To ask for ME/CFS/Long Covid recovery stories?

[Psm92]

Been dealing with Long Covid for 2 years now. I'm not severe but bad enough that it impact every part of my life. Always sluggish, short walks still exhaust me and every task or activity requires a careful calculation of its energy cost. So tired of this, so down, just need some hope. I miss the days of just strolling through a park at a leisurely pace, planning city breaks, going shopping, days out. I'm only 29.

I had CFS after avian flu in my mid twenties. It was horrible, I got better after a year, can’t really tell you anything that helped.

one of my friends has had hyperbaric chamber treatment after long covid and she’s a different woman now. Expensive but worth every penny for her.

I developed ME/CFS in my teens (14) after having Glandular Fever. I'd say it was bad for the next 4 years or so - not bedridden, but like you described, low energy, exhaustion after simple short exercise etc.
it got gradually better & now I'm recovered (42). But I'd say I was probably recovered completely in my 20s. But it is incremental, so you don't always notice it getting better, rather you look back one day & realise you did something you couldn't do before.

Thanks both! Really glad to know you fully recovered.

Anyone else?

I also developed ME/CFS in my late teems after glandular fever. It ruined my education and my social life - you have my absolute sympathy, it was a horrible thing to live with. I'm in my early thirties now but I'd say I was fully recovered within a few years. And, while I'm definitely one of those perpetually-tired people, the fact that I'm currently able to function after years of broken sleep with two small children should hopefully reassure you that there is light at the end of the tunnel! Good luck to you. My one piece of advice would be to prioritise your health and wellbeing - be patient, and take care of yourself x

I developed ME/CFS after a virus about 4 years ago. Whilst not fully recovered I have definitely improved over time. There have been points (my worst crash lasted 8 months!) where I’ve been bed bound and could only manage a bath every other day, couldn’t work. I had to stand on a vibrating plate just so my body ‘moved’ a bit). I think pacing yourself and adapting really helps and you’re expectations adapt. I work full time in a job I can mostly do from home (1 day a week in the office). I don’t really exercise at the moment but I can see family and friends occasionally (although I do have to judge if I’ve got too much on in a week and check if there’s enough rest time after things so sometimes I have to say no to social occasions) and I contribute to the cooking and housework although my husband does maybe 60% of it. Im happy with my life and feel fairly normal. Hopefully it continues when the baby arrives! But I’m impressed with what I’ve managed over the last few years which have been extremely busy and demanding - planned a wedding in 3 months, sold a house, bought a house and all the viewings and solicitors etc that that entails and now decorating the house and dealing with pregnancy and preparing for the babies arrival (although I made sure my ante natal courses were online - adapting is the key!). Learn to pace yourself and what your limitations are and hopefully you’ll get stronger. I wish you all the best of luck with your recovery.

Love reading these stories from recovered people, it can be a terrible illness 💐

I have chronic pain rather than chronic fatigue and listen to the Curable podcast

Here's one which features someone who recovered from chronic fatigue after many years:

listen.stitcher.com/yvap/?af_dp=stitcher://episode/60856745&af_web_dp=www.stitcher.com/episode/60856745&deep_link_value=stitcher://episode/60856745

These kind of stories give me hope.

So glad to hear you've recovered a lot. That sounds amazing and congratulations on the baby!!!

I always feel a little guilty when I talk about my ME/CFS, because I've never had it severely. I work full-time (but totally from home) and do manage to see friends (though a lot of it indoors) and go for little walks now and then. But the things I really used to value - long walks, travel, even just going into town to have a mooch around - are often out of reach. I'm also single and would love to be able to meet someone, but typically "datey" things i.e. meeting in town for a meal and a walk, going away together etc, just seem so exhausting.

@Puddinggulper Can I ask, are you able to go on holiday, walk around a shopping centre, things like that? And if so, how long did it take you to work up to things like that?

I also had a really upsetting chat with a friend the other day who also has CFS (he wasn't trying to upset me, just sharing his own thoughts). But he said he'd never be able to be a father as he wouldn't be able to be the kind of dad he wanted, be active with his kid, be reliable with things etc. I know that was just his view but the idea of having to give up even the thought of being a parent was so upsetting.

Hi OP, I just joined Mumsnet again after a really long break (I've never stopped browsing though) having read your thread. I just watched this - it's another recovery story which is worth watching and people are talking on Twitter about also having recovered using similar science.

I had M.E for 3 years and actually also recovered using Curable as someone else mentioned above - it works on more than just pain. I tried it having listened to the podcast above. So please don't believe people who say you can't get better, there are so many techniques to try. I know someone just wrote in the Times too about having recovered from Long Covid. I think they're really similar illnesses in many cases (if someone has fatigue etc).

Here is another recovery video I like - it's similar science to what is taught in Curable. It's really inspiring

I got CFS 2.5 years ago and am about 80% recovered these days. I used to be basically housebound and struggled with very basic things like showering and brushing my hair. Now I can actually go out and enjoy a busy day!

I have had ME for 24 years. There is a form of long covid that has overlapping symptoms with ME, such as post exertional symptom exacerbation, neuro symptoms including autonomic dysfunction. However, I still don’t know whether this form of long covid is identical to ME, the cohorts need studying in parallel but separately so they are not prematurely conflated. It could be a subset of long covid becomes indistinguishable from ME but as said not known yet.

As my experience is ME until effective biomedical treatments are developed the best thing you can do is keep within your individual energy limits and not constantly push. If post exertional symptom exacerbation - where minor exertion makes you feel flu like and utterly drained - is part of your long covid I imagine the same principle applies. If you do naturally improve, you will naturally start to do more. If you constantly over exert and there is an underlying metabolic dysfunction along with other pathology as preliminary studies suggest you will just damage the body. Those who do this from the start have more chance of making a good recovery.

There does seem a cohort of people who get ill after a virus and can take up to a couple of years to recover but then do. Then there are others like me who remain chronically ill. I hope you are the former OP.

@Psm92 I have been on a few holidays and weekends away. One I did too much in the week prior and ended up napping in the apartment and walking veerrrryyyyy slowly so not able to do much but the others have been absolutely fine and I went out for meals and sight seeing etc like a person with normal health but usually in bed for 9pm. It’s very rare I go shopping though. That’s one of the things I’ve adapted - shopping only online really. There’s no way I could manage a supermarket shop every week.

@Psm92 I would say quite often I dread things and have no idea how I’ll manage it…but at least half the time I surprise myself and manage really well. Like I just summon strength I didn’t know I had. So there is something to be said for pushing yourself sometimes. But it is risky as other times it ends up that it was a mistake and I’m really unwell for 2 weeks after. You learn to make judgement calls. It has taken a few years but pacing really does expand your capacity eventually if you’re sensible. You learn to sense what you’re capable of at certain times.

Not at all the same scale but covid really took me out at the knees recently. I’m only 38, no health problems, but I was a bit run down and unfit and probably a tiny bit low on iron and it just flattened me. Took me about 6-7 weeks to feel any way ‘normal’ again.

I can say I noticed a dramatic improvement after taking high dose vitamin c and b complex daily - just the dissolve-able kind, I take one of each. Worth a go?

My 13yo has CFS so I'm reading this thread with interest

do fuck off, with all the respect your post deserves

Jog on knitterandstitcher
What a vile post

Thanks all for the lovely encouraging messages. I'll definitely check out Curable (is it free?) and see if I can make it a regular thing.

@Puddinggulper Glad you have made it on holidays and weekends away! Honestly the thought of walking through an airport, waiting during security etc terrifies me. I feel like I'd probably need a wheelchair to prevent a crash, but I have really difficult feelings around that sort of thing (which I know is my own issue).

@ganachee I'm sorry you've dealt with ME for so long. You're right, I need to be careful about overexertion and pacing. I am, about 90% of the time, but there is the odd occasion where I just push through, so thank you for reminding me to be more mindful of that.

What were the vile posts?!?! What on earth would someone say on a thread like this, jeez

@riotlady Very happy to hear you've recovered substantially? Is there anything you think particularly helped, or just the passage of time?

@pandarific Definitely worth a shot. How large was the dose?

I developed CFS in my teens, diagnosed at 15, but had it from 14. I was virtually bed ridden for a year,
Things were pretty bad for the next few years, then I learned how to manage it.
Tbh, I have had more flare ups since I had Covid19 about 3 months ago.
But still, I live a pretty normal life, I do far more in my days than a lot of people I know which isn't what I expected life would be like when I was first diagnosed.
I have had periods of exercising each day, I can go on holidays where I do 20,000 steps a day (not particularly easily! But it is manageable- being fat doesn't help my body either! So there's that against me too!)

You'll just need to learn where your physical limit is and you'll get a decent quality of life x