How to find your baseline?

[DaisyBloom]

(Not sure if I posted this in the right section, so my apologies if so)
I am new to this condition and to this forum and have a couple of questions.
1. I’m wondering what is the best or most “scientific” way to find out what my baseline is for daily activity, whether it’s social, mental, physical exertion, etc.
I’m trying to discover my threshold / “energy budget” so I don’t go beyond that. PEM is absolutely horrible!
How did you all figure out just what activities you were able to do without feeling horrible the next day?
I realize this is personal for each of us but I just thought I would get some ideas about how to go about it.
My doctor suggested keeping a detailed log of all my activities and what I do each day and then see how I feel the next day.
Any thoughts?
2. My second question is this : is there any scientific research (I assume there is) that proves that exerting yourself beyond your “energy envelope“ may actually end up harming you and making you even worse, perhaps even permanently ?
Thank you!
DaisyBloom

 

[Trish]

Hi @DaisyBloom. Have you come across our fact sheets yet?
The are listed here
Science for ME Fact Sheets
We don't have one on pacing yet, but the one on PEM might help. We discuss the concept of energy envelope and other terms used and point out that it's not a fixed or predictable thing, and we each learn by experience.

Lots of us found activity diary keeping tedious, draining in itself and unhelpful. Some seem to find them helpful for a few days, but not longer. The idea some therapists push is looking for single activity that might have triggered PEM a day or two later, but the effect of all activity, physical, mental, emotional, social tends to add together so it may be the effect of the shower and the walk to the shop without having rest between them, and the phone conversation one day plus the trip to the doctor the next day that becomes too much, or it may be a single thing like going to a social event with noise and standing.

I think diary keeping in the sort of detail therapists encourage with colours for how strenous each exertion is seems pointless when it's so complex. Also our threshold varies from day to day unpredictably and we can often only work out what triggered PEM once it happens and we look back at the accumulation of activities over the last few days.

My preference from the start has been to just try to reduce my overall activity, take rest breaks when I can, and look back at what might have triggered it after the event, and learn from it. I also have muscle pain and weakness that gets worse the more I continue an activity, so that's a useful signal I need to stop and take a break.

I also found wearing a step monitor (fitbit) useful as part of looking back over my overall physical activity level for each day. I found a definite pattern a few years ago that if my step count went over 1500 in a day, I tended to crash, so I tried to stay under that figure when possible.

Something to be wary of with UK clinics. A lot of them recommend a structure of pacing that isn't appropriate for ME/CFS, sometimes called pacing-up. Their idea is you use a diary to help you establish a baseline (usually not realistic) and then once that is stabilised, add new activity each week. Their theory is that you can gradually desensitise your body to increasing activity. That is nonsense, and has led some people into long lasting and severe crashes.

 

[Jonathan Edwards]

I’m wondering what is the best or most “scientific” way to find out what my baseline is for daily activity, whether it’s social, mental, physical exertion, etc.
I’m trying to discover my threshold / “energy budget” so I don’t go beyond that.

I am afraid to say that there is no science behind, just people's experience. The idea of an energy budget is just an analogy for how it feels. Physios often seem to think there is some science to back it up but not really.

That shouldn't worry you, though. There is general agreement amongst thousands of people with ME/CFS that you ned to find your own best way of coping with PEM by judging how much you can do.

My second question is this : is there any scientific research (I assume there is) that proves that exerting yourself beyond your “energy envelope“ may actually end up harming you

Again, this is just a matter of the experience of people with ME/CFS. There is no science behind it but it is hard to deny that it is real when so many intelligent people give the same story. Exactly what the 'harm' consists of is hard to pin down but there is little doubt that people find they are more disabled and less able to do normal daily activities following trying to push through.

Like Trish, I doubt that making lists of what you have done helps much. It may add to the exertion.

 

[Kitty]

How did you all figure out just what activities you were able to do without feeling horrible the next day?

The perennial problem! All I can say is that it took me a long time to work out what I could do over a day, a week, and a month.

Realistically I have to zoom out and look at how to balance a week, a fortnight or a month rather than a single day. I wouldn't get to do anything otherwise. I'm moderately affected and can usually get out a couple of times a week, provided I can rest before and afterwards; if I needed to go out three times in one week, I'd try and keep it down to just once the following week.

My second question is this : is there any scientific research (I assume there is) that proves that exerting yourself beyond your “energy envelope“ may actually end up harming you and making you even worse, perhaps even permanently ?

No.

There's no such thing as the 'energy envelope'—I don't know who thought it up originally, but it's a really unhelpful term. It suggests that we can know what our capacity is, and often we can't.

ME/CFS fluctuates from day to day, and for mild and moderately ill people there can be quite a lot of variation. This means one day's 'energy envelope' isn't the same as another day's. It's also contingent on what you've done recently, whether you've got a virus, where you are in the menstrual cycle, etc.

There's no trial evidence to show that over-exertion causes long term deterioration, but a proportion of people with ME/CFS report progressing from mildly affected to severe after trying to keep up exercise or continue working. Even though we can't show cause and effect, it's probably a good idea to avoid PEM (especially severe episodes) as much as possible.

 

[hotblack]

I tried lots of ways to more objectively do so, with various attempts measuring or tracking things. But an element of empiricism seems to work best. Time, experience and listening and learning from what your senses tell you. But it’s an ongoing process and there’s no right answer. What each of us can do will change. We will make mistakes. And life happens and things mess up whatever balance you may have thought you found. So I try to not hold on too tightly or rigidly.