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

Oh and have covid at least 3x and neither of the subsequent infections had me particularly unwell and caused no last symptoms or worsening of my existing long covid.

That gives me hope. The doctor told me to avoid cardio until I can comfortably do a 30 minute brisk walk, I'm getting there but still having trouble with the brisk part.

it’s been such a joy and revelation the last few months to exercise and feel ‘good exhausted’ instead of ‘bad exhausted’. It’s still a work in progress - I was a keen runner before all this and I’ve still not managed 5km in one go yet, but I am nearly there, and I can do a whole gym class even if I do take some of the easier modifications.

And yes, 30 mins of brisk walking would have been a tough ask for me six months in.

Thank you @Catingle. That gives me hope! X

Thank you everyone for your messages- good to feel not alone with this. I am 'only' 5 weeks in and am trying not to call this/think of this yet as 'long covid'- but having had similar post-viral prolonged symptoms many years ago, I recognise a lot of what I am feeling now, with a sinking heart. Mainly now utter exhaustion, some tightness of chest, and a whole lot of weird transient symptoms -aching joints, deep depression [ I agree with previous poster who reckons this is part of illness, not a reaction to it].

Not helped by tendency of those around me to regard this as just being tired and I need to make more effort. I'm not- I am pacing carefully- but it's terribly slow.

very best wishes to all in the same boat, and great to read of those who are recovering.

twitter.com/organichemusic?ref_src=twsrc%5Egoogle%7Ctwcamp%5Eserp%7Ctwgr%5Eauthor

This individual has been conducting a survey on Long Covid treatments and also the same treatments on ME/CFS sufferers.

Hi everyone,1st time on this thread.i had myocarditis due to covid last summer, still getting episodes of heart pain, palpitations and breathlessness but not as often thankfully.am seeing cardiologist again next month, now thinking I need to ask him if I need to be referred to a long covid clinic

Best wishes to everyone

Hi I started a thread but might be easer to ask here.

I suffer mild long covid it seems, not surprised as I seem to be like that with other bugs and am hypothyroid, hypermobile plus have asthma that loves pollen and hates viruses (not too fussed about covid though!) oh and menopause 😜

Had it 3 times this last year and brain fog/ fatigue lingered terribly. On to week 3 with this infection. (And caught another chest bug this week. I also had bronchitis 6 weeks ago!!)

I am pissed off and desperate.

Gp had blithely mentioned antihistamines last summer; I didn't find the ones I tried effective. Possibly loradatine though had to stop as eyes went far too dry.

I'm finding nytol effective but wondered how long to continue to use and if this could be an issue longer term?

Trying loradatine again too. Eyes ok so far.

@redredbleu I had Covid in March/April 2020 and again last year. Had long Covid since a few weeks after the first infection (multiple chest infections followed by heart rate spikes, unexplained bruising, muscle pain, pins and needles, tinnitus, huuugee weight gain and the fatigue). All tests came back normal (of course 🙄)!

I've been taking antihastamines since late 2021, but since the second bout I've upped my dose to one loratadine and one cetirizine hydrochloride twice a day as since the second bout I seem to be allergic to everything and my eyes were constantly streaming (still can't wear mascara though).

Interesting you say about menopause, I'm late 40s and everything was regular as clockwork until Covid and then periods became very few and far between. To the point where I'm now not sure whether my symptoms are long Covid or menopause, or a bit of both.

Many of my symptoms have subsided since 2020 so now it's mainly the heart rate and the weight gain. I'm not sure whether this improvement is down to time and natural recovery or down to the pick and mix of supplements I take.

Hi all, I had covid-19 in March 2022 and developed some horrendous gastric symptoms which needed two doses of ompeprazole to treat the heartburn and shooting pains I was getting in upper tummy. However one very annoying symptom has remained since then which is burping / bringing up air. I basically burp after anything I eat and even after drinking some water. Its not constant and just happens for a while after eating or drinking but it’s excessive as it’s lots of air coming up not just a few - there’s no pain. That is my only symptom that has remained and it’s starting to really annoy me as it’s been over a year. I have no other symptoms. Has anyone had experience of this symptom post covid? Any success stories of treatment or it going away in time? Just for information, I went to doctor today and they have asked for another stool sample / test as the one I did last year was all clear.

I meant to also add to the above that I hope I have posted this in the right place. I’m sorry to read that people are still suffering with long covid symptoms. I really hope it clears up fully for everyone. I had an awful year last year as covid hit me so hard with lots of symptoms (gastric, crushing fatigue and heart palpitations main ones) and it took until February this year to feel better. Also needed 6 months of CBT to get over the mental impact it had on me as the fatigue was awful and having two young children I just couldn’t cope! It’s a truly horrible virus! Sending strength to anyone still suffering.

Sorry to hear this. I'm 13 months in. 2 million people with long covid in the UK. Awful condition. Very hard to cope with.

@Haveyoutried I’m almost a year in, it’s awful isn’t it. This time last year, I was leading a normal healthy life, going to work, holidays, shopping, hiking. Now I’m registered disabled with no capability for work. The fatigue is unreal I can hardly manage to walk a yards down the road, along with numerous other symptoms including cardiac.
2 million and maybe many more not recorded, sadly Covid and everything that goes with it are getting swept under the carpet by the government.

Me too. Was working in a busy job, gym three times a week, social and family life. Good diet, health educated Now every energy expenditure has to be thought about and going beyond it means pain for days. Very difficult to comprehend unless you are living it. I think closest condition is ME/cfs and so I just hope an outcome of long covid is that it accelerates science into resolving issues with cells/energy production/mitochondria. One in ten people get Long Covid even from a mild case so I do worry for others as the virus is so unpredictable.

I'm 7 months in and can't climb stairs when I used to climb mountains. I should eventually recover, but if I catch covid again will I get long covid again?

Just sending hugs to everyone still suffering. I still feel awful and it has decimated my health and finances and several relationships around me, so I am trying to come to terms with the fact that this might affect me in some way for the rest of my life.
It’s very hard to have to accept these circumstances fatalistically when you have years of life to go and a young family though obviously I know anyone in this situation has to do that and I am lucky that it didn’t kill me unlike other people’s experiences of Covid. Government abandonment is absolutely exactly what it is.

Hello. In the same boat here too. You're not alone. X