Anyone had remission/significant improvement from exceptional pacing?

[AdamS]

I know that GET is a load of nonsense but I wondered if anyone has had a significant improvement in functioning from exceptional pacing and specifically completely avoiding any crashes, relapses, PEM etc for a significant period of time?

A lot of you probably know my story by now, I think my ME was creeping up slowly for a year or so after a virus/infection until I finally had a major crash at the gym 6 months ago which has left me at about 4/10 and unable to work. Recently i've been pacing a lot better and my last major relapse/PEM episode was exactly 1 month ago. I feel like my progress has hit a ceiling though, i'm still at about 4/10 and can't really see that improving, my day to day symptoms are quite unpredictable.

In terms of scope for pacing properly, i'm in a very fortunate position, i've moved back home and don't have much in the way of responsibilities at the moment. My sole focus is recovery.

I'd be interested to hear if anyone has been at a similar level of functioning and managed to improve through strict pacing etc.

Thanks Adam

 

[halcyon]

I don't see it as a method for improvement at all. It's not enough. It's simply a way to maintain whatever level of function you're at now and not continue to get worse and worse. Even then some of us will get worse no matter what we do.

 

[AdamS]

Yeah that was my thinking too, it certainly matches up with my experience of pacing thus far, that it maintains rather than improves functioning.

I guess i'm just fishing for a bit of hope. I've been getting super down recently.

 

[Jesse2233]

Don't lose hope my dude

Dr Sarah Myhill has observed a pattern of recovery from resting: http://www.drmyhill.co.uk/wiki/Pattern_of_recovery

Off the top of my head @taniaaust1 experienced a 3 year remission after very aggressive resting

And @Kimsie has a interesting theory on this: http://forums.phoenixrising.me/inde...ods-and-can-cfs-people-get-really-well.34385/

I posted a poll with a similar question: http://forums.phoenixrising.me/inde...-periods-of-rest-can-lead-to-remission.50202/

 

[Dechi]

I've been resting aggressively for close to 2 years now. More so after the first 6 months; it took me a while to finally accept that I couldn't train unless in a very controlled and minimized way.

I had pretty much stopped crashing for 3 months but then I had demanding testing and stressful situations that made me crash in december, january, february and march. Now I am just starting to go back to my previous baseline. But this is very fragile, and I know that any intellectual, emotional or physical stress will trigger crashing again.

It's pretty much a roller coaster. So yes, aggressive resting and pacing helps, but unfortunately life never stops bringing challenges and hardships that are very counterproductive.

 

[PennyIA]

I would agree that it's more of a management tool for me, to attempt to reduce crashes.

But, when life gives you a chore that you can't (or shouldn't duck), well, pacing only works as well as it can when you're following it. Says the woman who helped her husband's family for four hours today trying to strip off 12 layers of wallpaper from a recently passed Great Aunt, followed by 5 hours trying to get the worst of her 13-yr old (my room isn't that bad, yeah right) sons' bedroom. I'm not moving for the rest of a week after pulling this. :-(

 

[Alvin2]

I find pacing wears out the carpet more quickly

Seriously though i don't know because i have to overdo it to survive, though i do wonder what would happen if i could stay within my "energy envelope". The big problem is that the worse i get the more i have to overdo it which makes things even worse. I'm not sure where this ends...

 

[Mesurfer]

I lived in constant PEM basically for about 12 yrs due to trying to exercise my way to health. When i started using a heart rate monitor I got some of my brain back and an improved quality of life but pacing cut down my activity level over the long run and now I can do much less. For me it is a double edged sword. Bottom line for me is this illness will take what it wants one way or another. It simply can not be beaten. It's been a long and grueling downward spiral and I am one of the lucky few that all the recourses to put towards it. I've seen top drs. Nothing helps...

 

[helperofearth123]

The way I see it pacing helps prevent a worsening of PEM, but we live in a state of perpetual PEM even by doing nothing. Just being awake and cognitively clear-headed requires more energy than a person with CFS/ME has available.

So if someone is on a downward trajectory and getting worse, pacing might slow the worsening down a bit, if they are level, pacing might help keep them level or improve slightly, if they are improving, pacing might help speed up the improvement slightly. So yes not walking too far or not reading too much stops a worse PEM reaction, but it doesn't improve the underlying condition thats causing the problems.

 

[Mesurfer]

Could not have said it better myself.

 

[TiredSam]

Getting into strict pacing is the best thing I ever did. It certainly hasn't led to remission, but I don't have bad days anything like what I used to have 2 years ago.

After months of strict pacing last year I had a noticeable improvement in the autumn (20 days without a headache!), in the first couple of months of this year I went downhill a little (because ME does what it wants and laughs in your face just when you thought you'd established a little control), and I've just picked up again in the last 2 weeks.

At the same time my activity level has gone down and down - but that's pacing. So just about all my hobbies and social life have gone, I work about 15 hours a week and spend the rest of my time on the sofa, never voluntarily go for a walk etc. But during a good phase I get to feel normal a lot of the time, ie symptom free. As long as I don't get off the sofa. That's a trade-off I'm prepared to make, there's nothing I want to do that's worth feeling that shit for days on end for.

So pacing hasn't given me a significant improvement in functioning, in fact the reverse, but it's given me a significant reduction in symptoms. I think. I consider my life to be improved now in comparision to when I was more active but had more symptoms. And after a while I've found more things to do on the sofa, including work (preparing lessons, writing emails etc) and new hobbies (anything that can be done on a laptop, computer programing in my case).

 

[AdamS]

Cheers for the insight @TiredSam and nice to hear that you're doing some programming. I used to be a Software Test Engineer and dabbled with a bit of development myself in my former life!