Any ME/CFS recovery stories?

[Psm92]

Been suffering badly since covid infection almost 2 years ago. Losing the will to live.

Do you have ME or long covid?

I'm getting better after five years. Mine was post TB/Pneumonia. It does seem to take at least three years to see a difference. I had counselling around acceptance. I don't think that I'll ever get back to the levels that I once was, but I'm having a life at the moment. My achievement used to be having one day out and keeping the house reasonable. Now I'm having days out (with lots of sitting) and I'm on top of the house. Keeping my weight down and eating for nutrition has helped. At first I used to eat for energy, but the weight gain was making things worse.

I have recovered from what I had determined to be post viral ME after contracting Swine flu all those years ago. I wish I could tell you the secret but to be honest I don’t know exactly how I healed.

It’s just so very individual or as simple as time heals. One thing is I tried everything I could and never gave up. I read and read and read. I tried gentle nourishing herbs, restorative yoga and so on. And so on.

I am still sensitive and have to be careful about pushing myself. I try to take care of myself, spiritually, mentally, and physically. I came to finally realize my body had not betrayed me. It was taking care of me in a way that is hard to understand. I had no choice but to view my recovery as a journey into myself.

I do hear your struggle. I had many days I felt so hopeless. Some days I never got out of bed. So many other days just lost to the fog.

Long Hauler’s wasn’t a thing back then. I ran, not walked, to my Covid vaccinations, not out of fear of the two week virus, but the god awful aftermath. I do hope this means there is more acceptance and or resources out there for you now.

I believe you can heal too. I do!

This might be useful.

www.nbt.nhs.uk/our-services/a-z-services/bristol-me-service/post-viral-fatigue-a-guide-management

It took me six years to recover. At first I couldn't walk, couldn't talk and lost my short term memory totally. By the end I could pretty much work a full day as long as I rested for a couple of hours at lunchtime. There were lots of relapses in between but you do get better. For under-40s the average is supposed to be 5 years.

Took about 2 years to get back to some sort of normality but another 5 years to be able to say I was over it. I still have the odd 'off day' 20 years later. Hang in there and go with your body, don't ever push yourself too hard in the early years. Good luck!

Yes, of course. A DN - dancer - was confined to bed for a year, barely walking for another 2, then recovered enough to get a 1st in dance.

It’s horrible but it’s not forever.

can i recommend a free (or donation based if you want) programme if you aren't getting other support? www.danielvanloosbroek.com ....i've had CFS for many years (and am also under an NHS CFS service that also sees long covid people) but have been really turning a corner this year and found this programme really helpful. Please do make sure though that your GP isn't missing any reversible causes ,there are lots of people being mis-diagnosed or mis-managed as they are presuming its long covid when there are other factors involved.

Is it ME or Long Covid?

'It's horrible but it's not forever'.

I'm not sure where on earth you've heard this terribly misinformed statement.

Most do recover. Many do not. For some, it's a death sentence (it has finally started to be recorded as a cause of death, after much fighting for this). Deaths are extremely rare, thankfully.

However, as a 'moderate' sufferer for over 13 years, where it's only got worse, not better, since I got it in my teens. In an occupational health report, I had the doctor record that I was not likely to ever recover now, and I have to say, I agree it's likely I will not despite my best efforts. The 'it's not forever' statement is horribly offensive, and nonchalant.

Agree with a previous poster about the eating for energy -we really will try anything. M.E is disabling, it's no joke. There are good days and bad days OP. The good days are worth being around for.

These guys gave a strategy www.theoptimumhealthclinic.com

plus treating sub-clinical
thyroid issues (meds)

plus mitochondrial supplements - everything
plus b vits, methylfolate etc for myhfr mutation
plus extra electrolytes
plus a ton of anti-oxidants
plus gluten free (already vegan but dairy can also be an issue for ppl)

Recommend Dr Ben Lynch book/mthfr website, youtubers Elliott Overton and Dr Eric Berg and ‘understanding mitochondrial nutrients’ FB group.

Not cured but am significantly improved!

I was diagnosed with cfs and fibromyalgia- turned out I had SIBO. I used oil of oregano softgels per pack instructions to clear the bad bacteria in my gut, and take probiotics now, either in tablet form or food e.g. kimchi, kefir etc.

I hope you find your solution, it does take a bit of personal investigation and doctor visits to get there. I feel so lucky it’s gone, but had 6 horrendous years and never expected I would recover.

Have you tried cannabis oil? Changed my life

There is an access scheme that I use and I use Sapphire clinic
I moved from the medical cannabis clinic as their service was dire

It's £40 for the medicine and £40 for an appt using access scheme if you do a few surveys

It changed my life I had chronic pain and desperate anxiety that was slowly making me just want to die

It happened to me after I had sepsis three times in the space of 15 weeks and I had a nephrostomy at the time

Sending you love. Look into the oil xxx

I have lurked on MN for years and have finally signed up to reply to this op. I cannot overstate how much I agree with the PP I am responding to. I have suffered from ME at various levels since I was 10. I am lucky that I have recovered to a degree that I can hold down a job (but that’s literally it - my leisure time consists of recovering from work and occasionally doing a bit of knitting) - everyone has a different journey though this condition and I appreciate that PP’s may have recovery stories - so did I until I relapsed again and again. But it is disingenuous to suggest that their journey (oh it only take 5 years to recover from) is the same for all. I am 25 years plus into managing ME and it still constantly surprises me. It’s totally toxic to present a recovery narrative that could just make other sufferers feel like a failure. What I would say as positive (and there are not many) is that it does make you assess your priorities in life and can help clarify what you really want and need (to a degree - it all sounds lovely and insightful until you think about the financial cost of chronic illness). I guess my advice would be to not listen to ‘recovery stories’ and listen to your body and try not to be too hard on yourself.

Thank you for joining to offer your support.

M.E is so awfully misunderstood already, has been for far too long. The last thing we need is untrue narratives such as that spread, it's actually really harmful.

Like you I am 'functioning' - attending work, although my health in the last 2 years has declined and my M.E is worse than it's ever been. I'm likely to be let go from work as a result, or needing to voluntary resign & change roles. The thought terrified me. So it's interesting your point about about putting yourself first, listening to your body, and not be too hard on yourself. I'm starting to think needing to leave my work won't be such a bad thing - I may have a better quality of life in some ways. Maybe I'll be able to see a friend, exercise a bit, or do some things I enjoy instead of collapsing in exhaustion on my kitchen floor, laying in bed for days, and being unable to remember a short sentence someone just said to me 5 seconds ago.

I think the thing is that fibro, cfs etc do not have a diagnostic test, it’s a medical bucket when there is no other diagnosis. Sometimes a diagnostic cause can be missed - some I have heard of POTS, SIBO, food sensitivities, sjgrens (not spelled correctly). I think it’s worth bearing this in mind, completely respect that for some the illness cause is genuinely medically unknown, but when the symptoms are so life changing I’d say it’s worth ticking off what you can, and hope something works or at least improves things.

It's worth mentioning of course, it can do no harm. But it's also important to remember and respect that most people with M.E are not diagnosed willy nilly, have several years of heavy testing to rule out other diagnoses (plenty over 10, 15 years, like in my case, I'd been suffering for over a decade before being diagnosed). I honestly have had more tests in 1 year than most people see in a lifetime.

Upthread b12 deficiency was mentioned. It's useful because b12 deficiency can cause some awful similar and severe symptoms. It's not got a patch on a genuine case of M.E though. I know this because I also have b12 deficiency that has been under treatment for 2 years. B12 deficiency is certainly exhausting, weakening, and makes you physically ill, however, exhaustion-wise, it's not a patch on an M.E flare.

M.E is not well understood, even by practitioners. Seeing comments like what I picked up, drives that fact home even more.

I got my fibro and fatigue back from life wrecking to merely miserable occasionally. From crawling up the stairs with a break halfway to barely thinking about it.

It took years of trying everything and the same thing doesn't work for everyone

Things that definitely made an improvement in order of what worked best-

Rest, don't push it, you won't win. Pushing it leads to body pains, really pushing it leads to brain fog which is worse. I can't do everything I want and it's upsetting to compare to normal people, but it's a gazillion times better than it was

Made sure never to get cold - don't underestimate this
It was

Stopped consuming anything containing any type of artificial sweetner or msg. I noticed a connection and after eliminating it totally had massive improvements in joint pain and fatigue. Roll up like a bug for days if I fall off the wagon now
Ate only real foods, despite being too exhausted to cook. Lived on rice and tinned veg for a while ( when you feel better slowly reintroduce things but never msg or sweetners. Aspartame is the devil)

Gave up sugar for a month following an anti candida diet, but realistically you can just not eat sugary foods. I cut sugar out of my tea . After this everything tasted far nicer, things like vegetables. The morning stomach pains and glass in the feet feeling went

I've tried every vitamin and supplement going, I think the only thing that noticeably helped was vitamin d and chlorophyll tablets ( get the cracked wall ones)
Don't get sacked into buying American supplements, they're too massive to swallow

Had my amalgam fillings replaced - had improved sleep

Regular osteopathy or chiropractor visits - the aim was to alleviate any stresses on the body. Turns out I've got degenerative discs too

Acupuncture- helped with fatigue. Had it on the NHS
Acupressure, same, but paid privately

Stopped taking diclofenac - the permanent cold feeling relented somewhat. Did this as an experiment after reading an article about vultures dying after eating the livers of dead cows in India that had been given it( seriously) great painkiller but crap side effects I guess)

DO NOT LISTEN TO ANYONE PRESCRIING EXERCISE
they're a quack and they'll harm you. You can improve fitness without all the bs of pushing through it. Do not exercise during a flare up,

If I think of more I'll post it

PineapplePear I was diagnosed with ME/CFS but now have a diagnosis of Sjogren's Syndrome (although still have the ME/CFS one) - of which fatigue is a huge part for many sufferers. It has been a long road to getting the new diagnosis but important as different treatments etc. Of course some people can have both...

Had ME for 7 years. Fully recovered running ultra marathons now!

@BigotSpigot glad you’ve seen improvement. I wish there where stats available on how many people are misdiagnosed, rather than true ME/CFS etc, I feel the test the gp requests before diagnosing me/cfs is too variable and for most won’t test for all potential causes.

I was diagnosed with CFS in my early 20s. it was devastating. However, I was one of the incredibly lucky ones who did recover. I had to COMPLETELY change my life. I had incredible support from my partner and family that really made a huge difference as I was able to just completely stop everything, no responsibilities, just rest. I also had a very good doctor. She gave me both traditional and alternative medicines. I altered my diet, and went through phases of complete rest and then very gentle exercise, only when I felt able to.
I was able to return to a very small, low stress job after about 1.5/2years. I would say I was still symptomatic for the rest of my 20s.
I'm not sure whether it's connected, but about 10 years ago, due to fertility issues, I was finally identified as having an underactive thyroid. I suspect that had been overlooked on previous blood tests considering how quickly I got pregnant once I was medicated.
It's been nearly 20 years now. I still have a much lower immune system than people around me, despite having a very healthy lifestyle. I get every illness going and normally take longer to recover. Otherwise, I would consider my self fully recovered. I now have children and have held down very demanding jobs. I was also able to take up a sport more recently.

It is such an awful illness, so misunderstood. It's a catch all phrase for a whole host of issues, many that are unexplained. They could never even identify what virus had triggered it, just that I had a very large response to an unspecified virus.

I am so sorry you are suffering with this. I really hope you will feel some improvements soon.

@RubyPip Hesitating to dismiss anyone’s lived experience - but sorry, that is not the trajectory of most people with ME and I suspect you were either misdiagnosed or you are just talking nonsense. Perhaps you could give us some more context in how you went from ME to running ultra marathons, great if that’s the case, but surely if you suffered from the condition for 7 years you might be a bit less blasé about your recovery story.

Thank you for replying me to me, I always feel super anxious talking about this, as it’s so hard to explain to people who don’t understand/or have not experienced the condition. We live (alongside managing the very real physical effects of the condition) with a legacy of dismissal, misunderstanding and and a very toxic narrative that it somehow psychological and therefore self inflicted/or self indulgent - which is insulting anyway to those who are trying to cope with mental health diagnoses.