Pacing - Can You Improve Without It? An ME/CFS and FM Poll

[IrisRV]

What HR zone did you have to stay in?

Bottom line up front:
The best way to find your safe max HR is to do exercise testing. If that's not possible, the rough calculation (220-age)*0.6 is a reasonable place to start.

My specialists have had me do the one-day CPET or AT testing (limited CPET just to AT) twice in the past 10 years or so. My results were nearly identical even though my symptoms and functionality were different, so it looks like it's a physical measure of my body's fixed level of energy production.

I was told to stay below my anaerobic threshold period. If I reached my AT, I was supposed to stop and sit immediately. Most patients find that for normal living, they need to stay about 20 bpm below the AT measured on the one-day CPET. Approaching the AT is reserved for very short-term, unavoidable exertion such as climbing stairs or pulling small children out of the path of speeding vehicles. If you're well enough to do some strength exercise, you may be okay exercising near your AT, but not over.

There is thinking that staying above your AT for more than a minute or two is what causes PEM -- not in every single case, but in physical exertion PEM. That definitely fits my experience.

The best way to determine what your own AT is is probably to do the 2-day CPET and use your AT for the second day. Next would be the cycling (not treadmill) AT test, which is a CPET that takes you right up to your AT and then stops instead of pushing to max. It is very much less likely to cause a PEM episode. It takes 5-8 minutes for many PWME.

If you can't measure your AT, you have to guess. One very rough approximation is (220-age)*0.6. You may still have to work down from there until you don't have PEM for an extended period.

Interesting bit of info -- my cardiologist ordered a dobutamine stress test for me. They had to abort it when my BP started going dangerously high (220/110). This was only halfway to where then were trying to get. What is interesting is that my otherwise normal BP started going nuts right at the (220-age)*0.6 HR level. Significant or coincidence? Who knows?

 

[Robert Christ]

If pacing is pushing yourself a little harder every day with the expectation that you will be able to ratchet up your activity level over time I haven't done that. Because doing such would lead to a crash and from what i understand your not supposed to push yourself too hard.

It's all very confusing to me and slightly insulting. Because nobody has to tell me to try to push myself to do things, I've been doing that since I came ill almost 20 years ago now. So the concept isn't really novel to me. I always did this even before I got sick. When I got lax I would feel guilty and try to make up for that by pushing myself a little harder.

There are so many different nuances to this issue also. There are times I am sick without having pushed myself so I don't even try which would obviously be disastrous. There are other times I feel good and do push myself because I am so hopelessly backlogged I feel I have no choice but to exploit my ability to function to it's fullest. Which often results in a crash.

Than there are times like the one when I had to drive cross country and visited some people and averaged 12 hour days, for 3 days plus the socializing, the last day being more like 16 hours which lead to such a serious crash I thought I had been poisoned and spent a week recouping. (I really do think I was poisoned I never fully recouped from this.)

Than there are times I come off a bad series of days, feel good and just want to take it easy cause I feel I can't always have my nose to the grindstone. So I read and post on the internet or watch tv and don't do much else but basic necessities as far as work.

There have been times or long periods when I have never had the luxury of being able to work. So I did the bare necessities and no more. I never exercise cause I have too much work to do and can't afford to waste my energy on this.

Than you have environmental factors. Mold and food sensitivities. When I was at my worst with them I was almost completely bed bound. Again barest of bare necessities. I heard one dr say that some patient's can't describe their symptoms too well at all because of the brain fog. I can relate to this. In the last 20 years the way my brain recorded the events has been severely compromised.

So I try to write down the most prominent symptoms. I do not put much stock into the speculation that there is a large psychological aspect to this illness. I would argue it's no different than any other traumatic illness like ms or Parkinson's. But none what so ever of the woo aspect where we are even remotely doing this to ourselves.

I will concede that I might be somehow subconsciously repressing the memory of how bad these symptoms are and their characteristics. So in my mind it's not just brain fog that predisposes us "me" to this "forgetting what our symptoms are" It's on some subconscious level our protecting our selfs from the incredible amount of misery it has caused us.

I should also probably mention when I use the word "work" I'm actually talking about "chores" at home. I haven't ever in the last 20 years been close to the point I could actually go back to work. Not even part time.

Although interestingly I have had plenty of dreams about doing it. At my old place of work, building boats. Recurring dream. Always with the attitude I don't care if I'm sick I want to do this and nothing is going to stop me! Kind of weird and cool at the same time.

Ironically the last place that someone with this condition would want to work is some place where they breath and absorb toxic chemicals all day long. No chance for me doing this ever again!

The best thing I have done to help improve my condition is to closely regiment the times I eat and drink coffee and go to bed so that I develop a rythym which results in my getting an uninturupted 9 to 10 hours sleep every night. I've posted that in more detail on Phoenix rising under the pseudonym antares4141 probably a couple of years ago for anyone interested in looking it up.

 

[IrisRV]

If pacing is pushing yourself a little harder every day with the expectation that you will be able to ratchet up your activity level over time I haven't done that.

It's not. At all. What you are describing is graded exercise therapy (GET) which is an entirely different beast. IMO, GET is both crap and dangerous to PWME.

PS: Paragraphs please. Many of us can't read large blocks of text.

 

[Who Me?]

@Robert Christ omg like @IrisRV said please go back and edit your post and add many paragraphs. We need white space.

You're English teacher is probably rolling over in her grave. Lol

 

[Robert Christ]

It's not. At all. What you are describing is graded exercise therapy (GET) which is an entirely different beast. IMO, GET is both crap and dangerous to PWME.

PS: Paragraphs please. Many of us can't read large blocks of text.

Thanks for correcting me on pacing & get not being the same thing. Sorry to everyone about not using paragraphs. Hope the edits make it a little more palatable.

 

[Who Me?]

Thanks for correcting me on pacing & get not being the same thing. Sorry to everyone about not using paragraphs. Hope the edits make it a little more palatable.

Thanks for the paragraphs. I'm on my phone and could use more. There's still 2 really huge chunks. They don't have to make sense where you put them. It's more about needing white space. Thanks

 

[Robert Christ]

Thanks for correcting me on pacing & get not being the same thing. Sorry to everyone about not using paragraphs. Hope the edits make it a little more palatable.

Sorry, I broke it up even a little more. I'm still using the old style basic cell phone so not very much able to appreciate what it's like using a smart phone.
Hope it's better now!

RC

 

[IrisRV]

Sorry, I broke it up even a little more. I'm still using the old style basic cell phone so not very much able to appreciate what it's like using a smart phone.
Hope it's better now!

RC

That's a good amount of whitespace. It's surprising the things that give us trouble.

I'm back to working part-time at a non-demanding job with understanding employers. That's a big improvement over bedbound. Pacing played a part in that, but not the biggest part. NEVER did I try to do anything as stupid as push a little more each day or week. Pacing was about NOT doing more than my body could handle.

 

[Robert Christ]

That's a good amount of whitespace. It's surprising the things that give us trouble.

I'm back to working part-time at a non-demanding job with understanding employers. .

I remember there was a time I had trouble even making a dr's appointment. Or paying my bills. I seem to be a little better than that now but work would put me over the edge. Maybe if it was do or die. Fortunately I'm not in that position.

It troubles me to knowing many people are. And that's why it's so important that we at the very least advance science to the point where it can be diagnosed. So that these people can at least get the help afforded to them that currently they have to fight tooth and nail for. And that authorities are officially put on notice "yes this condition is real". Than there will be insurmountable pressure to fund research that leads to treatments & prevention.

 

[Who Me?]

@Robert Christ thanks!

 

[IrisRV]

I wouldn't be working if I didn't have to. I suspect it's not helping my condition in the long run, but at least it's not PEMing me in the short-term or causing a clear decline. Unfortunately I have to work right now. Hopefully that will change in the next couple of years.

 

[Robert Christ]

I wouldn't be working if I didn't have to. I suspect it's not helping my condition in the long run, but at least it's not PEMing me in the short-term or causing a clear decline. Unfortunately I have to work right now. Hopefully that will change in the next couple of years.

I hope it does change also, for your sake and that of everyone in your position. This condition is difficult enough without that added stress.

 

[Judi]

My symptoms have become much, much worse over time and that has forced me to pace. It doesn't seem to help much tho and I'm wondering if I've gone too far in pushing myself that pacing will have no benefit until I can recover some.

 

[Who Me?]

@Judi i think for me I have to pace not so much to get better but to avoid having a major crash from overdoing it.

And overdoing can be as simple as throwing some laundry in the machine.

 

[Judi]

@Judi i think for me I have to pace not so much to get better but to avoid having a major crash from overdoing it.

And overdoing can be as simple as throwing some laundry in the machine.

I hear ya! Then there's pacing your brain! I love to paint (art) and creating art involves spontaneity, thinking, decision making

My sisters and daughters gathered at my home yesterday (a rarity). We only talked I didn't even make lunch! I'm exhausted today and will probably be more so tomorrow

However some things are worth doing even if you have to pay but I'm getting very picky about what I'm willing to do

 

[Who Me?]

Talking does me in. worse than physical exertion. I have to make a phone call later and I'm dreading it.