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

@Cotswolds10 I had gastric symptoms earlier on but a bit different to yours - lots of GERD, burning sensations, stomach bloating and loose motions. I took omeprazole for a bit which helped with the GERD. I also took a good probiotic (Symprove) which seemed to help - though as always it's impossible to tell if it was this or just things improving over time. I hope it improves soon.

Hi all! Just came across this thread. Anyone that had COVID with their newborn can share the experience? What symptoms the little one had, how bad it was?

I've created this thread if that's better: www.mumsnet.com/Talk/coronavirus/4117846-Newborn-COVID-symptoms?noti=1&utm_source=watchedthreads&utm_medium=email&utm_campaign=2020-02-27&utm_term=Mumsnet%3A+New+message+on+thread+Newborn+COVID+symptoms&rei=1256186#103017652

Thanks!

@fedupofbed I might give Symprove a go too. My stomach is in bits and I’m sure the antibiotics will just make this worse...

Unfortunately the last thing I feel like eating are the old kefir and kimchi combo

@Whatapickle78 I'm still taking it though a bit less regularly now. For those who suspect histamine issues as well, foods like kefir and kimchi are high histamine, as are some probiotics (though not Symprove).

My stomach's not great right now either... too much chocolate!!

Thanks @fedupofbed I remember reading that too. I’ve never noticed a histamine response to kimchi and kefir, I ate a lot of it when going through the summer relapses... but I know it’s has v negative effects for others.

I’ve just ordered some of the ‘Nue’ combined prebiotic and probiotic capsules. I’ll give it a try... be lovely if it gave me the ‘radiant’ skin promised too but I’ll settle for less of a leaky gut initially...

@Samc3 sorry to hear that, must be a worry.
We have had people on their earlier threads who had children with Covid, but no babies or newborns that I can recall. Hope someone comes along with info. You could also look at the Facebook groups for long covid as they may have more members and info.

@Whatapickle78 and Millstone thank you, I will order so Niacin for him to try.
I wish you all the very best x

@fedupofbed Thank you for the advice. I’ll give the symprove a go. My symptoms aren’t like GERD at all so I’m not sure the other meds would help. But I’ll keep researching. Thanks.

On a bit of a downward slope here - tinnitus and fatigue have returned, palpitations and occasional shortness of breath. I think it's the forthcoming arrival of my period that has caused an increase in histamine (compounded by a few slip ups in the diet over Christmas) . Going to ask for mini pill from GP as soon as I can get an appointment to see if I can flatten out these big hormonal swings that are affecting my long covid so much.

Oh no @TiddleTaddleTat sorry to hear that. Hormones play such a big role in all of this, I hope there’s a way of managing the ups and downs a bit better for you with the pill.

I wanted to ask - as someone else on here mentioned that they thought their relapse was caused by encountering the virus again (though not getting infected again - just fighting it off) what are your thoughts on this theory?

This is exactly how this relapse felt for me, no symptoms of cough or chest pain, but full whack resurgence of all of the Covid symptoms that followed. I.e a massive inflammatory/immune response. Could of course have been the ear infection that triggered it but who knows...

Is there any research going on or been published on what responses people have to the virus if they encounter it a second or third time?

Hello all. It's (yet again) been weeks since I last posted on here - luckily I had no trouble finding the new thread.

I have had a couple of fairly bad relapses in the last couple of months - the last one coincided precisely with my December cycle - although usually I feel a relapse of symptoms just before my cycle starts. I was starting to wonder if it was a new infection as the fatigue (which is one of my worst symptoms anyway) was so much worse all of a sudden. But I pulled out of it after about a week to 10 days.

I have continued to have gastro issues which have worsened over the last few months. I am due a colonoscopy and gastroscopy in just over a week so will see what's going on (quite worried about what they might find, and about how the prep might affect me....).

I now have another period which arrived on day 17 of my cycle - although my symptoms have worsened much less with the short cycle. My cycle is all over the place and boobs hurt in various ways pretty much throughout now. No idea what's going on with hormones (? peri?) as my cycle /boobs were a bit off for a few months before the pandemic hit.

I have been pondering the anti histamine diet but am so slim /already underweight it concerns me that I'll lose weight. But am making a few easy tweaks to start with - and will give it a proper go after the colonoscopy. Will also ask the gastro doc about niacin before starting that. It's good to hear it can have a positive effect on fatigue as that's the thing that gets me down the most - I literally don't leave the house most days. I couldn't even pick the kids up from school (5-10 min walk) most of the last 2 months. I am not working (on sabbatical) and can't imagine I will ever feel well enough to work again.

But new year, fresh start, am hopeful to be able to help myself with a few of the things you lovely people have been trying. This is my plan:

• low histamine diet as far as possible
• niacin if docs agree
• see if I can get famotidine prescribed (I have terrible silent reflux so hope gastro doc will agree)
• acupuncture and /or reflexology (if tier system allows it and schools are open....)

Right now I know I need to monitor how much water I drink (not enough), get better at pacing through the day (I tend to feel better in the evening then overdo it, and I stay in bed late in the morning (still there now) so maybe reset my get up/go to bed times a bit).

But I also need to now conserve some energy for the awful bland colonoscopy diet and the hideous prep (picolax) ahead of that dreaded procedure.

It's good to hear that the diet and niacin are working for some of you, and that many of you have continued to see improvements despite some setbacks. When I see that someone has pretty well recovered (in the Facebook group or on here) I feel happy for them but then like I have failed because I'm now at getting on for 10 months with no end in sight. Must try harder with sensible self-care, so hard with kids around though!!

Thanks for keeping the thread going, it helps so much to hear others' experiences.

My GP has said if the gastro stuff is all clear he'll finally refer me to a long covid clinic (assuming it's up and running locally soon). Though I'm not convinced it will help as I have had most major investigations (using DH's private insurance) and can get advice on fatigue and pacing from these threads/groups! But will go with enthusiasm if they will see me (no confirmed test as started in march).

I hope for you all that the Christmas over indulgence wears off soon, the relapse improves, those new to long covid take the advice to rest rest rest (one of my main errors early on was not resting!), that the niacin does some good, that the mini pills bring some relief (maybe I need to ask about this) and the SNRI helps.

Wishing you all the best for 2021 - and thanks for 'listening'! I will check in more regularly from now on xx

Hi everyone,

Hope you all had as good a Christmas as possible.
Welcome to some new members, sorry to have to be part of this club.

Currently sat here flushing/itching from the Niacin, only the second time it’s happened, it generally doesn’t seem to, does it happen for everyone else?

I got my period, but really odd as usual, slight bleed, then nothing for days, then bleed again.

Over indulged at Christmas as was just so sick of being careful all the time, didn’t seem to have a massively drastic affect, although Christmas morning I had some Baileys in my coffee and almost immediately felt a bit dizzy and strange so stopped drinking it, wasn’t expecting that reaction.

Really tired last night then woke at 2 am and was wide awake, unable to get back into a proper sleep, more of the strange almost lucid dreaming, dreaming every night for weeks now and anxious yesterday, so not sure what’s brought that on.

Almost constantly wake with a steaming nose-does anyone else? Plus a very itchy chest at the moment, I just feel all sort of full of allergies?
Still all the same symptoms coming around in their different cycles, steadily less each time, aside from a bad relapse in Oct/Nov, which coincided with a ‘Proper’ period.

Going on for 10 months next week, unbelievable.

I'm back to work (school) Monday, tier 4 area. I am very worried about catching it again. Although I am doing very well my lungs still aren't right and I am soo worried they couldn't cope again.

@TiddleTaddleTat sorry to hear you're struggling a little. Will be really interesting to see what the mini pill does for you - I am interested in trying this too.

@Whatnext2018 I have no scientific evidence on what happens when people re-encounter the virus...but my suspicion is that our immune systems might overreact in encountering any virus. I think I had that before Christmas...not necessarily from covid but from a cold my children had picked up (though I do live in London so am sure I must have had some exposure recently!)

Holding out for news of the Oxford vaccine and hoping they can get on with rolling our vaccines soon. I'm holding on to some hope that it might help us if we have lingering virus in our bodies...

@Whatnext2018
Similar here. I always wake with a streaming nose and itchy eyes. I get an itchy red rash around my bra strap which I think is reaction to the silicone in my bra so have gone back to cotton bras. I feel like I've had a minor cold for days but it could just as well be high histamine - it does seem to die down after taking my first but C and quercetin (on waking) and is nonexistent after first loratidine at 10am

@Kitcat122
That's really hard, I completely understand. For what it's worth if you are not already on Niacin )even a small dose) it might be worth thinking about as - if this NAD+ theory is right (and it's a big if) - it's the deficiency that causes long covid and increases severity of the acute illness

@seriouslynonames
Thanks for coming back to update, lots of what you said rings true for me and I've heard similar things about long covid inducing peri menopause... Have you had any medical input on that aspect? Hope your colonoscopy goes ok and you can take some time to recover afterwards x

@givemeanother thank you, it was me that asked that question about what triggers the big relapses... @Whatnext2018 has a similar name

Yes, it could be any virus I expect. I think I remember reading that this was a feature of CFS too but I may be mistaken.

All fingers crossed for the vaccine. I hope too it can help root out any lingering Covid bugs...

@Whatapickle78 oops sorry - I even double checked before posting who had asked the question. I blame long covid!!

I also remember reading an anecdote about a paramedic who contacted SARS1 and said for the next two years his immune system overreacted to any bug he came up against...

@givemeanother haha yes that anecdote came from me! He treated me in an out of hours clinic in Cornwall last time I had a relapse like this. I had a skin infection behind my ear which went haywire causing exactly the symptoms I have now throughout my body.

He was the first (and since then, only) medically trained person who has suggested that this is what is helping to trigger relapses. I’d love to see some proper research on this (perhaps the Slack team are on it) as he said that this was a known phenomena with SARS patients like himself.
I feel like even knowing that this is a genuine, proven ‘thing’ would help me feel less crazy

Thank you for replies i got the other day about my adult daughter who has been diagnosed with long Covid.
111 precribed another inhaler for her on Boxing Day, she spoke to GP today and he has prescribed oral steroids as well and is going to speak to respirtory clinic at hospital.

5 days until Aunt Flo arrives, short of breath from standing up, shaky and dropping things. Pretty annoyed to be honest. I got a letter rejecting my pip this morning, even though I was expecting to have to appeal I think I’m pretty peed off.I’m struggling to breathe from hanging up the washing, then I need a long sit down for an hour but yeah, I’m not disabled.

@LetsBeSensible that sounds so tough ... do you usually feel better soon after AF?

I'm feeling slightly better today, think that the cause of my little relapse was testing if green tea was ok (turns out it is not!!)

Hi all- just checking in to see how you all are. I have the same thing as you all- relapses the week before my period every month. Spent most of the 4 days until Boxing Day in bed with the muscle pain abs weakness, breathlessness, headache and weird anxiety& nausea that makes up my relapses. Have had a good few months since the big relapse in September so gutting to take such a step back. Realise that stress triggers, as does cheese, chocolate and red wine when I'm pre menstrual. Triggers horrible adrenaline type attacks . Also live in absolute terror of reinfection.

I’ve just realised from this that my relapse (although I’d only been ‘well’ for 5 days) coincided with the days before AF arrived. I’ll have to monitor this.
What are people finding most helpful for the aches and pains? My legs and arms are particularly bad today.
I’m only 6 weeks post positive test, what support were you getting from the GP if any at this stage? I’ve been given steroid inhalers with the instructions to use them religiously but no plans for review. I’ve tried to explain my symptoms and concerns but feel a bit fobbed off. My heart rate has been doubling going upstairs to near 150 and it feels like it will burst out my chest and I feel my pulse strongly in my head at this time, my resting heart rate when well is around 63. GP just said it’s the post-Covid syndrome but nothing else.

@Indecisive12 welcome. At 6 weeks after infection for many of us it was start of May, we were fully locked down and we were chattering here wondering why we weren’t getting better after two weeks. Around that time a GP told me I mustn’t have had covid as it goes by 14 days. Long covid hadn’t even been named. The c19recoveryawareness website was set up and it was just one page in the US saying- we think there’s a lot of us not getting better.
Easiest way to get a lot of tips on treatment etc is to joint the long covid Facebook group as they have tabs you can jump to.
@TiddleTaddleTat I feel worse before AF, so not “better” after, just as rough as usual. Equally I can feel just as bad at any time. I wiped all that data I’d collected for the last 3 months 😰

Hello Indecisive12 I got very little support from my GP - in fact, I only finally got checked over after five weeks when I still had excruciating chest pain and as LetsBeSensible says, long covid was not a diagnosis at that point. Looking back, at six weeks, I was still very ill and it took another few months for this to subside in any meaningful way (sorry). So I got no support, not even an inhaler - although antibiotics about week ten did make a small difference. I started to improve about week 14 with relapses. Not what you want to hear, but I did feel that if someone had told me it would take six months plus that would have been easier than thinking (as we were told) it was a two week illness. I still get the aches and pains at times if I have been active for a couple of hours and I then need to rest for a bit, and I am fatigued at the end of the day. I sort of gave up around 4-5 months trying to get any medical help, although I should contact my GP as I had quite a relapse a couple of weeks ago. I did get naproxen for the chest pain but it did not make much difference.

Broadly speaking, I find I feel better if I remember to take my multivitamin, vitamin d and iron. People on here and elsewhere have probably been doing a lot more than me along these lines to see what works, but I have a full time job (luckily from home) and two DC, and am a single parent, so I have just muddled through. I am now doing a low histamine diet after coming out in hives and realising that my diet was quite high in histamine - this seems to help.

To monitor my heart rate, I got a FitBit with a heart rate monitor on it. I guess if you know your HR from going up stairs, you have one already? There was a formula somewhere from an ME group which I found useful as to what you should keep your heart rate under. So if mine went above that, I would rest. So yes, after going up the stairs, rest until it settles. Things which used to send my heart rate up and exhaust me were having a shower (exhausting), and ironing (double exhausting). DD who also had covid was the same and we figured it was because you move your whole body when showering. It really is a case of just listening to your body and resting when you need to. Of course this was practically impossible for me, although my job is a desk job luckily, and so even if you cannot do that, rest as much as possible. At six weeks I think things could still improve more quickly, you are not really in the ‘long covid’ phase yet - my optician started to improve after seven weeks so fingers crossed you will too.