Covid lungs thread 18 weeks plus - thread 2

[LetsBeSensible]

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

Hi @Crayfishforyou 👋🏻 great to hear from you, and glad you're getting good care. Yes, what a crazy long journey, who'd have thought? Hope your relapse passes quickly and keep improving 💪.

Hi @Crayfishforyou good to hear you’re getting some good care and good news about your heart.

You’re in Sheffield too aren’t you?

I’m under the CFS service too as a Long Covid patient. They’re really nice 👍🏽

@MillStone they are nice aren’t they? Really understanding and don’t make me feel like an anxious pathetic wreck.
I’m glad you’re seeing them too. They’ve been really helpful and reassuring

@Crayfishforyou glad you are getting support from the CFs clinic. Have they referred you to the POTS clinic with those heart rate readings? It's a good clinic in Sheffield under Dr West and Dr Sahu and I know they are seeing lots of long covid patients (often getting dx either OI or PoTS)

@TiddleTaddleTat no we decided not to, it’s mainly controlled pretty well with beta blockers and they are confident it will settle in time.
Over the summer it went to over 200 when I was just lying down, it’s nowhere near that bad now. Even without beta blockers

@Crayfishforyou fair enough, as long as you're getting support and it seems like they know their stuff. Good to hear your readings are lower now, mine have gradually settled but I've found addressing it as MCAS-triggered has helped the most. I do still get a flare in PoTS symptoms if I get really stressed, sleep badly, or during my period though.

The NICE guidelines for Long Covid have been released. A bit late for us but reassuring that no one will have to go through what we did in the early days, and that a support structure is in place.

www.nice.org.uk/guidance/ng188/resources/covid19-rapid-guideline-managing-the-longterm-effects-of-covid19-pdf-66142028400325

Also they're not all up and running yet but here is a full list of all the Long Covid clinics being rolled out.

www.england.nhs.uk/2020/12/long-covid-patients-to-get-help-at-more-than-60-clinics/

@fedupofbed thanks for sharing, good to see some progress on this.
Feeling the fatigue today, I did overdo it in the last few days (trying to finish up work for Christmas) so effort was cognitive rather than physical, but I didn't sleep well and feel really drained.
Hopeful it'll pass quickly.
Getting royally fed up of this diet though.
I've done a few food challenges and dairy seems to be OK but almonds and eggs are both iffy. Both histamine liberators.
Going to keep testing eggs over several days and try and keep rest of diet strict to establish if i can tolerate small amounts.
My naturopath likened it to a 'crash' diet, which often don't work because it is difficult to remain complaint over a long period. It makes me miserable too, so there has to be balance. Fortunately I've found increasing the quercetin and vit C has helped a lot with many symptoms

Ah @TiddleTaddleTat you did mention you might be overdoing it. Yes hopefully it will pass quickly now that you're on a general upward trajectory. I'm sorry about the diet too... I guess the incentive though is that it really does seem to work for you? Also do the DAO supplements negate the effect at all? Or is it different because they're histamine releasing rather than high histamine?

I'm still not absolutely sure that my symptoms are MCAS related but I'll keep at the diet a while longer. I have swapped cows milk for almond milk but now questioning this as a substitute. So complicated 🤯.

I'm tucking into a curry tonight with a DAO appetiser 😏.

Hi all - I’m 5 weeks past positive test and I’m very up and down. Today I feel I’ve totally overdone it this week after a stressful week at work and I’m feeling exhausted, aching and my throat is tickling again/chest feels weird. Some days I feel much better. Is this normal??

@Fedupofitnow876 yes and that's a great sign that you are having better days. You're still so early on since having COVID, I would try and prioritise rest as much as possible even on good days (especially on good days)

@fedupofbed I did the same with almond milk... and have eaten almond butter daily as an alternative to peanut butter as I thought it was ok... but still improved a lot during that time. I've found coconut milk to be the 'safest' option, there's a brand called Plenish that do a coconut milk with no fillers - just coconut, water, rice milk. Very tasty too.
I'm going off the almonds for a few days while I work out if eggs are ok.
Don't know about whether DAO is effective with these but suspect it would help break down the histamine anyway?
Very jealous of your curry, it's my favourite thing but haven't had any spice, tomatoes etc for aaaages. Might have to make a curry over the Christmas period and stuff the consequences.

Just worked out that my mini relapse is due to ovulation. Interesting that I've also noticed the health metrics on my Fitbit usually have a much higher HRV and breaths per minute prior to my period and during ovulation. Maybe due to MCAS flaring at that time?

@TiddleTaddleTat

Ovulation affects me greatly, and interestingly after getting Glandular Fever 4 years ago & then diagnosed with M.E/CFS I have suffered 'period flu' every month since the Glandular Fever.

Severe sore throat, shivers, skin hurts to touch, insomnia & aching muscles every month around ovulation.

I kept thinking it would go and maybe it was post natal. I think it is post viral & hormonal looking back and how Covid has affected me and made it 100 times worse.

Anyway I have just tried HRT for 6 weeks, but I decided to give it up, as it was making me more tearful, and I had more headaches than usual, and jabbing pains in my stomach.

My G.P agrees it may have been a little bit early for me to go on HRT, but it was worth a try, so I asked to go on the Minipill in order to get a constant flow of Progesterone.

So far I have slept 10 hours a night, the Minipill should stop ovulation (fingers crossed) as this is when I have chronic insomnia for around 4 nights.

Ovulation time will be intersting for me, in a few weeks. I really hope this is life changing.

My G.P also said some patients use an SSRI just for certain days in the month to help with insomnia, etc and we can consider that alongside the Minipill if needed.

@Ernieshere that's really interesting, I hope the mini pill sorts things out for you. I've been toying with the idea of going on it too but haven't spoken to the GP yet. I have seen massive improvements in the increase of symptoms at ovulation and prior to my period since going low histamine - decrease in the insomnia, palpitations, tinnitus - although still get a milder version. I do feel that for me histamine is at the root of this so am going to see how I get on over the next few months, but if no significant improvement on that I will ask to go on the mini pill.

Morning everyone @TiddleTaddleTat sorry I didn't reply yesterday, I had a bad headache. Thanks for the coconut milk tip, I'll check it's out. I found some some pure pumpkin seed butter on Ocado that I'm eating a lot of. It's a bit green and sludgy but it's okay!

@Fedupofitnow876 yes definitely as Tiddle says keep resting and try not to overdo it, even when you're feeling well, though it's more challenging at this time of year.

@Ernieshere I'm glad the mini pill is helping you - this is yet another thing I'm thinking about! I already have some here. Over the months GP has given me so many meds that I've never taken. I have in my cabinet all unused: Montelukast, Amitryptiline, Sertraline, oestrogen patches and progesterone mini pill 🤪.

I feel like I've reached a baseline over the last couple of days. It's still much lower than before my cold, and my heart rate's still higher, but I feel stable again. Hoping I can build from here with pacing. And still hoping the supplements and diet will help 🤞🏻.

@fedupofbed sorry to hear about your headache, has it got better? The pumpkin seed butter is intriguing, might check that out.
I've thrown caution to the wind a bit today in regards to histamine.
I'm hoping that because my symptoms seem to align with menstrual cycle that I can get away with eating more flexibly most of the month and watching out for when histamine is naturally higher.
I'm trying out a GF focaccia recipe today that my naturopath recommended. It's got yeast in... she said it should be fine. Kind of don't care, I just want to eat it!!!

Can I ask a question that I feel I ought to know given how long I've been reading this thread...how many of us had positive covid tests (either the swab or antibody)? I was sick March so no swab for me, and have a negative antibody 5 months after getting sick...but I don't believe the tests are reliable.

I'm curious mainly because of the new highly contagious version. My kids have both been in close contact with positive cases in school this week...how likely is it that I could catch this again?

Hey everyone.. I'm only on day 10 but thought I'd ask people that have been through it. I have been having chest pain all day. Oxygen sats are okay. Im just wondering if I'm likely to go on to get really unwell or am I likely out of the danger zone?
Sorry to ask here. I just have terrible anxiety about it all. Worried about blood clots on the lungs and all sorts. Surely they'd be more symptoms of I had anything like that.

@AstridAv I'd expect you to be short of breath as well as chest pain if you had clots. But if you're worried you should call 111 they can do a proper assessment of risk over the phone. Sorry to hear you're unwell and rest, rest, rest to give yourself the best chance of recovering quickly...

Hi @givemeanother I had a negative swab (but 10 days+ after first symptoms) and also negative antibody test. I believe most people on this forum who had an antibody test also tested negative (and I think there was another thread running about this for a while too). I'm a bit worried about getting it again from my children too. There seem to be a few people posting on Facebook and Slack that they think they've had it twice - though second time milder.

@AstridAv I hope today is a bit better for you. Keep resting 💐.

I've just had a long acupuncture session - she very kindly saw me on a Sunday morning so that she could fit me in before Christmas. Feeling very spaced out now and typing this in the car while I wait for poor DH who is trying to buy a turkey on the way home - super organised this year 😳.

Hi everyone, just been catching up with the great again...
@Ernieshere I’m so glad to hear that you’re finally getting some sleep! Long may it last. I’m sorry you didn’t get on with the HRT and it made you feel worse, but it’s brilliant that they’ve switched you over to progesterone so quickly on the mini pill and even more brilliant that it might be working!

@fedupofbed I’ve been thinking about you, as last time I checked in you were feeling very low. I’m glad to hear you’ve reached more of a baseline, even though it’s not as well as you were prior to your cold. I hope you continue to see improvements even if it’s all painfully slow...

News from my end is that I’ve started my flushing niacin finally, and within a day noticed two distinct improvements which I’m feeling really quite amazed by. Firstly, I was able to work for longer than just a couple of hours, without the feeling of mental overwhelm and ‘wading through mud’ that normally kicks in. I just kept going till school pickup time and actually felt almost normal.

Secondly, I’ve noticed that after exercising (I’ve done one walk, one run and one climbing session) I feel energised - well, tired out but positive and mentally alert. NOT needing to immediately get into a hot bath abs go straight to bed to rest, which is what I’ve been doing for the past two months.

I really, really thought this might be a fluke or a placebo response... but I just can’t see how. The feelings are so distinct, particularly the lack of brain fog.

I just very much hope it lasts. I’m in bed typing right now after a cold rainy walk with the kids, and I felt ‘the fog’ descend and felt cold to the bone, and exhausted again, so I know I’m not still myself. BUT those two positive changes are huge for me. I’ve really been despairing about work recently as I’m freelance and we are broke, so I really need to be able to pick up speed again in the New Year.

I truly hope all of us continue to see more tangible improvements soon

Love to all xxx

• not ‘great’ I meant ‘thread’ sorry!

I've just created a new thread...

Long Covid support thread www.mumsnet.com/Talk/coronavirus/4112307-long-covid-support-thread