My recovery story, in case anyone is interested

[brenda]

Hi @Ewa

you can eat simply without doing cooking and that is based on a raw vegan diet using the dried superfoods that pack the nutrition in and protein shakes.

 

[Denise]

My body doesn't heal yet. I am in the bed day after day for months. I can not prepare haelthy meals for myself.
But also I didn't have other options to cure this monster. Do you have a miracle drug? There is no cure.
That's why I WANT to believe that maybe my body can heal itself. I need hope.

To me, there is a difference between "cure", "improvement", "stability".

May I ask how long you have been sick and who diagnosed you?

 

[Eve18]

Hi @Ewa

you can eat simply without doing cooking and that is based on a raw vegan diet using the dried superfoods that pack the nutrition in and protein shakes.

That's what I'm going to do. Fortunately my husband is very supportive and does grocery for me although he doesn't eat this way.

 

[Eve18]

To me, there is a difference between "cure", "improvement", "stability".

May I ask how long you have been sick and who diagnosed you?

It's huge difference between cure or improvement. I agree. There is no cure in medical world right now. I'll be happy with improvement. I need better quality of life.
I'm almost beddriden with really bad POTS for last 3 years and have CFS since 2006, it started during pregnancy. I'm tired of medical tests, hearing diagnosis from many doctors and trying too many drugs.

 

[james7a]

Leo I understand your frustration, but what other choice do we have? The medical establishment couldn't care less about CFS/ME. It's sad but true.

Leo when you say you have a great diet, please do not do what I did and just compare your diet to the average person. It's what kept me from changing my diet for years. I ate local organic dairy, sometimes raw dairy.. local eggs, ate breads containing low amounts of gluten like Sourdough rye etc. I ate no processed foods. all organic. wide range of all foods and it was not enough. I had to quit all of that cold turkey. It's a pain in the a** and it is hard work but It helped me. It's worth a try for anyone out there suffering because you have nothing to lose other than your last momentary pleasures. I will say that diet alone did not fix my problem, but it helped build towards my recovery in a positive way. It's only when I put every single change together with consistency that I saw changes over the next months and still going.

Seeing as my thread has been bumped I would like to just quickly state my main advice to anyone suffering that helped me alot and that is.. do not stop doing positive changes just because you were not cured. Even if something makes you feel 5% better, keep it in your routine for good. Keep finding things that positively impact the way you feel and keep doing them even if It is alot of hassel. I tried changing single things in my life for periods of 1-2 months and would usually end up saying something along the lines of "I felt a tiny bit better but it wasn't worth the effort. I'm not cured" then proceed to move on to the next single protocol I find on the internet.

If you look at anything else in life wether it is learning a instrument, increasing fitness or anything.. it all takes consistency. I was so desperate during my years of illness constantly trying different single things like gluten free only etc. It isn't enough.

I don't want to offend anyone, but I want to share my experience.

 

[leokitten]

But @james7a I'm almost positive you didn't have to work full time or even part time in order to make ends meet financially, didn't have children or a husband/wife/partner to take care of, didn't have any life stressors or responsibilities whatsoever. You likely got income from somewhere free without having to work and I'm sure got complete support from your parents and family. You had full control of your environment and life and had nothing else to worry about or focus on other than your disease.

What I and others are trying to tell you is this drastic lifestyle change is simply not possible for many PWME, it's just not so its not useful in my mind and I don't like being told that "oh a person cured themselves by doing this" implying that if we all did this we would be cured too.

I've already made so many drastic lifestyle and dietary changes in order to get better, including going completely gluten free, dairy free, vegan and FODMAP for the greater part of a year and it didn't make any difference to my disease and symptoms.

And I don't agree with you about doing anything just to get 5% better, it should always be a cost/benefit analysis. If it is so painful and drastic and costly to do a set of things just to get a small improvement, I think it should be evaluated if it's worth it. For example I used to spend $100s per month on supplements and after doing that for over 1.5 years and seeing that it was only giving maybe a 5-10% improvement if even, I determined it was too much money to spend for that little improvement. It's not worth doing absolutely anything no matter what the cost money or otherwise for any small improvement.

 

[Misfit Toy]

I am not going to say that diet is a cure for ME/CFS...but I have noticed that eating dairy makes me sick. And I have celiac and have gluten issues so gluten is out. When I eliminate sugar, I have less pain.

Does it get me better...as in, well? No, but it does help with my pain and inflammation. I just ate a gluten free cupcake from Trader Joe's and had horrible stomach pain and ran to the bathroom. Diet is a huge player for me, but I think that something started this whole illness off and than diet and allergies to food came on.

The underlying problem needs to be found and addressed, but since that ain't happening...I have to avoid many foods and I have to do that just to keep my head above water.

I have Sjogrens (autoimmune) and I am supposed to get rid of a lot of foods...I am having a hard time with this, but am seriously wondering more and more...maybe it wouldn't hurt?

I always feel better with a salad, and protein and I mean animal protein. Soy makes me sick, milk is THE WORST for me...OMG...it's actually worse then gluten and I am celiac. I am so sick from milk. Pain is brought on in spades by milk.

I think there is something to it...but for many, it's not a cure. It can help but not everyone...it doesn't help everyone. Nope.

 

[Misfit Toy]

James, I think it's nice what you have done. Just watched one of your videos. I agree with the trying to go to bed earlier. SO HARD...and also too much stimulation going on in the world. Agreed. Anyway, glad on your recovery. Congrats!! It's 2 am...need to go to bed!

 

[james7a]

@leokitten I didn't have to work. But I didn't have a life free of stressors at all... my parents got divorced then I lived with my mum alone, then she developed schizophrenia over the years to the point that she believed i was working with the CIA. I used to hear her talking to her self during the night. I used to wake up to her slamming doors that would shake my bedroom. She used to scream in the garden constantly until she got sectioned. It left me in a PTSD state. I woudl flinch from a dog bark and feel a rush of adrenaline. If the postman put stuff through the letter box I would have an adrenaline rush. The whole experience was soul destroying and I lost my mum. But yes.. I was supported finacially and I do sympathize with your situation. I don't know how you manage it.

I would also like to say I agree with you not wanting to spend money on supplements for improvements. Supplements are a waste of money and time. It also gives you a false sense of improvement. When I say go out of your way even for small improvements, I mean diet(taking out inflammatory foods), relaxation, meditation, speaking to someone, dry brushing, detox baths. They don't have to be expensive. For example I dry brush every morning and night, it takes about 5minutes and makes me feel slightly better. It all adds up, I think.

I can only share my experience leo.. and if people are able to try what I did they can. If they cant, they cant. I can't change that.

@Misfit Toy yeah.. I personally think diary is worse than gluten. I used to have so much of the stuff. I used to order from Hook & Son farm in england - raw cream, raw milk etc. I remember thinking oneday.. what am I doing? I'm consuming as much dairy as a baby calf for god sake, this can't be healthy. Afterall, it is meant for a baby cow.

Oh and I would defiantly would recommend getting to bed early. The difference between going to bed before 10pm and 11pm+ is huge.

 

[antares4141]

Yes that would help allot. Many people have really lousy ISP'S.

 

[Xhale19991]

Great thread and I can relate to everything you said.

I am about 75%-80% recovered, and you have touched on just about everything that has helped me get to this point. A great book that talks about many similar theories is "CFS Unravelled".

 

[WoolPippi]

Great thread and I can relate to everything you said.

I am about 75%-80% recovered, and you have touched on just about everything that has helped me get to this point. A great book that talks about many similar theories is "CFS Unravelled".

thank you for mentioning. I did not buy the book but read a summary online and am watching Neuffen's video's.

This resonates with me and my working theories also. The Autonomic Nervous System is out of whack, we need to minimize all the things that strain it (diet, temperature, blood sugar, worries, viral load, toxins etc.) for it to bounce back into shape. Doing this made me recover 80% last year.

This year I relapsed because of two normal life stressors. Seeing Neuffens has relapsed 3 times and did recover in the end I hope I will too, doing the things he, you and James7a talk about. The things I did before I recovered.
Thank you for putting the ANS and its reaction to stressors firmly on my radar again.

 

[Maria1]

james7a

Thank you so much for sharing your story. And I admire your tenacity and bravery for continuing to post and respond through some of the petty politics and jealousies of this thread.

My individual belief is that MY illness is my body giving up after too many physical AND psychological stressors, over a lifetime. I think it's important to allow people their own reality with their own illness. Because, whilst we have symptoms in common, we have different ways of dealing with this horrible, horrible illness.

I don't know what the final trigger was which brought on my illness: anaemia, hashimotos, tick bites, childbirth, my father's stroke, the breakdown of relationships, pushing myself too hard, all of those things, any number of other stressors, or a particular combination of anything unknown, but my body blew a fuse. My only hope of any type of recovery is to attend to the circuit board, checking each and every fuse, whether or not that was the one that was blown in the first place. My feeling is that my approach is working, very, very slowly. Two steps forward, one step back.

Like you, I share your confusion with the right name for this illness. I call my illness CFS/ME because that was the diagnosis I was given by the NHS clinic here in the UK. And, yes, some of the help they gave me wasn't helpful, but some of it was.

I've found other help in other places. The most helpful thing I have found is in acceptance. Slowing my mind, the small joys of feeling my feet on the grass and the sun on my face.

Now, after, nearly 3 years, I try not to dismiss as bullshit things I don't want to hear, a rather unfortunate theme of this thread and this forum. For me, there's usually something to be learned even in the most unhelpful places. From the doctor who dismissed by query about about hypothyroidism with 'maybe you should spend less time on the internet' to the endocrinologist who said he could only get me to optimal health ( He was incredibly patronising, but he did find and treat vitamin deficiencies nobody else had bothered with).

I don't and won't dismiss the psychological aspects of any illness. I don't and won't dismiss the physical aspects of any illness. In refusing to even explore a psychological aspect of any kind this community is doing its members a huge disservice.

Good for you James. And all the very, very best for the future.

 

[james7a]

@Maria1 I was in denial for years about there every being any sort of psychological part to my illness. What changed my mind was realizing that it would not hurt me to try. But of course like I've said many times, people are waiting for this 'one treatment' to cure them and it is not ever going to happen. I've messaged people that have done, for example, the lightening process and felt better or 'cured' but they always relapse because it doesn't address the issue. I really dislike this way of treating CFS too because it makes people think too much about the way they're thinking. Oh god!! I thought this way that's the bad pattern i've been told about god i wish I could stop thinking this way!! there is no ONE cure to this.

I think most people will deny there being any sort of psychological side to their illness because most people do not become ill purely down to psychological causes. But from my experience they do occure during your illness. It only makes sense.. your life has been ripped apart, everything has changed, you can't do the things you want to do, you have to change the way you live. we're only human and of course this is going to effect our mental health. but like I've said, it is only one aspect.

It's interesting what you said. not dismissing things you do not want to hear because it is completely 100% true. My life was shit but I tried to make up for that through video games, movies, food etc. when anything questioned my remaining pleasures I blew it off. It's very important to get to the stage where you're willing to drop any remaining pleasures you have to achieve recovery. I loved cooking. I have been cooking since I was 14. when I stopped animal products + gluten everything I had learned for 10 years I could no longer use... It was depressing. Then video games had to go. Then movies. but in the end giving up these pleasures helped me towards what I ultimately wanted - recovery. engaging your bodies adrenaline through movies and video games is not helping recovery at all... I was completely over stimulated. I felt like my brain was fried from all the stimulation. but again... If i had just cut out stimulation alone i wouldn't of recovered. this was my discovery after trying these single treatments/actions for years.

My advice is simple and easy to dismiss. But once you start doing everything I'm talking about you will realize although it may be simple.. it is very hard to put into practice. it took me a lot of discipline.

but thank you for the kind words maria

I did a interview with CFS unravelled some time ago but he has not uploaded it yet but keep your eyes open if you're interested.

 

[ukxmrv]

I don't think that many people do deny the psychological side to either a start or the perpetuation of their illness - if that is appropriate to them

When I developed ME there was little in the way of treatment (30 years ago) and the psychological and lifestyle side was one of the few things I could do.

The problem was for me, that this made no difference at all to my physical illness. It was a waste of my time, money and energy.

Would have been better spent on making myself comfortable and resting up.

We are all so different, there are no tests to prove that we all have the same disease. Mine was an acute viral onset. I was well before ME struck. Lifestyle and psych factors did not play a part unless they are ones we don't know about yet.

If I could go back in time I wouldn't try the psych stuff, the diets etc but hindsight is a marvelous thing... as they say.

Obviously, it is not the same for everyone. I have complete respect for James7a. He found what worked for him.

Just wanted to point out that I did try the psych approach and so did many other people in my ME support group at that time. It's not through lack of trying or being frightened to try - we were all desperate to get better and would try anything then.

From meeting PWME at support groups I don't see that much has changed.

 

[A.B.]

Trying to find a solution on the psychological side of things was the first thing I tried. After years I had to admit that it didn't serve me well, wasted my time, created unrealistic expectations and contributed to depression. Nowadays I'm very critical since a lot of claims are being made in this area that cannot be verified in any way. It's a belief system that is attractive because it gives the illusion of being able to explain and understand everything that science fails to explain.

So much for the "refusing to even explore psychological aspects" part. I think I explored this area of my life very well - I just came to conclusions that not everybody likes.

 

[Valentijn]

It's a belief system that is attractive because it gives the illusion of being able to explain and understand everything that science fails to explain.

And the illusion of control of course. If some cognitive and behavioral changes are all that is needed to avoid indefinite illness with severity disability, then people can feel secure in their ability to recover from or avoid illness. The world becomes safe again, right as things were starting to look a bit random and uncertain

 

[A.B.]

And the illusion of control of course. If some cognitive and behavioral changes are all that is needed to avoid indefinite illness with severity disability, then people can feel secure in their ability to recover from or avoid illness. The world becomes safe again, right as things were starting to look a bit random and uncertain

In some ways, psychology has replaced religion. It looks inward to the powers of a mysterious mind, rather than outward to the powers of a mysterious God.

 

[Wayne]

Hi @james7a,

Just wanted to take a moment and thank you for taking the time to continue to share your experiences—in what I consider to be a thoughtful and respectful manner. Thought I'd make a few brief comments on some of the things you brought up:

Then video games had to go. Then movies. but in the end giving up these pleasures helped me towards what I ultimately wanted - recovery. engaging your bodies adrenaline through movies and video games is not helping recovery at all...

I never got into video games, but I did regularly play (way too much) a couple of card games (which I got exceptionally good at ). For quite a long time, part of me suspected it was over-stimulating and I should play less, but another part of me rationalized it as being a good way to keep my significant dysfunctional brain capabilities from atrophying any further.

I eventually discovered that when I tried to cut back on my playing time, I went into a sort of withdrawal mode. It then became clear to me I was dealing with a stimulation addiction, and I needed to stop it—which wasn’t easy to do, because when I would first start playing, I would find it to be very relaxing and calming. Sort of like a person with a drug addiction finally getting their fix. Just want to stress, this was my experience and most likely would not be the case for everybody with ME/CFS.

I discovered that quitting those card games was a VERY important step for me. My next step is to become more disciplined with what I watch on TV, and other things that produce even small amounts of stress—like going out into the world for more than very short periods of time.​

But once you start doing everything I'm talking about you will realize although it may be simple.. it is very hard to put into practice. it took me a lot of discipline.

I agree with you that it’s important to do as many little things as we can identify (and afford) to keep making incremental progress. In my mind, no amount of progress is too small, because I have the hope that the right combination of very small things will eventually get me “over the hump”. Which reminds me of a dream I often have.

I’m in a vehicle slowly going up a steep hill. As I get closer to the crest of the hill, the vehicle slows down more and more, and frustratingly, I never make it to the crest. This seems reflective of my belief that if I can figure out the right combination of things to get me to my own personal health crest, I can start to roll down the other side toward better and better health. Interestingly, I’m inclined to believe that if this happened, I might be able to let go of many of the little things that were important for me to reach that crest in the first place.​

I did a interview with CFS unravelled some time ago but he has not uploaded it yet but keep your eyes open if you're interested.

I would appreciate it if you would post a link to your interview when it becomes available. A note of caution however to those who may navigate their way to the CFS Unravelled website. I went there a couple years ago or so, and found it to be extremely frustrating, almost to the point of infuriating. If there’s one “psychological” issue I deal with, it’s my atypical need for people to “get to the point”, and this man—from my own perspective—simply would not get to the point.

After watching a couple of the videos, I ended up feeling he really didn’t understand how the brain of a person with CFS works, which doesn’t have the luxury of listening to—and processing—minutes and minutes of extraneous off-the-main-point kind of ramblings. Again, just my own experience. I would watch your interview however, as I would assume you’re doing most of the talking. But in keeping with my own resolve to minimize stress in my life, I just can’t watch or listen to his other videos.​

-
Didn’t realize my reply would be so extensive. Again, I appreciate your replies, and the discussion in general on this thread.

Best, Wayne

P.S. @Maria1 — Excellent post.

 

[panckage]

I wonder about these make 100 changes and then finally getting better. The first time I had CFS I got gradually worse for a year or so. Was rock bottom for maybe 6 months and then took a year to gradually get better. I didn't make any major changes, just did the best I could. I kept strength training the whole time. At rock bottom it meant doing 1 set of 1 exercise once a week (maybe 60s in duration) at a substantially lower weight to before my illness.

People who claim that things made them better, I really wonder if it was just the natural progression of the disease...