To think ME/CFS recovery is very rare?

[savebuckbeak]

Been suffering for about a year now, since getting covid/some other virus. Ups and downs. Some good days, some bad. Wfh full-time but from home, and in a job I'm very familiar with so it's not overly tiring. Feeling pretty low and would love some recovery/major improvement stories. I can work on my laptop and potter about the house, but a 15 min gentle walk outside often just makes me have to get into bed.

I'm only 30 so it can be very lonely and isolating. No partner either.

There’s no evidence at all to suggest this! Guessing you just came up with this idea?

The link between trauma and physical illness has been linked - Bessel van der Kolk's, "The Body Keeps the Score: Mind, Brain and Body in the Transformation of Trauma" is a fascinating read.

The trauma/fatigue theory has led to lots of people being misdiagnosed with ME/CFS when what they have is fatigue as a symptom of mental illness.
ME/CFS is a dustbin diagnosis for all the people who have unexplained and long-lasting fatigue symptoms. It's not one thing, so one "cure" won't fix us all.
Proper diagnostic procedures take time, money, patience and a lot of testing. The NHS isn't up to this, so for now we are just left to muddle through.

I have CFS/ME, I first got ill in 2020 and although I’m not fully better, I have improved a lot (and still seem to be improving). I was bedbound at first and pretty much typed up my masters thesis in 20 minute bursts in bed. Could hardly move, couldn’t pick my daughter up, struggled to bathe etc. After about 8 months I started getting a little better and being able to walk, do more for myself. Now I can manage little days out, I work 3 days a week, I’m moving house in a couple of weeks and I am coping with packing and even did some painting which would have been unimaginable 6 months ago!

I was lucky to be in a position to really rest when I first got ill, and I think that helped a lot. People who are forced by circumstances to try and push through often end up just completely collapsing, I’ve found. After that, controversially, graded exercise therapy has really helped me. It gets a terrible rap amongst patient groups and I think that’s partially because there are lots of terrible practitioners who tell people with ME to push themselves more and more every week. My physio was very insistent that I took it slowly, establish a baseline and then very slowly increase it. I started with an average of 1500 steps a day and would increase it by 250 steps, keep that up for weeks until I was sure I could manage, then increase another 250. If I ever had a big crash, he would knock it back down again. I now average about 4500 steps a day, which is 3 times where I started!

I also mostly stay away from CFS/ME groups. I’m not saying that positive thinking is a cure, but the negativity was really bad for my mental health. There’s a really
common line that “there’s no recovering from CFS/ME, so if you got better you didn’t really have CFS/ME” and honestly I found that crushing! There’s a delicate balance to be found between accepting you have ME- and that can mean serious changes in your life- and not getting sucked into a pit of despair

I did. I was housebound and lost my job in my twenties. Now have four children a dog and a high flying career!

Turning point was an optician who realised I actually had an autoimmune condition called sjogrens. Doctors had dismissed my symptoms as ME/ psychological and it very much wasn't . Sjogrens didnt show up in a blood test but did with a biopsy.

Hang on in there. Keep researching. I find doctors give up investigating far too quickly.

@SweetSakura Glad you're well now...but you can't say you recovered from ME if it turns out you were misdiagnosed and never had ME!

@riotlady how did you actually manage to consistently stay within say 100 steps of your daily goal?
Also, now that time has passed and you have worked up to 4500 steps a day, how do you generally feel in yourself? Are you fresh for the full day or still fatigued most/all of the time but achieving more for the same level of exhaustion?

I did (I say did, I now live a relatively normal life).
diagnosed in my teens, bed bound at my worse. Took me a long time to recover, and I tried many options available then - graded therapy, the lightening process etc.

now I work, have children and enjoy my life. However, I have learnt to listen to my body and recognise when I need to stop and rest. DP is supportive and knows when I say I need to stop it means I need to stop. Before as a teenager I wanted to do what my friends did and ended up really very unwell.

Hang on in there OP! I was bed bound for 5 months, had to move back in with my parents in my late 20s. At my worst the curtains were shut all day and my mum and I would watch one 1/2 hour tv show a day and turn it off during the adverts because it was too long in one go. I eventually built a career working part time and now, 25 years on I have 2 wonderful girls and work full time as a senior manager (and a super-supportive DH!). I wouldn’t say I will ever fully recover as I have to make compromises, eg I couldn’t whizz off for party weekends away like some of my friends do because that would be too much. In some ways it’s better because I’ve crafted the life I want based on my priorities. I don’t ever feel I’m missing out. You can do this.

@savebuckbeak sorry, I could have been clearer. .my point is that "ME" is a diagnosis doctors often reach far too readily and very often it turns out (with more digging) that there was another cause. so I am encouraging you pursue further investigations. And don't allow them to dismiss you because your blood tests are normal

Other potential causes - coeliac, thyroid disorders, myasthenia gravis, nutrient deficiencies... I am sure there will be more. But these are ones I am aware of where people I know suffered for years thinking they had ME

I didn’t always, if I was struggling to meet the target consistently I dropped it back down. And sometimes necessity meant that I had to do more steps one day and less the next, but I tried to keep it as consistent as possible. Some of it was just pottering around the house more, I started doing some very short walks around the nearby streets later on.

At first it was definitely a “feel equally shit but manage more” situation. Now I am definitely starting to feel a lot better- not full energy, but just holding myself upright doesn’t feel like a massive demand like it used to.

@riotlady "I also mostly stay away from CFS/ME groups. I’m not saying that positive thinking is a cure, but the negativity was really bad for my mental health."

That's what my 22yo says too - that it seemed like the people who posted most on support groups were those who were most affected by their illness, because those who feel rather better are up and about doing things. So it's hard to be optimistic when hearing mostly from people who are extremely ill. Also that many people on the forums were so desperate to get better that they often tried quack cures, so there was a lot of pseudoscientific nonsense to sift through when looking for good information.

Only read first and last couple of pages but want to post.

I am so scared of my kids thinking like singing(posted early on). Its really Affectibg what i can do with them and I don't want them to grow up bitter 😔.

I havent found a cure qnd am scared as Ive put on a lot of weight which now also complicates things. I do have trauma in my past.

Im seeing a therapist now for 20 weeks who wants me to accept my limitations and be kind to myself.... but I want so much not to be like this. But battling it these last 12 years is exhausting. I certainly couldn't manage fulltime work or even half time in my previous profession.

My husband had CFS after an illness in high school. He had to do his final year over two years as he just couldn't manage a full day of school. It took him a few years to completely regain his strength and fitness but by the time I met him when he was 25 you would have had no idea.

I'm sorry you're going through this. It's emotionally and physical draining and very isolating but there is hope. Just take your time and listen to your body. Good luck.

@SweetSakura I meant to ask you - you said you were housebound with what turned out to be Sjoren's Syndrome. What was the treatment for Sjoren's that helped you get better? Asking as I do seem to have some of the symptoms of Sjorens i.e. dry eyes etc.

Exercising during a chronic fatigue flare up is a serious no no

In my case I got pregnant and that knocked the symptoms into remission!

But I have since developed another auto immune disease- myasthenia gravis - am currently taking pyridostigmine and prednisolone for that. I

@LifeInsideMyhead hi I was the poster singinginthesnow. I name changed.

My situation as unique. I was bitter of the disease as it robbed us. Not my mum at the time. She very much is a narcissist though which is seperate from the ME. But the ME made that part of her worse. She refused any type of medical help.

As long as you are doing everything you can to help yourself then you are doing fine.

I think my mum has held on to the illness because she has never worked. Has no qualifications and now 'needs' the ME otherwise she wouldn't survive financially without PIP.

That's what I was angry about. Not ME in general. I'm sure you are an amazing mum.

My mum chose men when she had energy over us. And I was in a bad place and angry when I wrote that post. I have only just seen your comment today as someone else wrote on here. And thought I would reply to you as I felt awful that I made you feel that way!!
X

A lot of people have decided that long covid = M.E./cfs, I'm not so sure. Those long covid sufferers who present with M.E. type symptoms but do not have perminent lung damage etc (Im one of them) can respond quite well to things like graded exercise therapy which apparently don't work at all for M.E. - or possibly there are different types of M.E. one of which does resemble long covid.

But yes, some people with M.E. do recover or at least get to the point where they can live a "normal" life if they are mindful of not overdoing it.

I recovered from CFS brought on by severe post-viral fatigue. So did a friend and her son who caught the same flu as me. It took about 3 years for my friend and about 18 months to two years for me and we tried everything under the sun to get through it - every supplement and meditation and had a LOT of bedrest.

I've had CFS/ME for 4 1/2 years now and seem, finally, to be on the road to recovery. I was housebound for 3.5 years and pretty close to bedbound for much of that. I was exhausted from having a bath or shower, and had huge sensory overwhelm issues so couldn't read / watch TV/ listen to music/ talk on the phone for more than a few minutes in a day.

Now I still need lots of rests each day but I can go out to the shops a couple of times a week, I can cook, I can have a friend over for coffee and I can go for a walk. All incredible improvements.

Things that I think have really helped me along the way in the past year are:

• the Gupta program (there is a free trial period and I really recommend it. I think it has been the single biggest game changer for my recovery)

• diet modifications to reduce systemic inflammation

• finding the Perrin technique, and seeing a gentle osteopath who does a modified version of the Perrin treatment for me

• reading 'Cured' by Jeff Rediger

• stretching every day

Sorry not sure why there are all the spaces in my post!

Seconding Dr Myhill, absolutely brilliant. You could try working through her book.

I've been diagnosed 10 years this year. When I was first diagnosed I had probably 1 or 2 bad days a week, now I'm lucky if I have 1 or 2 good days a week. I sleep 10-12 hours a night, my pain levels have increased, my brain fog is terrible, I have no concentration. My life sucks.

It's taken me 6-8 years to get back to having a near normal life. However I do dip occasionally. These past two weeks I've been having to pull over and nap for 20mins when I've been driving. And after three hours work this morning I've been completely wiped out.