Does this mean anything? (Multiple remissions in one year)

[SpiralOut]

I've been moderate for a little over a year. During that time I have had:
a 2-week remission
a 4-day remission followed by 4-day crash followed by 3 week remission
a 1-week remission

Just wondering how unusual it is to have this many symptom-free periods, and/or what if anything to make of it. Or is it just within the realms of normal variance?

 

[VisualEffect]

Hello SpiralOut, your temporary remission means completely 100% health return? Or symptoms diminishing to the point you can fully ignore them and live a normal life? Sorry I don’t know what your remissions means, but in my case my symptoms are fluctuating and sometimes I feel almost normal for several hours, but my heart pounding and overall high sympathetic tone never goes away.

 

[SpiralOut]

Hello SpiralOut, your temporary remission means completely 100% health return? Or symptoms diminishing to the point you can fully ignore them and live a normal life? Sorry I don’t know what your remissions means, but in my case my symptoms are fluctuating and sometimes I feel almost normal for several hours, but my heart pounding and overall high sympathetic tone never goes away.

As far as I can tell, the symptoms disappear entirely. I haven't 'stress tested' myself to the extreme, but it seems that I can walk for any amount of time (usually 20+ mins will crash me) and concentrate on readying or studying for any amount of time (usually 1-2 hrs will crash me).
Oh forgot to add: I did a house move (yes the remission gods smiled on me at that time, amazingly). No furniture but lots of carrying up and down stairs, at the end of which I was just 'normal tired'.

 

[Wishful]

In my first year or so, I had several temporary remissions, although they lasted only 'for the rest of the day'. Over the next few years I had occasional temporary remissions triggered by a few different things, such as prednisone, cumin, and T2 (or iodine). The remissions didn't lead to any way to maintain them or trigger them on demand; they just boosted my state of mind by proving that it was at least possible to get free from the symptoms. I haven't had one in ten years or more. *sigh* I miss my temporary remissions.

I think of ME as being an abnormal state that we can get locked into. It's possible, especially in the early stages, to temporarily break out of that state. Being completely evil, ME finds ways to prevent us from getting out of the ME state even temporarily. I suppose it's possible for some people to break out and stay that way, but that means that they believe that they 'just had a bug' or whatever, and thus never get counted as people who developed ME.

It's possible that if you did exactly the right things, you might keep getting remissions or even avoid further ME ... but no one knows what the exact right things for you are, so don't stress out about it or later on blame yourself for not doing whatever it is you didn't know you should do. In the meantime, enjoy your temporary remissions, and keep notes on what might have triggered them or caused them to end (and hopefully post them here so maybe we'll learn something that might help someone else).

 

[godlovesatrier]

I get periods where I'm convinced my immune system, my inflamatory levels and my Ros are vastly reduced. Also hot weather helps with this. This means I can do more. But on the Joshua liesk protocol my baseline is consistent. If I can do 50 minutes one day I can do it again 2 or 3 days later.

I guess what I'm trying to say is you don't sound like you're having a typical ME relapse remission because these last to my knowledge long periods not days or weeks. Makes me wonder if you've possibly got something else going on. Hard to say tho!

 

[SpiralOut]

I guess what I'm trying to say is you don't sound like you're having a typical ME relapse remission because these last to my knowledge long periods not days or weeks. Makes me wonder if you've possibly got something else going on. Hard to say tho!

My case doesn't appear to be postviral (unless I had something asymptomatically) so in that sense is atypical to begin with (there is a physical trauma incident which is my best guess as to the cause). But yeah it's hard to be sure of anything it seems.

 

[Judee]

So to me it's very encouraging.

If you have anymore "remissions," I personally would suggest challenging yourself to practice aggressive rest therapy during it, with the goal of trying to extend it even longer so like instead of 2 weeks (your current record), try to extend it to 3 weeks by resting.

I know it would be the opposite of what your brain would want to do. We try to play "catch up" during our better times.

However, I wonder if doing this could help your body to heal long-term like maybe even to cross over a "metabolic trap" line at some point to a place of recovery.

It would also be an interesting experiment. Please do let us know if you decide to try that and how it turns out for you.

 

[godlovesatrier]

So you have PEM, insomnia or sleep disturbance, breathlessness, muscle fatigue, brain fog, neck pain or coat hangar pain or both, abdominal pain or food intolerances that are new dairy/gluten?

Those are some hallmark symptoms depending on disease severity.

Yes it's very hard figuring out what's wrong with us most of the time 😭

 

[SpiralOut]

So you have PEM, insomnia or sleep disturbance, breathlessness, muscle fatigue, brain fog, neck pain or coat hangar pain or both, abdominal pain or food intolerances that are new dairy/gluten?

PEM yes (both physical and mental)
Insomnia very badly (only since onset of other symptoms)
Muscle fatigue/sometimes jitteriness but not much pain luckily
Brain fog
Dairy and gluten intolerance but the dairy at least was already the case

 

[SpiralOut]

I like the idea @Judee and will do just that