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

Thanks @Lightsabre you've spurred me on to get mine checked again. Rarely manage to speak to the GP without ending up cross so have been putting it off!

Hi, hope you’re all coping ok

Coming on to see how some of the old timers are getting on, it’s been a while
@fedupofbed @TiddleTaddleTat @criticallything

@LetsBeSensible

Hi , thanks for checking up on me !
Ploughing on ok, I first had Covid in March 2020, over 12 months now. Been managing a lot better since around November when I started low histamine diet, antihistamines and taking nicotinic acid.
Ongoing issues are exercise intolerance (although I can now walk 1.5km without increases in fatigue afterwards), PoTS , especially symptomatic around my period, and low ferritin (which may be the cause of some of the fatigue and the tinnitus).
I've now been prescribed famotidine by the PoTS clinic as they agree based on symptoms and response to the diet and H1 blockers (antihistamines) that MCAS is a big component of my issues.
Attempting to broaden my diet as an miserable on such a restricted one but often getting flares in symptoms when I reintroduce foods. Still need to completely avoid alcohol, chocolate, tea and coffee (even decaf), legumes, corn. Couldn't eat oats and gluten previously and that continues. However I have been able to have small amounts of sugar, white chocolate, and low caffeine green tea, so it's not all bad!

Hi @Whatnext2018 thank you for asking after me. Sorry I haven't read through all the previous messages but hope you're doing okay?

@TiddleTaddleTat good to hear from you too, what a long journey we've all been on.

After trying practically every treatment/ suggestion out there over the last year, I've still not found anything to have made a dramatic difference. I'm definitely slowly improving though - more remote work, more household chores and a few short walks.

I'm now fully embracing the mind body connection and working on calming down my poor central nervous system, which has been through so much trauma over the year. I really feel my body is stuck in a permanent hyper vigilant flight or fight response. I've therefore gone from being a news junkie/ voracious researcher of all things Long Covid related to completely avoiding all news and staying away from forums - which is why I haven't posted for a while sorry.

I will keep checking in from time to time though, especially if there is improvement!

Oh and I'm also starting the Nuffield Long Covid Rehabilitation Programme next week, which is a free 12 week physio-based programme.

Love and healing to you all ❤️

Some good practical videos on managing fatigue from Sheffield Uni and Newcastle NHS Trust:
covid19-recovery.org/deal/managing-fatigue-cresta-clinic-awrc/

Can anyone recommend any web links for easy recipes for low histamine or low inflammatory eating?

This BBC link gives the gist of what the principle of it is. I’m a convert- i have felt quickly ill from eating and drinking some of the things off the list like chocolate and alcohol. Sadly!
www.bbcgoodfood.com/howto/guide/what-low-histamine-diet

Haven’t gone for the proper stick to the list approach but I’m probably fed up enough to try it now. So if anyone has any simple recipes to recommend that would be good as it looks fairly restrictive

TiddleTaddle I read that Deliciously Ella was crediting her recovery from POTS to her approach to eating. I had a quick look at her website and there are some things that look nice to try, but some of recipes include ingredients that aren’t recommended for low histamine so who knows. I’m easily confused these days..
deliciouslyella.com/recipes/categories/savoury/

Thanks @Whatnext2018 I have not been checking in as I’ve been fed up really. Still not seen a Dr or-got any real help. I had to spend a lot of energy appealing PIP. I think my long covid referral was rejected, the GP said it probably wouldn’t meet the criteria. I just can’t see anything changing soon or any medical help coming. I guess now I am 1 year 6 days, my coronaversary was last week.I’ll never be counted as a Long Covid because I meet the CFS ME criteria. Sorry I’m just quite fed up at the moment.

Hello everyone on my 1st year covid anniversary!!!
Lucky me!!!

I have improved so much. I have a good four or five days where I feel completely normal and then a couple of days where I just want to sleep and the ectopic heart beats are all the time.
But that is so much better than I was even a couple of months ago.
I am doing things I couldn’t have dreamt of at Christmas, I’m up to over 6000 steps a day. I can cope with loud noises.
I cycled 4 miles the other week. There were no hills on my route, but still, progress!
I’ve also booked my first silks class for April. I have three weeks to get myself I’m some semblance of shape. I am both excited and terrified of overdoing it.

I still get pains under my arms, the heartburn has come back quite badly and I get palpitations still.
But it is all so much milder than it was.
I know it will go now.

Just a quick update I had my first appointment at the infectious diseases clinic today...they are passing me over to the covid clinic...they said it seems very much like CFS.

Just wondering if anyone else has had low calcium flag up post Covid? My 18yr old is being awaiting hospital appt because of this... I too also have low calcium nearly 3 months on, but not as severely. We were both pretty poorly with Covid and neither of us are fully recovered

Morning everyone.
@fedupofbed @TiddleTaddleTat @LetsBeSensible @Crayfishforyou it’s really good to hear from you, and how you’re getting on. We are all still on baby steps it seems, to mixed degree. It’s disappointing how bloody slow recovery can be.... love to all of you.

I had a supplements question:

Just wondering if anyone else taking/has tried NAC supplements had it cause horrible stomach cramps?

I can see this is listed as an uncommon side effect... if anyone else has experienced this, did it go with time? Or did halving doses work? I really want to give NAC a go but feeling a bit floored by two days of gastric symptoms set off by it.

Thanks!

@Whatapickle78 yes I had terrible stomach cramps with NAC at one stage. I was also taking high dose vitamin C and quercetin at the time and thought they had caused it. I had to stop taking both vitamin C and NAC at one stage as my stomach had become very sore.
After a break I started taking NAC again but only ever with a good sized meal that contains a good carbohydrate component .

My heartburn was worse than ever on NAC, I ditched it.
I’m now on zinc, spirulina, vitamin d and magnesium.
I’ve stopped the CBD oil too as I don’t need it any more. But it did really help for a long time.

@Crayfishforyou @TiddleTaddleTat
Thank you! I haven't so far found anyone else (by searching online) who has mentioned that side effect effecting them. Sorry you've had the same.

I am also taking high strength Fit C and Quercetin - been for a while with no issues. Taking them at different times to the NAC sounds sensible actually.

I've taken a break from the NAC and about to restart. Will try again with a big meal as you say....

Determined to try it properly now I've had the possible 'dysfunctional mitochondria' diagnosis, as I understand the enzyme approach (NAC and C0q with Niacin) can help...

*Vit C

Hi @Whatapickle78 I couldn't tolerate NAC either - gave me appalling heartburn.

I'm having a break from most of my supplements for now. They were getting so expensive without any noticeable improvement. I'm still taking niacin, vit C and vit D though.

@Crayfishforyou so pleased to read of your continued progress!

@LetsBeSensible sorry that things are still so tough 💐.

I’m really struggling mentally with this at the moment I know compared with many people I am lucky as I am still able to work (though sometimes it’s a struggle) go for a walk and generally get through the day.

Maybe it’s the 1 year coronaversary, maybe it’s that I’ve got no better (and in some ways worse), but I am so down.

How is everyone coping mentally? I just feel in an absolute pit at the moment and constantly want to cry.

@BobBobBobbin

I know exactly what you mean. It’s shit, isn’t it?

Constantly having to lie down when I’m breathless and the persistent coughing and wheezing.

No, I’m not in a good place mentally, and I often want to cry. I already suffered from MH issues before this (PTSD and CFS), but I at least had a life before Long Covid.

I’ve had this for 13 months now. I’m improving, in that I can be more active during the day, but it’s very slow.

Quick check in - have been reading updates. I too am struggling again both emotionally and symptom wise at the moment. I’m wondering if all the supplements and gut regime are helping or actually making me worse!

Had a decent couple of weeks early on in the month after struggling since Jan relapse/reinfection. Flared up this week and the skin burning/itching is immense. Just had a panic I’m taking too much niacin as part of B Complex and another bedtime mood stabiliser the nutritionist has me taking (170mg total daily). I’m going to come off it until I see her again. I haven’t flushed so I’m not entirely sure it’s that but I’m starting to wonder if all these supplements are just too much for my body right now! I had come of everything and started fresh adding a new thing each 3 days which has taken ages. I’m on all these gut protocol supplements too and I don’t know if maybe I’m experiencing die off of bad bacteria with the high strength probiotics - can’t ask my nutritionist as she’s on leave at the moment but I suspect I might need to dial it back. I’m also back on homeopathic remedy again. I don’t feel 100% confident in her advice sometimes and that’s frustrating.

I finally saw GP last week who said my chest sounds clear and doesn’t really have any concern about my SOB. She sent me for an antibody test which has come back negative. I know this means nothing but emotionally I’m quite gutted. She basically admitted that she doesn’t know what’s wrong or really how to help but was complimentary of all my self help efforts. She basically said I’m heading for CFS diagnosis.

I’ve also heard from thyroid nurse and it seems my thyroid scan from last summer was ‘misreported’. She’s sending me for updated ultrasound and bloods - this has peaked my anxiety that there could be something suspicious with my growths. Have to remind myself the sonographer explicitly told me at the time there were no concerning features.

Finally spoke with neurologist after being referred last May. He’s sending me for cervical spine and brain MRI - I’m pleased about this but also dreading it.

I feel at sea with everything and anxiety is right up again. I had managed to calm everything down again - back into my mindfulness/meditation regime and vagus nerve exercises. Back to square 1 (or minus 100). I think the stress/anxiety is a huge contributing factor for me but it’s so hard to get a handle on this.

Feel so much for everyone still struggling & am grateful for this thread as a lifeline.

wishing everyone better

I’m so sorry for all of us feeling this way
Wish I could post a wine glass instead of flowers dammit!!

Even though I can feel there is a very very slow trajectory to getting better, I too hit the wall every couple of weeks.

The only thing that really keeps me going at those points is thinking back and trying to remember how I felt 6 months ago - much much worse.

There are definitely cycles of symptoms, and the feeling better weeks, then feeling worse are nastiest part of this illness psychologically. Sometimes I feel like a goldfish, cycling through different possible ‘cures’ or treatment ideas... the MCAS theory... the mitochondria.... the NAD... (what even was NAD?!) etc etc and half forgetting I’ve looked into it all before! Without any real clear guidance from the NHS it’s just absolutely gruelling trying to figure this all out ourselves.

Big love to all of us struggling xxx

Sending love and healing everyone.

@Whatapickle78 what you say really resonates with me. Yes we've tried everything over this journey haven't we? It's painfully slow but it definitely helps to look back and see that progress has been made. I read somewhere about the analogy of climbing a mountain - the mountain path spirals round and round the mountain so it seems like you're going round in circles and not achieving much, or indeed going backwards. But you are - just look back at the view.

This time last year I was still sick in bed. I was just about able to drag myself to the window to watch my kids looking for Easter eggs in the garden. Then they came up and visited me afterwards and we all put on a brave face. Today I was up and dressed at a decent time and able to wander around the garden with them and enjoy the fun of the hunt. Stuff like that I completely took for granted, but now I make sure to appreciate every moment.

Happy Easter everyone. Sod the clean eating, low histamine, etc etc... not quite up to alcohol yet but will definitely be stuffing myself with chocolate 😊.

I'm having a bit of an issue with work right now. They're very helpful and helping me to ease back into it, but I'm popping in for an hour per day and it kind of feels like I'm not helping them much, and I spend the rest of the day pretty much sitting down exhausted/feeling ill at home. Can't help but think I'd be better off not working but feeling well, which I do so long as I don't move.
I've never been off long term ill before. Not sure what to do.

No advice Mysterian but hope you can try to take it as easy as possible. Stress is really bad for this. If your work is too much, could you ask your GP to sign you off? Or ask your work to refer you to an occupational health person to advise on what type of work or how much you could do, without setting yourself back?