Oasis of complete normality. But then gone

[Wolfcub]

Does anyone else get days like this? I mean a day of feeling completely normal. I have had four this month usually spaced 2 days apart. I begin to believe I dreamed about being unwell. I begin to believe it is all going to be OK now. I am normal, like my usual self, everything is good. Not even a bit exhausted, just steady.

And then from no apparent cause, a day or so later it all comes back. Shakiness, weakness, can't do a lot, weird appetite, feel queasy sometimes, twinges over eye etc. And the most awful thing....a Soul-less feeling, like can't communicate with my own Heart or anything has any meaning because I'm so distracted by the horrible feelings (can't quite put that into words.)

So, it's all so random and I can't trace any triggers. But what are those sudden days when everything is perfectly normal?? Even though you might not have rested seriously the day before.
Yes I am grateful for them but it makes no sense. Surely when you are ill, it doesn't just "go completely away" randomly for a day then come back, then go away randomly again 2 days later....does it? Or is this the usual "crash" scenario?

This is feeling like the trickiest situation and very unstable and unfathomable. It almost feels like there's a mean intelligence behind it which likes to wear down peoples' spirits with false hope. (Yes I know I'm being silly now.)

 

[alex3619]

Temporary short remissions are common, but not understood. I have not had one for nearly two decades now though, but this year marks my 50th anniversary of my probable ME trigger.

My remissions were usually only for about six hours.

 

[Wolfcub]

Well that gives me a greater perspective @alex3619 A day is more to be grateful for than six hours. When this first began I used to get these "eye of the storm" things when I would feel totally normal for maybe....30 minutes or an hour.

I am sorry you have had 50 years of this.....kind thoughts to you.

 

[hmnr asg]

I think you should be happy to have these brief reprieves. It's a proof that there is no permanent damage and you are still capable of feeling normal.

 

[Pink]

Yes I get a few hours here and there and get so excited and then poof even worse than before.
I guess enjoy them while u can

 

[Moof]

I think this could be connected with sleep. For instance, if I sleep in the mornings between 6am and 9am, my symptoms are much worse; a night with no sleep at all improves my ME enormously (though of course that can't be sustained for long). Early on in my illness, if by some accident I avoided these phases of sleep, I'd feel pretty much recovered. I wonder if the same thing is happening to you?

 

[percyval577]

So, it's all so random and I can't trace any triggers.

May you look at the combination of sugar, fat and manganese, all of wich would be low of intake if you would feel well then. (Manganese espacially in beans and other puls).

I would be glad if you could tell anything.

Thanks and greetings.

 

[Wolfcub]

May you look at the combination of sugar, fat and manganese, all of wich would be low of intake if you would feel well then. (Manganese espacially in beans and other puls).

I would be glad if you could tell anything.

Thanks and greetings.

Thank you @percyval577 I shall do that. I don't recall especially feeling worse when I have had lentils or beans the day before, but I guess I need to keep a food diary. My sugar/fat intake is more or less the same every day. But I'll start a food diary and see if anything could be connected.

 

[Wolfcub]

I think this could be connected with sleep. For instance, if I sleep in the mornings between 6am and 9am, my symptoms are much worse; a night with no sleep at all improves my ME enormously (though of course that can't be sustained for long). Early on in my illness, if by some accident I avoided these phases of sleep, I'd feel pretty much recovered. I wonder if the same thing is happening to you?

I sleep almost always the same every night, and exactly the same as I have done for years even when really well.
The one thing I seem to be able to do is sleep well. There are occasional "blips" where I have had a bad night and didn't sleep until 5am or something but they are not common. Then I might get 5 or 6 hours sleep but don't feel any worse for it. And may or may not "crash" the next few days.
I also deliberately stayed up all night on two occasions as an experiment and like you, felt better in many ways the next day (though terribly tired of course) I would sleep 10 hours the next night and wake up feeling like I'd been under an anesthetic but no worse or better that day. Then the sleep deprivation hasn't seemed to have caused a major crash a day or so later.
That's what I mean about the crashes / feeling much better being so random.

 

[Mary]

This is feeling like the trickiest situation and very unstable and unfathomable. It almost feels like there's a mean intelligence behind it which likes to wear down peoples' spirits with false hope. (Yes I know I'm being silly now.)

I don't think you're being silly. The image of a giant child tearing wings off of insects for fun has come to mind for me, that we are being tortured for no reason, just on a whim.

My functioning can vary widely from day to day also, though I do have days of feeling normal, which as @hmnr asg said above, does give me hope, that I'm not permanently damaged. But even on those good days, I'm still limited to 3-1/2 to 4 hours of light functioning; otherwise I will crash the next day.

I have found some of the causes of my different levels of functioning. I have trouble getting enough potassium into my body; if it dips low, it causes fatigue. I am generally on top of it, avoiding the worst of the fatigue and my right foot is an excellent barometer of my potassium levels - it starts to twitch when they start to drop.

A different electrolyte which is trickier for me is phosphorous. Low phosphorous can cause severe fatigue - mine dropped low after I started taking thiamine, only I don't have anything like my right foot twitching to give me a heads up as to what is going on re phosphorous. I've recently discovered that my phosphorous levels are more precarious than I thought and now have to take a phosphorous supplement several times a week. But it has taken me a long time to figure this out. I used to wonder why sometimes I could go to the grocery store and feel halfway normal though had to rest for hours afterwards; but other times I'd go and drag and it would be torture to get my shopping. And I think now that my phorphorous was low those days. There's something called phosphate diabetes which may affect 10% of persons with ME/CFS - see this - I haven't seen any later studies and yet I feel it may affect even more than the 10% mentioned here - it has nothing to do with regular diabetes.

So something like this may be going on with you. There are so many variables! But I think it all has one source - and I am crossing my fingers that the metabolic trap theory will pan out.

 

[ljimbo423]

So, it's all so random and I can't trace any triggers.

I have had many short reprieves from my symptoms. Usually they don't last more than a few hours to a day or two tops. Like you I often become very hopeful that I have turned a corner but not yet!

I am becoming more aware of those times and realize that they will be temporary.

If I over do it physically though, 2 days later I get hit with PEM, just like clockwork, every time.

The day after I do too much I'm okay, it takes 2 days every time for the PEM to kick in.

I have also found that many things that change my bodies chemistry, like alpha lipoic acid, herbs that kill bacteria in the gut, coq10 and many others, give me a big boost of energy that often overrides many or most of my CFS symptoms.

Again though, it is temporary but nice to have!

Jim

 

[Wishful]

Yes, I've had this temporary remissions too. As hnmr asg said, it's useful for showing that remission is possible. I didn't figure out what triggered some of the remissions, but prednisone and T2 (or iodine which converted into T2) triggered very similar temporary remissions.

I strongly recommend keeping a food/activity/symptoms journal. Without it, you'll forget some details and misremember others. With it, you can discover correlations that you otherwise might miss.

Enjoy your remissions while you can. Might got less frequent over time, and my last one was many years ago.

 

[Mel9]

This happened to me this week too. I am trying to make sense of this.

I had been feeling awful for months mostly bed bound but able to get up for an hour or two each day. I tend to make this constant flu-like feeling my new ‘normal’ and lose track of what ‘well’ feels like.

Then last Saturday I felt very different when I woke up. Every sign of ‘flu-like’ symptom (aching body, brain fog, terrible fatigue) had completely disappeared!

I felt so good we decided to go for a very short (500m) bushland walk along our creek. I walked slowly, careful not to overdo things. There was a little hill at the start of the walk that increased my heart rate to 135 bpm (allowed) but after that I was down to 110 bpm and I felt fine.

Next morning, Sunday, felt like day 2 of complete remission. Complete absence of all symptoms. I pottered around the house and later, because it was such a nice sunny day, I then tried to repeat the walk.

This time I only walked ten metres before realizing I couldn’t make it. Although I still felt fabulous, in a complete absence of my horrible sickness feeling, I was physically unable to walk at a normal pace because My muscles were completely depleted of energy. Later I found that my HR had spiked at 155 bpm over that short 5 minute walk.

Is this similar to the two day stationary bike test - patients might be ok for the first day but are terrible on the 2nd day?

The ‘remission’ was completely over by Monday with severe PEM: so bad I had lost the ability to walk and will probably be in complete bed rest this week.

 

[percyval577]

Sometimes I think there is something like a changing lattice in the complete brain, and it changes when we are processing all the informations we gathered the last days.

And when a new conformation of lattice arises and is too different to the former one/ones, the brain is knocked somewhat out (possibly causing or allready including some hype as well).

Then I think the changings of such lattices are exaggerated in me/cfs, but sometimes they match nevertheless or are even slowed down with their exaggeration (depending eg on food, as I guess) The main contributers might be iNOS (<-- manganese) and maybe AChE (<-- fat and sugar).

I excuse for being somewhat harsh these times, I often feel well now but I find only slowly the way through communications. Your effort @Wolfcub is of course very much estimated.

 

[Wishful]

@Mel9 , I'm guessing that you're wondering whether the remission would have lasted longer if you'd taken it a bit easier, worked up to it more gradually, etc. My guess is that it wouldn't, though there's no way to be sure, since we can't re-run the experiment. I'm not sure whether any of us can hold back from enjoying such remissions by going out and doing something. If someone does have such a remission and does manage to not push their usual limits, please do let the rest of us know whether it extended the remission past the usual hours or day or two. We'll probably applaud your amazing willpower too, unless you were prevented from being active (stuck in a body cast, kidnapped and tied to a chair, etc).

 

[Mel9]

Yes, I do lack that will power!

 

[Wishful]

Yup, if you suddenly feel well, how can you not go for a walk in the sunshine or whatever your choice is? If it was raining with gale-force winds that day, I'd probably overdo housecleaning. I lack the willpower to just sit and read if I'm feeling that well. Actually, I'd probably go for a walk in the gale anyway, saying 'Wheeee!"

 

[Dechi]

Yes, it happens to me. To check if I’m « cured » I just do a few squats and it doesn’t take more than 10 seconds to feel muscle weakness and crush my hopes, unfortunately !