Recovery from ME/CFS

[afrikat]

Has anyone had ME/CFS for several years and made a full recovery? I have been ill since May 2017, diagnosed with ME/CFS in 2018 and developed chronic migraines in 2019. For several years I was moderate - could just about manage to work, spent most of my other time resting. Until mid 2023 I was then probably mild. Still working full time, but also managing to socialise and spend time with the family. Lots of resting and pacing and some 'crashes' but definitely able to do more.

Mid last year something seemed to just switch within my body. I no longer felt utterly exhausted all the time, my brain wasn't full of fog and I could do more and more activity. Since January I have slowly been upping my activity levels to the point where I am now doing 10,000 steps a day (a year ago it was barely 2000), I'm doing weights and cardio 3 times a week and my body just feels...normal.

After being ill for so long it feels absolutely amazing but I just don't know whether I can trust it - can people really recover from this illness after 7 years?

ME/CFS is a complicated diagnosis because there are perhaps multiple causes.. and in some cases it can resolve. Just great news that in your case you are doing so well, really cheering! I would say I would still keep an eye on the pacing etc. as you must have been something right to recover.

Thanks for answering. It's kind of weird because for the first five years I tried a million different treatments and regimes to recover but over the past few years I'd pretty much given up on recovery and had accepted the illness so haven't been doing anything specific, other than a few basic supplements and pacing myself. You're right about the pacing and I'll continue listening to my body

I think 'acceptance' might be part of your recovery too. The time scale is also interesting as I was talking to someone with a different serious chronic illness the other day who was in her 70's and in remission. She told me that it took at least 5 years of her doing loads of things for her to start improving... and she also wasn't sure which thing had worked, perhaps it was the combination.

Perhaps so. It's tricky when you try so many things and the journey isn't linear, you end up not having a clue what has and hasn't helped. I guess I'll just keep doing what I'm doing and hope for the best!

I know a couple of people who recovered after having it severely in their teens, but they've since had flares in adulthood after prolonged stress.

I'm thrilled that you're doing so well, its reallt fantastic:) do continue to look after yourself and recognise it as being in remission- ME never truly goes away.

@Toothtastic funny, I've heard 5 years being mentioned with regards to ME too (approximately 5 years before someone will go into remission)

Yes remission is probably a better term than recovery.

Yes, you have described it beautifully, it really is almost as if a switch has been flipped. Be aware you can regress when under stress so watch out for that.

I had a couple of decent years afterwards before being hit by several auto immune diseases later on. No idea if it's linked or just bad luck.

I'm currently in the depths of ME, this thread is bringing me hope so thank you for sharing :)

I'm sorry you've been hit by that. It's so hard to know what's related 😕

You're welcome. I really was so so ill for so many years, I had absolutely given up hope of ever feeling 'normal' again and I can't believe it's actually happened. I haven't told many people in real life as I'm scared of going backwards but if I keep pacing myself hopefully I won't. Good luck to you and I hope you see some improvement soon

I've had CFS since 2013. I've steadily increased my hours (I'm a teacher, which is not a good job to have with CFS) and I still can't work full time. I run the home, all the meals, shopping etc, play sport have a social life out of term time and often wonder if I did a different, less full on job (and my H pulled his weight at home) if I could work full time.

I am aware that I've been pushing my luck over this last year. I've agreed to more and more things and have crashed each holiday. This last time I was worried that I would be back to square 1 but I'm hoping that I'm not, as it looks like I'm going to be well enough to go back to work at the end of the holidays. I've just got to accept that I have my limits even after 10 years.

I'm really pleased you have come out of the other side @afrikat

Do you need to work ft? Sounds like it's a good balance to be pt if it helps your health.
Probably a safer option rather than requiring DP to step up - if he was too tired/whatever and didn't do stuff then you'd be stuck ft and trying to juggle everything else.
I really feel for anyone with ME/CFS- I've had loads of migraines over the years and it's just impossible to do stuff sometimes- only for a day or few days though. I can't imagine how you'd manage if you were wiped out like that long term xxx

@Userxyd you are right about it being safer than requiring the husband to step up! He is never going to do that. My earning potential is greater than his though which is frustrating when we could do with the money.

My daughter had ME for about six years and made a full recovery after undergoing the Lightning Process. I absolutely agree with others about the importance of pacing.

@whyhere I'm glad your daughter recovered but the me association does not make any recommendation of the lightning process and most people in my support group advise against it.

@afrikat that's great you're doing so much better. Do you mind me asking how old you are?

I was told that if people make a full recovery it is usually young people and if you have it longer than. Two years it is is unlikely. I think a cautious approach sounds sensible as pp says.

It's a bluddy awful thing to live with. I'm three years in now.

I'm glad your daughter recovered but the me association does not make any recommendation of the lightning process and most people in my support group advise against it.

Everyone is entitled to their opinion, of course, but in my small circle I know of three people whose lives were transformed by it, many years ago, and are still well to this day.

I was very ill (housebound) for about 18 months, then gradually improved from there to being able to work very part time and do a few things, to having another baby and feeling almost normal. But it’s possible I had long covid rather than CFS/ME as the illness that triggered it all was one I caught in early 2020, before testing systems were really up and running properly. I didn’t have a cough, which was considered to be the main covid symptom at the time, but tests from the GP showed that something was wrecking my system, impacting liver function, etc.

I also think that acceptance is an important point …I’ve had cfs for many years but I fought it for so long that I was very firmly stuck in “fight,flight or freeze”… I did some courses where I finally started to accept things,be kind to myself and learnt mindfulness and it has been a turning point. I had some phases last year where I also felt “ normal “ which was amazing but I am very aware of how my long standing unhelpful coping strategies and tendencies kick in sooner or later ! I think anything that gets you out of the fight or flight phase is good as I think that state of being inhibits healing and true rest and recovery. I have heard of a number of people who have recovered fully using various ways ,someone even just spent many months sitting in her garden and that turned the corner for her. I think when people have stopped having regular crashes then life gets a lot easier.

I had it for three years and so did a close friend and her daughter. We all got it post virally after a really nasty flu and it lasted 3-4 years for all of us.

We took loads of supplements - iron, Vit D spray, B complex and others. We did very gentle exercise and rested outdoors. We did housework in 5 minute bursts then rested for 15-30 mins. We ate very healthily. I used First Defence to avoid catching other infections. My friend and I both dropped our work down to about half a day a week (from about 25-30 hours) and her daughter missed loads of school but caught up.

But I have no idea if it would have taken that time to shake off or whether we helped it along. Maybe post-virally generated CFS is easier to recover from.

It was a real low point in my life. Huge sympathy for anyone coping with it.

@Windywuss I'm glad your daughter recovered but the me association does not make any recommendation of the lightning process and most people in my support group advise against it.

I also have personal experience of a family member feeling so much better after doing the Lightning Process. It is fine for the ME association to not recommend it but the ME Association do not really offer a lot of hope themselves.

I tend to go by the "if I am lost ask advice from those that have found the way rather than those still lost." Which is what the ME Association seems to be. They say there is no treatment and there is no cure. That is not what you want to hear if you have ME.

People do get better OP. I am so glad that you are.

ME is incredibly complex and I think there are many contributing factors to it's development.

With the community rightfully pushing back against medics still pushing disproven & dangerous GET & CBT, I've noticed a tribalism wherein people get incredibly angry about anything which could be interpreted as supporting the (wrong) idea that ME is psychosomatic.

The truth is that anyone living with a severe chronic illness needs to take steps to look after their mental wellbeing and many severe chronic diseases are made worse by stress & emotional upheaval. Yet no one suggests an auto immune disease is all in the mind!

I don't see why we can't acknowledge that ME can also be affected by stress etc, it doesn't mean it causes it or that it's a psychosomatic illness.

On twitter I once mentioned that I found meditation helps me to manage my symptoms (notice i say 'manage', not 'cure') and some strident twit told me I clearly wasn't actually ill or have ME. 🙄

I am 43, got ill when I was 36 so it's been 7 years. I've read similar things about people recovering more when they are younger and when they've 'only' been ill for a few years which is why I'd pretty much given up hope. I'm going to maintain my current activity levels for another month without adding anything else and see how I feel then

I expect there will gradually be a realisation that ME/CFS is a range of somewhat similar conditions, some of which are already known but perhaps not easily diagnosed. Certainly I was misdiagnosed with CFS in my twenties and now know I have congenital myasthenic syndrome, but it is hard to spot and the tests have only been getting better recently

This fact it probably is multiple neurological type conditions may well explain why different things help different patients

@AssassinsEyebrow forgot to add - agree regarding things to help mental health. Myasthenia is worsened my illness /stress so I am switching job now to a less.stressful.one and trying to build yoga and meditation into my life. Doesn't mean it isnt a very real neurological condition.

But I also understand that actually it's not enough to meditate etc to get rid of the symptoms, it's more a nice thing to do alongside medication etc and I really hope more research reveals more answers for people battling chronic fatigue