Pacing - different meanings of the term pacing in ME/CFS and other conditions, and the problems this causes.

Regarding pacing for pain, FM throws that concept out hard on its tush.

One or two arm movements can evoke a 10-day bout of increased local and body-wide pain (from a 5/10 baseline level of pain to an intolerable 7-8/10).

FM pain generation has its particular rules base which take self-discipline to stick to--each and every task using muscles in the FM-affected regions must be thoroughly consequenced, thought through and the task often dropped, if it's not an emergency.

I don't like the word "pace" in any form, because it has the connotation of marking steps in time, as though there is a miraculous progression upward and toward improvement, as though a religious effort. That there is something fundamentally wrong with you the way you just are with your illness.

FM changes how the brain responds to stress (think national and world politics, family stress, sensory, identity and self-esteem, social and role stress, life events).

Pacing: this changed brain and painful state is all reduced to the mechanics of do more A and you will feel better (B). FM doesn't conform to this concept.

Their logic of "pacing" comes from lived human experience---theirs. The human mind's propensity to quickly stereotype everything into manageable categories doesn't help us.
 
In Norwegian we use the word «aktivitetsavpassing» for pacing, which consists of two words:
Aktivitet = activity
Avpasse = adapt, adjust, fit

«Avpasse» isn’t really a common word, but it’s sometimes used in the traffic when you have to «avpasse»/adjust your speed according to the circumstances.

I think that any words that mean anything related to adjustments will be susceptible to the gradual increase interpretation, but at least it might not already have another related, but inappropriate already established meaning.
 
I don't like the term energy management, rather had used "energy rationing"... as it communicated a finite supply of ability to exert, and avoids the whole idea that it can be expanded by me beyond limits this illness imposes. I can see the issue with "energy" though from what you say.

How about exertion rationing (I love the rationing, I was looking for that word)?
 
How about exertion rationing (I love the rationing, I was looking for that word)?
It's a tricky one I think because 'exertion' might often be interpreted as something "extra" on top of what it is usual to do, as well as carrying more connotations of physical activity. Hard to think of a generic enough word that doesn't have some issue though. Maybe "activity rationing" may get closer to it.
 
I've taken to using capacity instead of energy. It's far from ideal, but it feels like something of an improvement.

The vagueness of it could be argued to be a hindrance, but as we're talking about something that's extremely poorly defined in the first place, I'm not so worried about it.
 
Rationing would also give the pacing up proponents some semantic issues.

Proposing that your rations will increase if you use more of them makes no logical sense and it contradicts people’s normal understanding of the word.

It also implies that the limit is imposed by something beyond the control of person that has to ration.
 
Is there a way to express the idea of limiting exposure to triggers, in particular activity, sensory stimuli, etc?
This is a good point. There's also a slightly different nuance to this, aspect separate from rationing... what about "sensory insulation" for the sensory side. That's something I definitely have to do sometimes. Or "activity adaptations" in relation to limiting exposure where you still might have some exposure to activity? I think rationing still works for overall sense of limitations.
 
Think there’s a discussion somewhere here from a year or two or three….ago where we were exploring the possibility that pacing is best done away with as related to this illness, and we concluded, on the whole, that the answer was yes?

Perhaps I am projecting tho because I want rid.

Aside from the prior uses related to other medical conditions it reminds me mostly of how you’d just keep on keeping on during and arduous exploration of a remote location, where you certainly couldn’t rest for long or you’d die of exposure, so instead you take mini steps and have mini breaks, and then triumph. Get to return to a life that doesn’t require such careful pacing. Or die.

Or pacing seems like living our entire lives in a circular never ending sporting event.

Maybe a few discussions have come up. Maybe the main one was around the quote in the opening post? I am too tired to look or read back. So I appreciate the topic coming back around, thanks Trish.
 
Last edited:
Back
Top Bottom