. I’ve found drinking 2 litres of water a day has helped with the tachycardia. I down a glass of water before doing anything physical.
I took a beta blocker the other week and felt horribly dizzy after an hour or so. It dropped my heart too much, I used to be on four times that dose!

Hi everyone,

I'm 4 months, and really struggling with the fatigue (just been signed off work for another 4 weeks). I have followed this thread on and off the last few months, but a bit nervous to contribute! I'm sorry to see so many of you suffering, but it's good that a community is developing around this! Also delighted to see that some people are getting better! @Crayfishforyou aerial silks sounds amazing! Must feel so good to have been able to do that for so long!

I wanted to ask specifically about the Nuffield Rehabilitation Programme that @fedupofbed is doing? I know you said it's early days for you, so I won't take your word as gospel or anything. It's just that having read about it a couple of days ago on here I've applied and got a consultation coming up. At first I thought it seemed quite good, but then I wondered is it similar at all to the now discredited Graded Exercise Therapy, which used to be recommended for ME, but isn't any more? Just wondered if I could ask your opinion about that.

Crayfishforyou that is amazing! I confess that I came here to post my own recent triumph - which was being to raise my left arm high enough to shave my armpits for the first time in more than a year - but it doesn't sound quite on the same level as arial silks! (Still the armpit thing IS a personal triumph and I still do feel very smug about it.)

Hi @ScottishBeth sorry you're having to go through this too 💐.

Yes I had mixed feelings about Nuffield too, but thought I'd give it a go (I try anything and everything 😊). I think it's a very delicate balance between pacing and reconditioning my body, and 3 weeks in I will cautiously say it's been of overall benefit so far. Personally I like to have some kind of structure, plus the support of a physio. And there's been enough flexibility to adapt it to my personal levels (so for example, I substitute one of the 3 sessions a week with restorative yoga).

Saying that I've just started week 4, where I believe the sessions are graded slightly up for the first time. So I am being extremely cautious! There has never been any pressure at all to push myself.

Aw well done @ArcheryAnnie ! We must all celebrate our personal triumphs! I hope you continue to improve xx

@fedupofbed glad I'm not the only one to be cautious of it! But that sounds reasonable, and if there's no pressure to push yourself then that's good. Thank you for that!

And we'll done @ArcheryAnnie Hard to believe the things we have to celebrate, but all progress is good!

I've not read the full thread but I tested positive in October. Since then I have been having aching upper back and ribs/lungs which seems worse during the evening. Anyone else have anything similar.
I've had chest X-ray which was normal. Of note, I did have myocarditis caused by covid

Hello everyone
I’m still on the up.
I had a horrible tinnitus head buzzing weird day last week after overdoing the exercise. I absolutely freaked, DH came home from work and sent me to bed.
I was 100% fine the next day.
I have my second vaccine today and I’m going to cycle to the vaccine centre.
I still get total wipe out days where I just need to sleep, mainly because I overdo it, but I am so nearly back to normal

Hello everyone

I think I've got Long Covid, can I join you? I've had pins and needles in my feet since autumn which I've figured out is related to histamine. Exploratory blood tests showed that I have some kidney damage, as they are hovering around 65% function. I've been lucky to not experience major fatigue (just the usual tiredness of having a 2yo in lockdown).

Atm I'm in a low histamine diet plus a single dose of clarityn which keeps the tingling under control. I'm quite miserable having given up so many foods I love! Esp wine, chocolate, tomatoes.

I'm a bit confused if it's long Covid as I was last unwell March last year so right at the beginning of Covid where I had GI symptoms a really tight chest and chest pain and no cough. So the tingling didn't start until months later.

I'm not sure what to do next, I have a kind Dr who I think would gladly refer me to a LC clinic. But just wondering if there's capability to do anything for histamine issues on the NHS.