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

Link to last thread:

Covid lungs thread 18 weeks plus - thread 2 www.mumsnet.com/Talk/coronavirus/4031285-Covid-lungs-thread-18-weeks-plus-thread-2

@AndsLee @Crayfishforyou @Ernieshere @Fishflakes @givemeanother @godhelpusall @KatySun @LetsBeSensible @Lightsabre @Meercatmama @MillStone @Norugratsatall @Kitcat122 @Moodgie @Porcupineinwaiting @TiddleTaddleTat @Whatapickle78 @Whatnext2018 hi all! I know some of you don't post so much any more which I hope is a GOOD THING and that you're well on the way to recovery! We always like good news here! Sorry to those who are still struggling.... And sorry if I've missed people. xx

Thank you for the new thread @fedupofbed
I’m going to keep checking in. I remember when I was really poorly that I got a lot of hope when people began to recover and resume normal life.
I am so much better than I was even a month ago. I’m now just impatient to get back to normal.
I’ve been doing ballet and yoga again, no strength or cardio exercise yet. Yet.
It will happen, I know it now.

I am very tired and hungover today but I’m not doing too bad at all.
I’ve also been given a puppy so I’m not moping about the house feeling trapped. I’m now the proud owner of several thousand puppy pictures on my phone.
Christmas can go bollocks, I’m going to eat a frozen pizza and play with the pup.

@fedupofbed thanks for the new thread 🙂

@fedupofbed thank you so much for the new thread.

@Crayfishforyou that's brilliant you're feeling better. Gives us hope! If you were to pick the main things that helped you what were they?

@fedupofbed thanks for the new thread
Feeling a bit iffy here. Felt good yesterday so I'm putting it down to testing out possible histamine foods. Had some homemade gluten free focaccia (containing yeast) and now feeling highly anxious, increase in tinnitus and fatigue. I guess 'my histamine bucket is overflowing'

@givemeanother
I stopped trying to push through doing anything. The housework simply didn’t get done.
I took rehydration sachets every morning
I took magnesium and zinc
I started meditating
I took an antihistamine every day, it really helped with the congestion and headaches
When my head felt as though it had nail bombs going off in it I took Sudafed nasal spray.
I lay down. All. The. Time.
I stopped having any caffeine and alcohol.
I realised it’s a marathon and not a sprint. And made my peace with that.
Take probiotics.
Drink two litres of water a day. You can have other drinks but they don’t count towards your water intake. I got a bottle to measure it properly.
I’m between up to 6 and 8 thousand steps a day now, four months ago that wasn’t even 500.
I’m on beta blockers for tachycardia which have helped. And sertraline which has helped to calm my system down.

Thanks @Crayfishforyou that's interesting. I think you have different symptoms to me...I'm more gastro related plus fatigue. I think I am worse if drinking alcohol and caffeine...I generally don't have either but at the weekends sometimes treat myself and start the week, like today, feeling cruddy.

I also think if I took time off work it would help. I'd been considering that in the new year but now thinking the kids will be off school and it won't be restful at all!!

@Crayfishforyou the sertaline is esp interesting as one of the theories is that long covid depletes serotonin in the body...that then leads to mast cells being released and a histamine intolerance. Taking an SSRI like sertaline has the potential to reverse that I guess...

Are you still off alcohol and caffeine or is there hope for that too?!

@givemeanother
I am hungover this morning.... I had a zoom Christmas dinner with my extended family last night

Thanks for the tag and the new thread @fedupofbed
Hope you’re all well. This week is going quite well for me so far (apart from the tier/Xmas disaster)

Hello all and thanks for tagging me. Good to hear from some familiar names.

I'm still breathless and stiff torsoed but just in touch with the breathing physio team today. This will take place online so not sure how that will work. No sign of any long Covid clinic in SE London but there are a few now in the big London hospitals.

Results should be through soon for the multiple organ MRI scans I had through the Perspectum project. I'm hoping they'll shed some light on what has happened to me. Tired still but managing 3.5 days at work now - nothing else though really.

Terrified of this new strain and desperate to get vaccinated.

@Crayfishforyou a hangover feels a long way away. Can't wait though!

@Lightsabre I'm SE London too...there is meant to be a long covid clinic at Kings College, not sure if it's open yet though...

Thank you for tagging @fedupofbed.

Just to share my experience. When I asked my GP last month about the long Covid clinics, she said she didn’t want to seem like she thinks my symptoms are nothing but it would be for people who were hospitalised and way worse than me.

Hi everyone. @Whatapickle78 just replying to your message on the last thread - thank you for thinking of me and wow, sounds like the niacin's having an effect. Jury's still out for me 🤨.

@Crayfishforyou you made me giggle. Sounds like you're on the up too - enjoy your puppy and pizza! I'm still pondering about starting sertraline... I want to get Christmas out of the way first as I've read it can make you feel a bit worse before feeling better.

@LetsBeSensible great you've had a good week!

@Lightsabre I had breathing physio online too. She watched me breathe, then talked me through dysfunctional breathing and gave me some exercises to do. Keep us posted about your MRI scan. I never did this, partly because of the distance involved and partly because it made me feel anxious.

@TiddleTaddleTat sorry some of your symptoms have got worse - I guess at least you know there's a clear correlation between what you eat and symptoms. Do the DAO supplements help?

@Moodgie ah I'm sorry, that's not very supportive of your GP. I do wonder how useful these clinics will be though...

Nothing much to report here. I had a fantastic acupuncture session yesterday which really lifted me but things are as normal again today with the fatigue and high heart rate. I'm beginning to wonder about the whole histamine thing for me as the diet, antihistamines and supplements are having no effect so far - I'll keep it up for a bit longer though.

@fedupofbed how long have you been on the low histamine diet? It took about 4 weeks for me to see an effect, though I wasn't completely compliant at the start.

I thought diet would be a smaller part of the puzzle but it seems like it really is pretty key for me. Sugar , alcohol , high histamine foods are all off the menu for the foreseeable here.

@fedupofbed I'm not sure about the DAO - I took them the other day and still have had increase in symptoms since so I guess I would need to keep the histamine intake lower to see.

Hello, I have not posted on these threads for a long time, but I recognise some names.
It is funny that you mention histamine intolerance as a couple of weeks ago I came out in hives all over, with no apparent trigger. So I started a low histamine diet. Not sure it has made much difference (except to the hives which have gone, yay!). I still have chest pain (occasional shooting sharp pains which make it difficult to breathe momentarily and then pain which is more like costochondritis), still quite fatigued but I seem to have fewer headaches (hope I am not speaking too soon on that front!).

I have not had any more medical support since Autumn as I got fed up of just feeling dismissed really but I probably do need to speak to my doctor at some point.

I hope you are all seeing at least some improvement, and looking forward to catching up on how you are doing.

@fedupofbed I felt quite nauseous the first week of sertraline, but I had bouts of feeling sick back then anyway.

I am now plunged into scary thoughts again, my dad has been in contact with someone who has tested positive and she has to isolate for 10 days. I can’t bear for this nightmare to enter our lives again. I know the chances are slim, but what if my hangover isn’t a hangover and it’s actually covid starting all over again? What if my dd isn’t being a dick because she’s tired and overexcited, but because she’s getting ill again? I can’t bear to have to go and check her breathing through the night again, to try and sleep whilst being propped upright to help me breathe. I dread waking up to my heart racing and gasping for breath. The chest pain and dizziness.
I know I’m probably overreacting, but I’m scared all over again.

Still, at least it means my toxic in laws can’t come round in Christmas Day. I will actually have a really nice day now without having to forcefully explain, once again, that it isn’t just feeling tired. And I will not be pushing myself a little bit further each day.

Thanks @givemeanother but unfortunately I'm in a different health trust so apparently can't access the Kings/central London clinics. Our only long Covid clinic is this respiratory one. I spoke to my GP again yesterday and she's basically admitted there's still a lot they don't know which made me feel sad - I feel like my life's been written off at 53

She did suggest a baby aspirin but to watch out for stomach irritation issues.

@Crayfishforyou how are you feeling today? Hope you slept okay. It's hard not to be plunged back into anxiety with all the horrible news at the moment.

I emailed my GP today, just to double check my quantities of Niacin and antihistamines. He said that he's finally got a Long Covid clinic to refer me to... but he can't make it work on his system yet... teething troubles!

@TiddleTaddleTat I'll keep on trying... it's been about a month lower histamine and 3 weeks on Niacin 🤨.

Talking of this protocol Gez Medinger has released another video suggesting that it's helping many people.

I’ve calmed down. It doesn’t help I’m out of meds completely. I’m on subscription service, they’ve posted them last week but they still aren’t here.
@fedupofbed I hope you get referred quickly, my local service have been so helpful and reassuring

@fedupofbed Thanks so much for the tag and new thread 💓
Ticking along here, fairly bad end of Oct/November (I think..! So hard to keep track) started the niacin a couple of weeks ago, still on only 100 per day as a little worried to take more..but..I think I have seen definite improvement with it, so worried to ever say that, in case I get worse. Actually managed a few days with zero symptoms..then some came back, sore in chest/heart area, slight dizziness etc and lots of waking up with a very runny nose recently, but a fair few okay days.
Very heavy period last month, which I was actually glad of, but now around day 40 and no sign of it 🤷🏻‍♀️So I’m not back in a normal rhythm with it yet.
Been stupidly eating a lot of sugar recently with Christmas things, so could be causing the symptoms. Still not drank yet..since April, perhaps the longest I’ve ever not had alcohol since I was a teen 😂I did feel sad when doing the Christmas food shop and put back a couple of bottles of Baileys and Prosecco, just so worried of a repeat of the terrible night I had at Easter after a glass of wine, couldn’t bear to go through that at Christmas, so it’s a sober one for the first one.
My symptoms seem to still be following that strange cycle but decreasing each cycle.
Someone asked a couple of weeks ago about feeling down etc, I definitely suffer from that occasionally and I believe mine is caused by the illness, not worry/feeling down ‘About’ the illness. I have the odd day of everything feeling completely hopeless and as if there’s no point in anything. I’ve never had anything like that before, it’s quite a scary place to be, thankfully it passes within the day generally. Really strange, I also try not to think about the worst times of the illness when the anxiety was petrifying, some have spoken of having ptsd from this. It really is the strangest thing I’ve encountered.
Happy to see some are recovering really well and for others sending 💐 for this long journey.

Is anyone worried about the vaccine?

I am, I'm not sure why, I think I am scared of becoming breathless again, as the flu jab made me feel 'achey' for 2 days.

@Ernieshere I'm not worried about the vaccine. I think I briefly was..,but it's far outweighed by fear of getting covid again and hope that having some antibodies might kick some symptoms to the kerb.

@Crayfishforyou are you out of your SSRI? That will def not be good for the anxiety, and the news at the moment is not good for anyone's mental health. Hope you are feeling a bit better today...I'm sure if you were exposed to covid again you wouldn't be as badly affected. Fingers crossed anyway!

@Crayfishforyou I had tried a subscription service in the past- until I urgently needed antibiotics and the script went wherever for them to make them up and post them....no. Back to my local pharmacy, much easier and they will deliver. They will also “lend” a few days tablets in a pinch.
If you stop sertraline suddenly the first day or two is ok, then I got stomach issues and toilet rush and a weird head and body “judder” by day 3-4. It can be horrible (although I’ve been on them years and years so probably quite “reliant” honestly I would bite my last few in half rather than go cold turkey, it’s not nice. Not any worse than we’ve been through, mind.
If I overdo it and get tired, I still cough and get breathless. Fatigue is still my biggest problem.