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Long Covid support thread

744 replies

fedupofbed · 21/12/2020 11:26

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

OP posts:
NovemberR · 23/12/2020 00:58

Can I join in? I suspect I have long Covid. I'm roughly ten week from testing positive and still utterly exhausted most days. Also got aching bones and backache. Brain feels slightly fuzzy and concentrating on anything is tiring.

GP says post viral fatigue and has signed me off work. Is it just a question of waiting to feel better or can I help myself in any way? Any advice welcome.

Crayfishforyou · 23/12/2020 07:28

Hello @NovemberR, I’m glad your GP has signed you off. The only way to kick this thing is to do as little as possible. Know your limits and do half of it.
Take probiotics, rehydration salts and drink at least 2 litres of water a day not including tea etc.
Do not push yourself or exert yourself, even if you feel fine.

Thank you @LetsBeSensible. I didn’t seem to have ill effects coming off them. They arrived yesterday, and my system seems to have forgotten about them as I felt horribly sick after taking it. I am on the lowest possible dose. I probably don’t need them now, I don’t get the feelings of doom or days spent in shuddering panic anymore. But the dr said stay on them until spring, it’s not good to come off it in the depths of winter.

lovelemoncurd · 23/12/2020 07:40

I caught Covid in March. Have suffered long Covid. Most symptoms stopped in August. The extreme fatigue, chest pain, head fog.I can't even truly recall what awful symptoms I had now. I'm left with a slight cough at times. Hang in there they will disappear x

Whatnext2018 · 23/12/2020 09:35

Spoke to soon..again.
Barely slept and woke up today with that familiar, strange hungover feeling..a bit sick, weak, headache, runny nose and not with it. Wondering if the reason will be period arriving, really do notice the difference now hugely between the good and bad days.
Feeling a bit paranoid about re infection after dp’s workmate tested positive, I feel similar to the past bad days so I’m hoping is just that.
Dp working until late Xmas Eve afternoon, I have so many Christmas bits to do with my toddler, but I’d rather just lie down!

Whatnext2018 · 23/12/2020 09:39

@lovelemoncurd Glad you’ve come through the other side 💐 that’s reassuring to know. March here also for me, can’t believe it’s been this long, I remember thinking 6 months and how hard that would be, didn’t envision would still be experiencing this at this point.

TiddleTaddleTat · 23/12/2020 11:55

Hi everyone
@Whatnext2018 Im similar... saw a definite improvement with niacin, then sort of plateaued . Then I had some serious stress at the same time as my period and felt rubbish for a couple of days. The fatigue has largely subsided now and I'm able to do a little more - yesterday I walked about four times as much in one trip than I have in a month. Probably a 3-4 min walk, standing, sitting, then another 3-4 mins. I know this sounds like nothing but it's pretty huge for me. Felt a bit more palpitations and fatigue yesterday evening and maybe slightly more this morning but nothing like what I've had before.

@lovelemoncurd that is great news! Like anything I suppose there's a variation - some will just get better in time naturally , within 6 months, others have associated issues that persist longer, some have previously unidentified conditions that are worsened (eg MCAS, or underlying vit/min deficiencies), some have organ damage, propensity to immunity... etc.

@fedupofbed thanks for posting the latest video by Gez Medinger. Its exciting stuff. I watched it quite quickly and probably need to watch again to take it all in. I may have missed it but was there a comparison of the niacin group and the diet group? Both seemed to be effective in comparison to the control group, but what about both? I'm basically looking for ways to get out of this dull dull dull diet, but my attempts to stray have made me worse. If I hadn't drank a small amount of gin and ate various prohibited treats the other day I'd likely be feeling a lot better than I currently am.

Antihistamines still working well. I'm taking 2 loratidine daily. Spoke to PoTS nurse and they can prescribe H2 blockers as they recognise MCAS as a cause, but want me to have a clear echocardiogram first (scheduled for Late Jan).

Wondering about trying a different GP as the last one had never heard of MCAS... I find myself getting quite symptomatic in between antihistamine doses.

I'm still on 300mg daily niacin, anyone else at this level? Interested to hear what you think of it.

SunLion · 23/12/2020 12:00

My sister wrote this poem to help raise awareness about long COVID, please share:

To my Long Covid family...

'Twas The Night(mare!) Before Christmas

'Twas the night before Christmas and all through the house
A creature was stirring, but it wasn't a mouse.

'Twas an insomniac 'Long Hauler' with a strange sense of smell:
"What is it that's burning? I just cannot tell..."

The presents were stuffed in a corner, not wrapped.
"Oh, I tried to wrap them but I cried and collapsed."

The children were nestled all snug in their beds,
While their parents lay awake with a sense of dread.

'Cos Mama is poorly; she's really not well
And when she'll get better, there's no way to tell.

And it's not just Mama; there are thousands like her.
Living this hell and not being heard.

High on insomnia, drunk with fatigue,
We're finding it hard that we're not being believed.

As we shake and we ache and try to get by,
Whilst we sweat and we stumble and try not to cry.

Last Christmas we laughed, we hugged and we drank.
This year it's different; we have Covid to thank.

We used to be runners, training and racing.
Now we are on monitors, checking and 'pacing'.

And it's really so hard for we want to be busy,
But just walking upstairs leaves us breathless and dizzy.

We have chest pains, numbness and nasal congestion,
Itchy eyes, headaches and weird palpitations.

Tests reveal scarred lungs, blood clots, MCAS and POTS.
Others struggle with itching. hives and chicken pox spots.

With so many symptoms, advice we seek
As our 'family' grows by hundreds a week.

Tinnitus, 'whooshing' and hearing so painful,
We're told we're fine when we're not - it's horrifically shameful.

We stammer and stumble and our limbs are so weak.
We look in alarm at our wasting physiques.

And the brain fog! What is this?? It's really absurd!
We try to speak and we can't find the words.

So this Christmas it's Easter and reindeer are dolphins,
Ferrero Rocher are frangipani (I know!) and robins are puffins!

And a chair is...? We sigh and just point. It's so bad!
We've got to keep laughing or we'll all go quite mad!

Our brains won't work, we're worried about our hearts,
We can't taste our food and we can't trust our farts.

We're losing our hair. And our teeth. So attractive!
Yet, we're hanging on in there and being pro-active.

We're ditching certain foods and upping healthy habits.
Oximeters and blood pressure monitors are our most-used
gadgets.

Yep, we have Long Covid; this is our plight.
And I thank you all as I (briefly!) bed down tonight.

For your supportive comments, research and shared fears
During this, truly, toughest of years.

For your humour and your tales of success:
"I managed a shower AND I got dressed."

"I walked to collect my kids on the last day of school."
"I did a fart and I DIDN'T poo through!"

Our successes sound tiny (apart from that last one!) but to us they are huge,
Because they give us all hope that we will pull through.

"Merry Christmas to all" just doesn't sound right
When we've lost loved ones, we're struggling and feeling so shite.

So to you all I send love. There are glimmers of hope,
As Long Covid clinics open and we find more ways to cope.

In a time of great crisis, we've found strength to fight.
And I can't thank you enough. May you sleep well tonight. xxx

(Written by Penny on 19/12/2020, 47, fit and healthy mum of three before a 'mild' case of Covid-19 in July/August 2020. This is in no way intended to trivialise the utter devastation caused by this virus to so many families. I will be going to see the Christmas lights in a wheelchair this year and have 37 ongoing symptoms. I consider myself to be one of the lucky ones.)

fedupofbed · 23/12/2020 12:15

@lovelemoncurd lovely to hear that you're through it!

@NovemberR sorry to hear you're joining us with those all so familiar symptoms. There are so many theories, suggestions and tips as to what might help out there (in previous threads here, Facebook, Slack, etc) but I think the best advice seems to be rest, rest and more rest.

@Whatnext2018 sorry you're not having a great day. Yes I'm with you re the no alcohol Christmas - can't believe I've been dry since February! I have some alcohol free fizzy wine instead this year.

My heart rate is still high but my fatigue levels are a bit better today and yesterday... incremental though so daren't get too excited. Hard to tell if it's the diet, supplements, latest acupuncture session or just time and pacing 🤷🏼‍♀️. I'll just keep going with it all.

I've just started my period again today - well I think it is, but it's very light and I didn't feel myself ovulating this month. Only 3-4 weeks since the last one. So I'm starting the mini pill today - based on a theory that I have some kind of histamine/oestrogen surge going on and that increasing progesterone may level things out (before all this I had very infrequent periods and am peri menopausal).

OP posts:
fedupofbed · 23/12/2020 12:25

Sorry I missed the last couple of posts before mine. @SunLion what a fantastic poem, thank you for sharing. Yup that just really really sums it up for me. Your sister is very talented! It's so hard isn't it? Love to you both this Christmas 🎄 💐.

@TiddleTaddleTat wonderful about your extra walking, yes I recognise that is a huge achievement!

OP posts:
NovemberR · 23/12/2020 20:13

Many thanks folks.

Rest seems to be the consensus!

MillStone · 24/12/2020 11:11

Hello, hope everyone's feeling okay and will able to enjoy some of the festive period.

No news here except that I've bitten the bullet and decided to give Duloxitine (SNRI) a go. My Doc thinks it could really help -- and in fairness he has a glowing record for administering advice. I only started them this morning but I'm feeling pretty positive about it despite my initial reluctance.

With my pounding heart (strong not fast) that I have been whaling on about for sometime ... I'm interested to learn what effect the SNRIs might have. I read some time ago that an imbalance of norepinephrine could be partly responsible(?).

Season's greetings all and here's to 2021, a year of healing, growth and stability xxx

givemeanother · 24/12/2020 12:55

Happy Christmas everyone. Hope you're enjoying and surviving the run up.

@TiddleTaddleTat I was on 300mg niacin...I was taking it as two lots of 150mg morning and evening. I've just dropped down to 200mg again split across two doses as I've had an upset stomach and want to check it's not the reason. It's definitely working for me energy wise though...and I still sometimes get the flush on that amount.

That being said my stomach is not being good at the moment. I am happy to try low histamine but think I might need a total reset...someone recommended the autoimmune protocol which I might look into post Christmas. Right now just trying to avoid the dairy, seafood and smoked fish which seems to be much of our Christmas food!

Wish someone could run a blood test and tell me what I could safely eat...

givemeanother · 24/12/2020 12:57

@MillStone please do keep us posted on the SNRIs...am very interested in this as a potential add on...I don't think I suffer cardiac symptoms anymore but am interested in whether I need more serratonin in gut to help...

TiddleTaddleTat · 24/12/2020 15:13

@MillStone that's great to hear that you have trust in your GP and you are able to try something new. Let us know how you get on with the SNRI - I guess if the NAD+ theory holds, then this would help to temporarily replace the serotonin that is used up by the body trying to make its own NAD+, am I on the right lines?
I'm feeling a bit frustrated with my naturopath, GP, and PoTS nurse, none of whom seem to have come up with anything that's worked better than the diet, niacin and antihistamines I have self prescribed based on my own reading and time on long covid social media groups! It's quite extraordinary really.
Feeling quite grumpy about all the self denial of Christmas food and drink. However I'm now feeling back to how I was, five days after my chocolate and gin indulgences... I won't be touching them again for some time.

fedupofbed · 24/12/2020 16:46

Hi everyone.

@MillStone I hope the duloxitine helps - let us know how it goes.

@TiddleTaddleTat I completely get your frustration. It's kind of up to us really isn't? We have to be our own health advocates. Whilst it's good that the diet is working for you, yes it's very hard, especially at this time of year. I've never managed to be as strict as you... I will be indulging with chocolate tomorrow and taking lots of DAO supplements.

I had a very interesting follow up consultation with the immunologist/ ME CFS consultant this morning. He's got years and years' experience of ME so it must be a very interesting time for him with all the spotlight on Long Covid. He is curious and open minded and we talked through all my meds and supplements. He says to keep going with the niacin stack and the Acyclovir. He suggested a few other things that I'll post after Christmas when I get his letter. The main thing though is that he's going to prescribe me LDN, which I've read about on other forums.

His parting words were to stay calm and positive. He really believes that this has an impact on our recovery... as do I, but it's hard sometimes! Wishing everyone a calm, positive, magical Christmas. xx

OP posts:
MillStone · 24/12/2020 17:01

@givemeanother of course I will update.

Sounds really positive @fedupofbed ! I totally get the staying positive vibe. That’s one of the reasons I’m trying the SNRIs. However when people keep telling you to stay positive because it helps recovery... you get anxious because you often feel far from it and think it’s hindering progress — well I do! I hope you enjoy your chocolate!!

@TiddleTaddleTat I know what you mean about external help. I think we’re more clued up - in regards to Long Covid developments - than most of those helping us.

I don’t think my doc was thinking about NAD+ when he prescribed. I did mention that to home a few weeks ago but didn’t really get a response as such. I think it’s a means of trying to boost my mental state to help my homeostasis.

TiddleTaddleTat · 24/12/2020 18:33

@MillStone @fedupofbed yes it really is up to us... it's remarkable that according to the most recent Gez Medinger film the most effective treatments are diet and niacin... possibly the cheapest and simplest of all the different things many of us have tried. I've spent an eye watering amount on the naturopath and supplements . I don't regret it but always struggled with the idea of it being stress related , linked to havjng a type A personality etc... I don't know maybe that still describes me but... it's been very validating to get to grips with what really might be going on.
I think the reason I'm so strict with the diet is that I saw such a massive impact of that in combination with the niacin and antihistamines, and deteriorated with just minor deviations into eating sugar etc, that I can't bear to do anything that makes me feel worse. I'm glad you are feeling a little less fatigued fedupofbed, hopefully it'll continue to improve .

Tomcullenisahero · 24/12/2020 23:05

This is a great thread, it is suspected that my DH has Long Covid so it's great to hear first hand experiences as we know no one who has gone through this.
We're in Northern Ireland where there are no clinics for support so he's just been Googling and the GP admitted they don't know much.

Keepdistance · 24/12/2020 23:54

Ive increased my calcium. Hoping it might help with my
Insomnia
Pins and needles in hands
Muscle twitches.

Whatapickle78 · 25/12/2020 12:22

Hi everyone
Hope you’re all having a good Christmas despite everything!
I’m having either a massive relapse here triggered by what I think was another ear infection (same thing happened to me in July) OR I have Covid. I’ve just been for a test and now in bed with the full works.
Fingers crossed it is ‘just’ a relapse.
Given this....
I’d really like to increase my niacin dose. I’ve just been on 100mg for a week.
Can anyone tell me how you’re supposed to increase it please?
Thanks so much! Xx

Kitcat122 · 25/12/2020 18:05

Merry Christmas everyone. I am generally doing very well. However, just had a nasty cold with a cough which has brought my chest pain back with slight breathlessness. This happened before when I had a cold but cleared up quickly so hopefully this time will be the same. Had my Post Covid clinic appointment in January cancelled. Not really surprised as we are tier 4 so probably people in more dire need than me. Sending positive healing to everyone. Xx

TiddleTaddleTat · 25/12/2020 19:31

@Whatapickle78 sorry to hear about feeling rough. How did you get up to 100mg? I'd do the same again - either increase by 100mg at a time or in smaller increments if you can. I just went up to 300mg by taking additional 100mg tablets, fwiw.
Happy Christmas all !

Whatapickle78 · 25/12/2020 20:36

Thanks @TiddleTaddleTat - I didn’t realise you could just take it all at once. I thought you might have to stagger the doses somehow ...

I started on 100 as didn’t realise you could buy 50’s. I might do 100 in AM and 100 in PM and see what happens. I’m hoping that if this is Covid again, then at least this might protect me from clots too.

The niacin was having a great effect on my fatigue levels until I suddenly got ill again.... 😩 gah

Hope everyone else is doing ok xxx

TiddleTaddleTat · 25/12/2020 20:46

@Whatapickle78 how frustrating. I really hope it's just a relapse.
Bear in mind that you might flush more with increasing the dose by as much as 100mg, it has been fine for me but worth bearing in mind.
Make sure you're taking vitamin D and C if you have access to it too, both important if you have been reinfected

Whatapickle78 · 25/12/2020 21:35

@TiddleTaddleTat I’m on it with the D and C Smile
Yes, I have had flushing with 100mg but actually didn’t mind it too much. I think it increased the placebo effect that something must be working!

Thanks for the advice and I hope you start to see more upwards improvements with it too xx

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