What helps Long Covid? Any success stories please?

[Greedybilly]

Diagnosed a couple if months ago. Am managing to work 2 days ( but spend the other 5 recovering)
Am pacing myself, eating well , taking vitamins, accupunture ( which I think helps?). Anyone got anything that worked for them? It's grinding me down now just so exhausted .x

Really sorry to hear this OP.
I suggest you look into strategies for ME/chronic fatigue syndrome, as most patients with long covid would fall under this umbrella. Try looking into the Optimum Health Clinic - loads of free resources. And similarly Dr Myhill.
Unless you’ve been advised to have acupuncture I wouldn’t pin too much hope on it I’m afraid. For the amount of energy and money I don’t know if the benefit is justified, but that’s just my experience.
Otherwise it sounds like you’re doing the right stuff. Try to remain positive but also shift your expectations.
I’ve had ME for 8.5 years. It has taken a lot from me and changed my life forever. I’ve had to accept that there’s lots I can’t do any more. But equally there are some wonderful things in my life and I’m very grateful.
Good luck x

I absolutely agree with @Pomegranatemum I've had Long Covid for 5 years and have chronic fatigue syndrome/ME from it.

Pacing very carefully is the only thing to do. And I've had to accept that this is a chronic, long term, possibly permanent condition and that there is no point in trying to push through or anything else.

I'd recommend joining the ME association, or at least looking up their website,

Thanks both xx appreciate your advice.xx

I also think it can take a while to fully understand pacing. If you were previously quite a busy person then it can be hard to adjust to a life where even watching tv, listening to a podcast or talking to someone takes up energy.
I found spoon theory really helpful
https://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

https://me-pedia.org/wiki/Spoon_theory

Hmm Dr Myhill was struck off by GMC so might take her advice with a pinch of salt- just read some alarming stuff about her being investigated.

Look up Nicole Sachs, Alex Howard and the Curable app.

Her theory about feeding the gut makes a lot of sense tho to me.

Ok will do thanks! Love the spoon theory @Pomegranatemumx

Think there is a lot to be said for gut health. I don’t have long covid but had a very bad covid experience and was unwell for almost 3 months. I’ve never felt quite ‘right’ since but don’t have any symptoms that would suggest long covid. I’ve been taking live cultures in tablet form and have started to feel ‘normal’ for the first time in a long time. I’m not suggesting this is a ‘cure’ for anything and I firmly believe in modern medicine but I do think it is worth looking after gut health and doing what you can to optimise it.

Worth reading her side of the story before you make your mind up. The medical establishment has treated ME patients very badly for decades.

Just two things to add right to the great advice already given that have massively helped me.

Firstly oxygen therapy, especially if your symptoms include anything respiratory. I go and sit in a hyperbaric chamber every few weeks and it makes a huge positive impact.

Secondly I would recommend getting some counselling to accept the lifestyle changes you need to make long term. I spent three years making myself worse through a boom and bust cycle as I wouldn’t pace properly and kept pushing way beyond my energy envelope, until eventually I had some counselling to accept this is my new reality.

Following the above I’ve improved, and although I will never be who I was, my life is much better than it was at my lowest.

Thanks all - like I said gut health makes perfect sense to me. Will explore further. Thanks again it's much appreciated finding it all a bit isolating.

@MavisTheMonkeythanks yes was toying with counselling.x

Resting and pacing. Nothing else.

Ive tried everything including accupuncture.

Time is the only thing.

l would also suggest taking time off sick rather than working if possible. If you’re exhausted now working could make it worse. Also if you have to work make sure it’s not consecutive days. But rest rest and more rest.

One person I know has cut out carbs and found it transformative for her chronic fatigue issues, which I think are long Covid but not 100% sure that's a formal diagnosis. Worth a try?

What's the name of the tablets please?

Pacing , time and acceptance .
I know I am better in mornings so do things then . If I have something coming up I will rest and “bank” energy .
I know that mental activity and emotional activity are just as draining as physical activity so again work around that.
I rely on others to tell me if I am “running hot” because there are days when you don’t feel too bad , do too much and then pay the price.

I’ve had respiratory physiotherapy and speech therapy as well as specific long covid advice from long covid clinic .
However it has to be said in the very long term I am still improving. Watching videos of myself from last year I can see improvement even now.

There is a lot of woo woo science and fads claiming miracle cures . I would not waste money on those . However tai chi , mindfulness , forest bathing, walking, meditation , gentle exercise like aquarobics , art , I have found useful. I tried beginners Pilates but was advised to stop because it just exhausted me too much.

@Lollygagglethanks for your suggestions and glad to hear you're improving!!x

Time…….

Not sure I’ll ever get back to the ultra marathon runner I was pre covid, but 3 years later I feel like me again. I tried lots of things, not sure anything worked, and I was miserable and frustrated a lot. I still have high blood pressure, but it’s very under control. I think the final bit of my puzzle was sorting out hrt as I think the long covid symptoms overlapped with perimenopause (doctor disagreed, new doctor helped a LOT) and a couple of months into that I feel close enough to the old me.

@DoggerelBankthanks- I eat so many carbs def worth reducing I think.

I took Your Gut Plus tablets as there is evidence covid lives in the gut. I had recovered in 2 months and cannot believe the change. I heard about them in the long covid session I did. You can get them online. One of the big universities did the research into it so not a quack product at all. Hope they help. X

Check out Raelan Agle's page on youtube. She has interviewed many people who have recovered from LC/MECFS. It is an excellent resource.
Best of luck x

I had long covid for three years and consider myself almost fully recovered, though I am less active than I was before I can pretty much do the activities I want to do, I just have to be careful not to do too much in one day.

I spent a lot of time in long covid communities online as I was bed bound for a year. The first thing to say is NEVER push through if you feel that you are in an energy dip. You may have to live a quieter life for a while.

Dr Paul Glynne is the expert in long covid, if you scroll down through the guidelines for holistic guidelines to manage LC then all his recommendations are there. Antihistamines made a big difference to me and to lots of people I know. I was prescribed them by the long covid clinic, but you can now get both types (H1 and H2) over the counter I think. Google 'draw on expert opinion to optimise care for long covid and it should come up

I also did the rest, repair, recover programme with Suzy Bolt here and then the Fern programme. Both were a real life saver, they helped me understand what was happening, gave me tools to deeply rest and then to build up strength and also were a source of friends over that period.

For some reason Mumsnet isn't letting me post links, but you can find her by googling too obvs

You absolutely can get better, but you can't rush it.

Thankyou for all advice.xx

How are you all avoiding catching it again? I’ve coming up to 2nd anniversary and have also spent a year in bed.

l want to go out but it seems rampant again.