Poll: did strict pacing help you?

[GlassCannonLife]

I have been badly crashed for a few months now, which has meant I've been using 125-300 mg of pregnenolone to prop up my adrenal function along with a steady morning 8 mg hydrocortisone. My endocrinologist is a fan of pregnenolone as it doesn't cause adrenal suppression but helps a lot with the borderline insufficiency I get when I crash.

Over the last 5 or 6 weeks I've been tracking my intake of pregnenolone (I take it as-needed), and I've been slowly improving and needing less (aided also by IV vitamin c infusions that seem to be quite helpful). I had another flare up a week or so ago but I am finally starting to trend down in requirement.

Anyway not meaning to ramble on, but the rate of change is a little depressing but also made me wonder a few things:
- is this actually the rate at which I would be improving globally (not out of a crash) if I was to pace perfectly ie not trigger any symptom worsening or PEM? It is around maybe 1 point of the CFIDS Scale per month (if I don't flare up!)
- is there something different between crash recovery and overall global recovery? Why do we seem to reach these arbitrary "set points"? Or are they simply illusions but we immediately overdo things the instant we feel less symptomatic?
- I have seen some stories of people recovering substantially (or completely) from pacing over long periods of time (years). I couldn't find a recent poll here though.

I was hoping to use this thread to discuss your experiences with proper full blown successful pacing and its effects on recovery. I realise we all try to "pace" day to day ie not overdo it, but I am referring to the strict and highly specific style of pacing where you never (if possible) cause any symptomatic worsening over extended periods.

Please expand on your responses in posts as appropriate. Thank you!

 

[TinaYesen]

Re my vote above, by strict pacing (to me a last-resort coping mechanism I would not call a treatment, as it's essentially barely living) means resting and sleeping in bed 18 - 22 hours/day. I did this for 8 weeks on two different occasions the last two years and both times after 8-10 weeks I improved enough to the point where I was only in bed 12-14 hrs/day, and could leave the house a couple times/week. I hope the info helps.

 

[BrightCandle]

Staying within my energy limits definitely reduces my suffering. Crashes are horrible, I have a lot less energy, barely enough to even functionally survive, and they hurt a lot. But it has no lasting benefit that I can see, I have been pacing myself for years but all it does is stop me crashing and suffering badly I don't recover in any way from it. I just don't get worse if I pace well.

 

[TinaYesen]

I have been pacing myself for years but all it does is stop me crashing and suffering badly I don't recover in any way from it. I just don't get worse if I pace well.

Same here.

 

[Wishful]

I never tried strict pacing, because I had no need to. I simply avoided (when possible) activities that were likely to cause PEM. Resting beyond that never added any benefit. Also, I never crashed; my PEM episodes were all a day or so of inconvenience.

 

[hapl808]

Staying within my energy limits definitely reduces my suffering. Crashes are horrible, I have a lot less energy, barely enough to even functionally survive, and they hurt a lot. But it has no lasting benefit that I can see, I have been pacing myself for years but all it does is stop me crashing and suffering badly I don't recover in any way from it. I just don't get worse if I pace well.

Pretty much same here. Pacing usually lets me recover (eventually) from crashes, and pushing through has caused many of my more permanent crashes (from mild to moderate, moderate to severe, etc). I'm not sure there's a lasting benefit other than not making yourself permanently worse? Hard to say I guess.

 

[Float]

Pacing out of necessity. If I'd had a Healthcare provider explain spoons then I might have used it as a prescribed treatment. What happened after a while, without diagnosis, was I just noticed the PEIS and watched out for it.

I also just couldn't do more than what I could, as I had pushed pass that line for many years undiagnosed, and there was no buffer zone left. It was tank empty to tank 5%. Then empty etc. And by avoiding burnout (I started to recognize when this was happening) slowly I got 10% now and again.

But the game changer was an off label med that increased blood pressure and lowered heart rate. It helped avoid the harshness of symptoms on the body, so the body recovered and the set state improved. It helped more than any pacing.

Pacing however is essential imo. It might work better as an earlier intervention to help avoid worsening. Though who knows they need Pacing until it's beyond early intervention?

We need more recognition of mild symptoms and fear of severity of consequences if you push through. Society is set up to push through and get worse.

And yes global recovery takes many years and yes crash recovery exists.

Crash recovery is 5% to 0% to 5%.
Global recovery is 5% to 0% to 10% to 5% to 10% to 15% to 20% to 25% to 20%, to 30% sone days, to 25%.
Then 25% most days, and on we go, until you can maintain say 70% on 6 to 7 days per week, by knowing your body, listening to it, and perhaps with the support of meds.

At this point maybe you tentatively add back in physical activities you used to do and have got back to work. You have to layer on 'normal' things slowly to maintain the gain.

The trap is to feel well then suddenly kick off a social life, moderate exercise, work, relationship etc all at once. One thing at a time, maintain 6 months, add another.

We are pacing our successful recovery (instead of thinking of it as limiting daily activities).

 

[hapl808]

But the game changer was an off label med that increased blood pressure and lowered heart rate.

What was the medication? My blood pressure is usually low and my heart rate is always very high.

We need more recognition of mild symptoms and fear of severity of consequences if you push through. Society is set up to push through and get worse.

I do think that careful pacing early on might have let me continue at mild instead of constantly worsening down through moderate and into severe.

 

[GlassCannonLife]

Thank you all so far, that's very interesting! Seems like some benefit more than others.

I think I will have to give it a proper try when I get out of this flare as I really struggle to stay absolutely symptom free when trying to pace/live (always overdo it if even just slightly).

I do remember a specific story on reddit where the lady's husband was mostly bedbound and improved with very strict pacing over 2 or 3 years to mild-moderate.

 

[Wishful]

I do remember a specific story on reddit where the lady's husband was mostly bedbound and improved with very strict pacing over 2 or 3 years to mild-moderate.

The problem with that kind of story is the lack of scientific control or ability to repeat it. Was it the pacing that made the difference, or was it something else in that 2-3 year period? No way to prove it was or wasn't.

 

[GlassCannonLife]

The problem with that kind of story is the lack of scientific control or ability to repeat it. Was it the pacing that made the difference, or was it something else in that 2-3 year period? No way to prove it was or wasn't.

Yeah I agree, I feel the same about any treatment that is done for years, eg antivirals, the autovaccines, etc.. So much can change in that time. I guess if they weren't doing anything treatment-wise, pacing would be the easiest thing to test in this way - ie no other interventions were done just pacing.

Other extended-duration treatments are always confounded by pacing being a factor.

 

[Judee]

This is a good poll. I'm glad you posted it.

I don't remember who it was...I've tried to find the post again a couple times over the years but one member said he did 15 minutes of activity and then 45 minutes of absolutely nothing for every hour he was awake through the day.

During the 45 minutes, I think he just lay still in a dark, quiet room and did absolutely nothing. He said he was bored silly during that time but kept it up.

If I remember correctly, he did that for between 3-6 months straight and improved enough to be able to go out and eat in a restaurant with friends.

I wish I could remember who that was to be able to give you better specifics and to make sure I'm telling it correctly.

Edit: I was also going to post about this lady but could not remember the particulars but I found the thread where she talks about her recover here: https://forums.phoenixrising.me/threads/full-recovery-is-it-possible.52201/
It's @taniaaust1.

Edit #2: I found the other member too: https://forums.phoenixrising.me/threads/aggressive-rest-therapy-my-experience.46904/ (but he's not talking about restaurants so maybe I imagined that part ) Oh, well. Sorry.

 

[GlassCannonLife]

This is a good poll. I'm glad you posted it.

I don't remember who it was...I've tried to find the post again a couple times over the years but one member said he did 15 minutes of activity and then 45 minutes of absolutely nothing for every hour he was awake through the day.

During the 45 minutes, I think he just lay still in a dark, quiet room and did absolutely nothing. He said he was bored silly during that time but kept it up.

If I remember correctly, he did that for between 3-6 months straight and improved enough to be able to go out and eat in a restaurant with friends.

I wish I could remember who that was to be able to give you better specifics and to make sure I'm telling it correctly.

Edit: I was also going to post about this lady but could not remember the particulars but I found the thread where she talks about her recover here: https://forums.phoenixrising.me/threads/full-recovery-is-it-possible.52201/
It's @taniaaust1.

Edit #2: I found the other member too: https://forums.phoenixrising.me/threads/aggressive-rest-therapy-my-experience.46904/ (but he's not talking about restaurants so maybe I imagined that part ) Oh, well. Sorry.

Thanks! Yeah I feel like there's something to strict pacing - it seems to really help some people. It leaves me wondering if I just need to do something like what you describe, essentially suck it up and vegetate as much as needed to save enough spare energy for healing. It's so hard though with my personality and with a 2 year old..

I'll check those links out though, thanks for digging them up!

 

[GlassCannonLife]

I read through the threads @Judee , it sounds very promising. Considering that, it's strange that it seems to have disappeared off regular chat on the forums.

Maybe I should rename this thread to include aggressive rest therapy (ART) in the title.? Did you ever try doing this? I saw you liked a few posts in the thread from 2017.

 

[Jyoti]

In all of the last ten years, the best and healthiest time I have had were the months I was restricted to bed by a severely broken leg. Despite the pain of that, after a few weeks, I had more energy, no PEM, slept better--the whole nine yards. I have a hard time remembering how beneficial that ART was for me, and an even harder time doing it voluntarily. But there is no doubt that dramatic restriction of my energy expenditure improved my overall health by at least 30%. (And then my bones healed and I started exceeding my envelope again..... raising @BrightCandle 's question about the long-term value of it.)

 

[BrightCandle]

The problem is when you can't move out of bed for 6 months things start to break. Your back really starts to hurt and have severe problems, your legs get itchy to move, shoulder and neck problems and a lot of secondary pain from just not lifting your body up and moving about, your guts need gravity to function and really degrade if you don't give them that. You need to walk around every day or it really does a number on your body. There is a bare minimum of activity that is sufficient to avoid serious muscle related pain and you can only stay below that threshold of activity for a limited period of time before it catches up with you an induces a lot of pain.

 

[GlassCannonLife]

The problem is when you can't move out of bed for 6 months things start to break. Your back really starts to hurt and have severe problems, your legs get itchy to move, shoulder and neck problems and a lot of secondary pain from just not lifting your body up and moving about, your guts need gravity to function and really degrade if you don't give them that. You need to walk around every day or it really does a number on your body. There is a bare minimum of activity that is sufficient to avoid serious muscle related pain and you can only stay below that threshold of activity for a limited period of time before it catches up with you an induces a lot of pain.

Yeah sure, in my case I am lying down most of every day anyway. I move around the house but when I am lying down, I am on my phone the entire time, reading or watching a show or movie or YouTube etc.

I rarely do a 20 min "no screen time" rest some mornings and I do find that much more refreshing, although it is harder to make myself do it.

I think the idea would be that instead of being on a phone etc most of the day, you instead force yourself to rest without a screen, in a quiet and not too bright room. You could realistically do all of my daily walking around within the active parts, and then rest more completely during the resting parts.

Perhaps for you it would be more difficult, if you are already more active. But as discussed in those threads, you may also need less rest time if you are less severe.

 

[Learner1]

I find that replenishing branched chain amino acids, and antioxidants like ALA, C, E, NAC and glutathione can greatly help.

 

[Martin aka paused||M.E.]

Strict pacing... Depends on how severe you are. If you're very severe you can't do anything so how to pace? It doesn't help then. Did it 2018-2019 every day... Meditation while awake the whole day... No improvement.
Now when I'm severe it would mean to do nothing. No YouTube no forums etc. When I do this it only does one thing: I don't crash. But I don't improve. Mind/body is BS if you have real ME (not a washy CFS diagnosis).

 

[GlassCannonLife]

Strict pacing... Depends on how severe you are. If you're very severe you can't do anything so how to pace? It doesn't help then. Did it 2018-2019 every day... Meditation while awake the whole day... No improvement.
Now when I'm severe it would mean to do nothing. No YouTube no forums etc. When I do this it only does one thing: I don't crash. But I don't improve. Mind/body is BS if you have real ME (not a washy CFS diagnosis).

Yeah I think you have to be well enough that you have a spare "buffer" of energy that can potentially repair things. It has nothing to do with mind/body connection.

I don't know who it is likely to work for, but there are a number of people who have reported benefits in the threads Judee linked. There might only be a subset of people who respond, but these guys did it for literal months before they noticed any benefit.

Meditation is just helpful for mental health and also saves more energy as you don't have as much of a constant stream of thoughts also sapping energy and driving you crazy.