Pacing success?? What's yours...

[Emmarose47]

Hi, I'm looking for people's experiences on pacing. I've tried many things and what ever I do I end up in a place of over do. I'm starting to think its just not possible to pace 100% and not experience flare ups.
I do well a lot of the time it just seems enivitable that I'll over step the mark and bam rinse repeat.
What's helped u? What kinda success rate do u experience? Is it an impossible task to master fully?

 

[L'engle]

I haven't been able to. Most activities don't lend themselves to being cut short suddenly and picked up another day halfway through.

Maybe some people can rigidly do the exact amount of activity each day and not have worsened symptoms. Some people have reported setting timers on everything they do based on HR monitors. I don't know if they kept it up. It sounds like a type of prison to me.

Would be great if someone can accomplish this!

 

[hapl808]

Maybe some people can rigidly do the exact amount of activity each day and not have worsened symptoms. Some people have reported setting timers on everything they do based on HR monitors. I don't know if they kept it up. It sounds like a type of prison to me.

I count steps, HR, minutes on the phone, etc. Still crash about 50% of the time.

 

[Atlas]

Some people have reported setting timers on everything they do based on HR monitors

An hr monitor and other stats helped me learn my limits, but yeah long term I find it to be slightly counterproductive, because spending time on charting the info, hrv etc would sap away energy I could have used elsewhere and also, once I learnt to listen a bit more to signals from my body that became more effective than the hard metrics...

@Emmarose47 but yea I gave up on completely avoiding PEM entirely, i just try to be attentive now to signs that my body has "had enough" so I can avoid more serious crashes. And still not super great at that either.

I read somewhere in one of those ME manuals that the point of pacing is not to eliminate pem entirely but just strike a balance that can make level of QOL more consistent and bearable.


....

I reckon whether setting timers or not based on HR etc is helpful probably also depends on one's personality type, some people who are highly planning/structure oriented about their day might thrive on doing that, but for me it would get tiresome.

 

[Emmarose47]

Thank u so helpful to hear others so far..
Will write more later

 

[Blazer95]

Staying below 100 if possible is absolute best. I rarely crash on below 100, and if its because of mental oder psychological stress. sometimes I get high HR from standing allone, then i try to keep it below 110-120. i have hr monitor on my wrist. kinda works for me...

today i have a absolute blast of an day with a 84 HR while walking and a 62 RHR when seated. wish it could stay like this haha....

 

[L'engle]

I could see it working for someone who has very compromised physical energy but fairly unlimited mental energy. Some people do seem to have that pattern where their cognitive abilities are not affected much. For me it would take too much away from my limited mental energy to do that.

 

[hapl808]

today i have a absolute blast of an day with a 84 HR while walking and a 62 RHR when seated. wish it could stay like this haha....

Haha. My baseline HR when seated right now is 95, so only way I can keep it below 100 is staying completely bedbound.

 

[Blazer95]

Haha. My baseline HR when seated right now is 95, so only way I can keep it below 100 is staying completely bedbound.

wow that is high. my rhr was like that before therapy. i always had a 90+ hr with a really massivly pounding heart for no apparant reason and short of breath all the time.

- low dose nebivolol (betablocker) - 1.25mg at night
- citalopram (normally a SSRI, but has positive effect on my OI) 10-20mg
- curcumin high dose

seem to the trick for me if i get of citalopram my standing hr is easily 100 again without even doing anything.

 

[hapl808]

- low dose nebivolol (betablocker) - 1.25mg at night
- citalopram (normally a SSRI, but has positive effect on my OI) 10-20mg
- curcumin high dose

seem to the trick for me if i get of citalopram my standing hr is easily 100 again without even doing anything.

Interesting. I've tried curcumin - a few different forms. Didn't do much, but not sure how high a dose I took.

What effect did each of those have? Do you mean that that combo brought down your HR? I've tried only propranolol - was thinking to try metoprolol. Not familiar with nebivolol - is there a reason you took that one?

And interesting on citalopram. How did that affect your HR? I only know it as an SSRI, so it's not something I've looked into before.

 

[Blazer95]

Interesting. I've tried curcumin - a few different forms. Didn't do much, but not sure how high a dose I took.

unsure i take like these capsules with piperine 2x daily and it seems to have a mild positive effect in terms of pain etc.

What effect did each of those have? Do you mean that that combo brought down your HR? I've tried only propranolol - was thinking to try metoprolol. Not familiar with nebivolol - is there a reason you took that one?

Yes. Nebivolol is said to be the mercedes of the betablockers.

It is very cardio-selective, meaning it almost only docks to the beta-receptors of the heart making it lower in side effects then the others.

And the coolest thing is, for some reason nebivolol seems to positively interfere the L-Arginine/NO metabolism allowing a better blood circulation ( that may have a effect aswell )

I take 1.25mg because 2.5 starts to effect my blood pressure and i dont want that. but 1.25 seems to just decrease my heart rate a bit without dipping the bp.

And interesting on citalopram. How did that affect your HR? I only know it as an SSRI, so it's not something I've looked into before.

Yes, Citalopram seems to effect my HR, mood, energy levels and pain (as long as i pace!!)

there is even a study that Citalopram is immunomodulatory to some extend downregulation overexpression of IL-2 and IL-4 in T-cells and promoting function of dedritic cells:

https://www.sciencedirect.com/science/article/abs/pii/S0165572813001653
(this indicates that it might not be a "symptomatic" treatment but actually do something about underlying causes making it even cooler)

Further it docks to 5-HT receptors (to a very low extent and lower then other SSRI) but these do actually have a blood pressure regulating effect, so this might be a pathway aswell.



Edit: I just thought i share my current stack:

Morning:
- Curcuma 1 cap
- Omega 3 Oils from Algae (vegan)
- Multivitamin and Mineral Complex (kinda standard)
- UDCA/TUDCA 1x cap
- Citalopram 10-20mg
- Nattokinase 1x cap

Evening:
- Nattokinase 1x cap
- 1/4 of a Nebivolol (1.25mg)
- Hawthorne Berries 1-2x cap
- Pantoprazole (i have bad stomach problems aswell, cant get off it)
- UDCA/TUDCA 1x cap


currently looking into the immunomodulatory effects of the antibiotic minocycline and Low Dose Apiprazolam (did not try them yet)

 

[Emmarose47]

My HR is always around the 60s/70s I don't do anything to take it higher. This is me resting, walking around my flat, doing things etc.
So my flares arnt related to higher heart rate..
Unless someone knows something I don't?

 

[Emeline]

Hi, I'm looking for people's experiences on pacing. I've tried many things and what ever I do I end up in a place of over do. I'm starting to think its just not possible to pace 100% and not experience flare ups.
I do well a lot of the time it just seems enivitable that I'll over step the mark and bam rinse repeat.
What's helped u? What kinda success rate do u experience? Is it an impossible task to master fully?

I was able to accidentally completely pace during the 2020/2021 lockdowns, as I as taking a year out of university. I had developed CFS, but hadn’t been diagnosed yet, so I don’t have great data, but from my own recollection, it had a profoundly beneficial impact.

I think I crashed no more than 6 times between April 2020 and April 2021, and I moved from what I now estimate was moderate to mild CFS. I returned to university in September 2021 and had two good months of normal activity before I started to relapse.

I believe the longer you go without a crash, the more you can push without crashing. Unfortunately I was completely overextending myself without pause because I didn’t get diagnosed until June 2022, but since then I’ve been able to avoid crash more than once every few months, sometimes longer, and I really do think it makes a profound difference. Pacing is probably the hardest thing I’ve done in my life, but I swear by it as treatment. Of course, I’m moderate and I’m limited to 3-5hrs of activity a day, for severe patients it may be entirely impossible.

Dr. Perrin, a CFS specialist, recommends his patients limit themselves to 50% of what they can do without triggering a crash. He has no studies to back this up, but anecdotally his patients do seem to recover, from this and a number of other treatments (see: the Perrin Technique).