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

@Ernieshere I saw my GP initially with insomnia, night sweats, general crapness, who suggested taking the pill to manage what she termed as perimeno symptoms. I’m progesterone intolerant though and really didn’t want to try that, so I paid to see a private consultant who was really excellent, she gave me oestrogen gel to try explaining it should work straight away IF symptoms were actually perimenopsuse and not something else, and it did work within a few days. No night sweats until post-Covid when I had to up the dose. I’m also now on utrogestan (low dose of progesterone) which she only introduced once she was clear that the extra oestrogen was working.

So basically, the good consultants I think diagnose by reported symptoms, and whether adding oestrogen helps or not.

Loads of info on here
www.menopausedoctor.co.uk/

Dr Louise Newson has been doing a bit of studying of long-Covid women too... think she also did something with Tim Spector of the Covid symptom tracker looking at severity of symptoms and role of oestrogen

I’m at month 7 and for the first time since getting Covid I’ve had a proper period. For the last 6 months my normal symptoms completely disappeared, but this month my normal period, pmt, hot flushes, anxiety and difficulty getting to sleep all reappeared.

Hi, I haven't joined in before but reading these threads has kept me sane since getting ill in March. Thank you... I've had ongoing pains around my lungs, breathlessness, coughing up clear sticky secretions, tiredness, weakness (I lost 1.5stone during the initial weeks, was very unwell stuck in bed, lowish oxygen but not admitted to hospital), stomach issues. Recovery has been slow, I've had relapses, particularly with breathing and once with terrible dizziness/vertigo in June but but... I want to whisper that I feel like I have recovered. Or at least recovered well enough to live my life again. I started taking antihistamines in September, so the MCAS thing is very interesting. Whether they've made the difference or its the time that's passed I don't know. But there is hope x

Hi @Runningshorts wow fantastic!

Ooh @Runningshorts tell us which antihistamines and what dose please!

And @Runningshorts congratulations on your recovery, you give us hope!! X

HOLY SHIT!!

So... See the idea that some 17% of people are potentially genetically predisposed to developing MCAS?

I have always been allergic to oranges...

I really hope for better days for all of us, it's been terrible going through all this..
I'm taking fexofenadine 120mg a day, since early September when my lungs were bad, plus have been taking a multivitamin containing omega 3 for ages. Tried to eat healthily etc. I'm no doctor, I can't recommend this or that treatment and I don't know if any of it has made a difference, only that I am doing well right now and feel more myself. In some ways I'm expecting another relapse but am v grateful to feel well.
The studies are really interesting, I hope that soon they will have a better idea of what's going on with us and how best to help x

Hello. I was on here a while ago. Hope everyone’s doing OK. Just coming on to say at 7 months and one day since first symptoms I have reached the personal milestone of jogging 5km (albeit in 39 minutes and up and down my kitchen!)

I find it’s easy to feel I’m not making any progress. However, a few months ago I couldn’t even walk the length of my kitchen twice so looking back I’ve come a long way.

So good long Covid is getting recognised now (although I think a lot of the publicity’s just about making young people compliant).

Sending good wishes to everyone.

@Runningshorts I’ve been taking fenofexadine and Omega 3 throughout too (and turmeric).

@Ernieshere thanks, I always have sleep disturbance just before the period, which is a joy with CFS as you can imagine. Had the disturbance since about 20-21, am just used to it.
This latest thing is more in line with CFS I think, I wonder if it is related to adrenaline or hormones, it’s definitely an on/off thing, something changes.

@AndsLee Thanks so much 💐 I tend to actively not read the horror stories as it doesn’t help anxiety about all this. Was having a bit of a wobble last night and shouldn’t have delved into it all.
I ageee that this poor man’s situation was different to ours, it’s better to focus on the good news stories.

@LetsBeSensible My gut feeling is that this is hormonal too. Mixed with post viral fatigue.

The histamine idea is interesting and I think there’s maybe something in it... but only as much as a hypersensitive state.

@Egghead68 good to see you posting. Pleased you’re doing well

@MillStone I think CFS is hormonal.
Weirdly, since being laid low by Aunt Flo, my breathing has gone rubbish and my chest is wheezing again. The effort of washing up is causing breathlessness.

@LetsBeSensible interesting! The pattern to my days, how I feel mentally and physically are exactly the same. Whatever is happening seems to be very much in sync with my circadian rhythm.

The 3am sleep disturbances could be attributed to hormones too.

Maybe if there are subtypes of Covid there are different reasons behind it for different people. Histamines etc.

To all, you regulars, hope you feel better,stronger, in the days ahead.

xxxxx

@Runningshorts thanks so much for posting - and congratulations to you! Lovely to hear positive stories. I’m curious, did your GP prescribe the antihistamine and if so, did they explain anything about long Covid and histamine intolerance? Ie is this thing better known about than we thought?

@Egghead68 great I hear you’re making improvements too. Xx

Ps- me too with 4 days to go till my period... and I feel much much worse than I have done in weeks. Everything feels hypersensitive. It’s not really like PMT, more like a swollen, itchy, foggy allergy type feeling.

I wonder if there's anyone who has recovered from long covid who has not been prescribed either an antihistamine or a steroid? Those seem to be the most promising treatments I've heard about, anecdotally.

Hi everyone. I continue to plod along. Progress is so slow that most of the time I only realise it's occurred if I look back over a fortnight and realise I'm doing more. It is definitely happening though! Work is still going okay but I have had to scale back on 'nicer' rehabilitative things like yoga and gentle strolls to fit everything in.

My symptoms are now very in keeping with typical Post Viral Fatigue, ie extreme fatigue and sleep issues, which is why I've not commented as much lately. My melatonin finally arrived from the States yesterday- but I was gutted to read that it contained wheat so no good for a coeliac, gah. I've now gone back to my doctors to see if they'll relent and prescribe me some.

I was interested to read all the comments about hormones as I've been thinking about this a lot myself. Before all this I was peri menopausal with very irregular periods. Then weirdly for the 5 months when I was at my sickest my periods returned like clockwork every 3-4 weeks. Between ovulation and the period starting my temperature would go right up and my glands would swell. They've now completely stopped again (nothing for 2-3 months). I was thinking of trying HRT to see if that would help in some way - glad it seems to be helping you @Whatapickle78 and great you've started running! And @Egghead68 very impressed with your kitchen 5km!

Love and strength to you all 💪

@fedupofbed how annoying about the melatonin . I read recently that pistachios have a very high natural melatonin content. Might be something to try before you manage to speak to the doctor?

I'm in my mid 30s so not (hopefully) approaching menopause. Is there anyone else here in my age group?

@TiddleTaddleTat 38 here... but I’m a dude.

@MillStone ha so definitely not menopausal for you then... did you get feedback from tilt table btw?
I've just had a telephone appt come through from cardiology for next week. Wasn't expecting anything between the 24h ecg and tilt table. I suppose it could be routine or perhaps to discuss ecg results.

@TiddleTaddleTat thanks, no results yet. I’ve tried twice but no joy. It must be 7 weeks now

Good luck with your new appointment!