Has anyone else reached a recovery 'ceiling'?

[ChrisD]

In January 2017 I was bedbound for two weeks then housebound for months, then able to go out for a couple of short strolls a week, and by Summer 2018 was able to sustain daily 30 minute walks. Now in January 2019 I can typically go out for 45min to one hour a day but also feel fairly normal around the house and complete tasks albeit always feeling quite lethargic.

I can also go out with friends for 2-3 hours, sometimes 4-5 and expect a difficult night after and a bad day the next with PEM, but can trust that I will find my rhythm and baseline/plateau again.

I've worked extremely hard with diet (Ketogenic), Broad spectrum probiotics, Mitochondrial supplements, Cannabis Oil and other things that have all helped me on this recovery path.

But really my recovery rate has slowed down over the last year and I feel trapped below this ceiling that I just cannot break through to make any further improvement. I would still say that I am only at 10-15% of full ability or where I would like to be. It's extremely frustrating.

Has anyone else experienced this frustration?

 

[percyval577]

I have some frustation, though it seems that I am still on a good way.

I started my diet in late summer 2015 and was for three months rather very good (if I hadn´t made many mistakes). When I relapsed it was not a huge surprise. Being optimistic I hoped for a success within half a year, pessimisticly I had two years in mind. I had an infection in mind, but now it seems that a pathway has become altered from two infections which might not have been acute at the same time.
The course turned out to be a bit difficult: Instead to get better in every respect I experienced a progredient gain in body feelings but a nonprogredient worsening of vision and thinking. This is not without sense, because these tasks are codified over huge areas in the brain.
Now I think it might take six years altogether because I felt for five years very bad, and one year might occure for the rest of my illness from before, as I was quite good than! So, three more years.
Or it´s too late and restricted now.
Recently then I discovered additional influences which fit into a more complete story logically enough. I hope it will hold the water, but I am careful with expecting any sudden miracles.

 

[Wolfcub]

Yes I have something perhaps similar....
With me I'm not sure if the feeling is frustration, or some other thing, like dashed hopes.

After a sudden onset of what appeared to be a flu virus/post viral syndrome...leading to a constant condition, I spent at least 2 months initially with few real "remissions" except maybe a few hours at a time.
Then more months came, and remissions started to happen! They might last 3-4 days at first, then a week or two. During them, I felt a bit delicate but could function pretty well, with some limitations.

Every time I believed I was "over it"....getting so much better....healing!
(I have always healed from everything and have always been fit generally.)
Medical investigations all came back normal. It was gently suggested that I might have anxiety! Well, that wasn't pushed by doctors, but it was considered as a possible solution! (despite having gone through literal hell and high water many times in my life without any anxiety disorder as such!)
To my view, knowing myself, I knew for sure that something was PHYSICALLY amiss.

Then after each remission when I really felt it was all becoming history....the symptoms and exhaustion and weirdness, would all come back again.
Every time that happened it was very discouraging.

Now, I don't like saying this. Every time I have said it before I have been proved wrong. So I shall just whisper it and hope "Providence" doesn't hear me.
But I do want to whisper it in case it might give others a shred of hope....

Since about the middle of December I have definitely improved. I have still had "blips" when things came back, but smaller ones. Remission times do seem to have extended.
I also had very deep Beau's lines on my left thumbnail, which were there since the beginning, and new ones regularly appearing. They coincided exactly with times I had felt dire.

Now I have half a thumbnail without them.
Ssshh.....I am only whispering that.

 

[ukxmrv]

Yes, getting stuck at a plateau seems to be a constant feature of the last 30 odd years. I won't call it recovery as these have no where near normal or at all what I was before.

I can get to to a certain level of functioning to find that out of the blue I get a terrible flu or food poisoning, have an accident or get cancer and then I am back to being largely house/bed bound.

The worst thing for me is to try and do more exertion or undertake a program to "formalise" my exertion or work up from my current level. Never again.

Trying a new drug or supplement can also make my physical health worse.

Sorry, nothing to suggest apart from not pushing it and leaving your body time to see what happens next.

 

[Wishful]

Ummm, since this is ME, there's no reason to expect recovery to continue upwards. We simply are stuck in a 'feeling lousy' state, which can temporarily go up or down, or change a bit over time, but otherwise remains. In my 18 years of ME, I've had periods of worse symptoms, and some have gone away on their own, while others went away after discovering which foods or nutrients to avoid. Many PWME have far lower baselines, being stuck in bed all day, so those of us with higher baselines should simply appreciate what we are able to still do.

If you've 'picked the low-hanging fruit' of recovery, don't be overcome with frustration that improvements will be slower; continual recovery isn't guaranteed (or even expected). Also, there's still hope for discovering something--an herb, a meditation technique or whatever--that will give you a significant improvement. I didn't discover my PEM blocker (cumin) until year 15 or 16, so it's still possible to discover new effective treatments or things to avoid.

Think of how lousy you'd be feeling right now if you hadn't discovered those things that have helped you recover so far. Appreciate them, and continue to look for new ones, and hope--without expecting immediate results--that you will find some.