Questions about pacing and GET

[Florida Guy]

Correct me if/when I am wrong but my understanding is that pacing is what it sounds like, you know how much you can do and don't try to go beyond it. If you go beyond your limits you will likely have pem the next day depending on how far you went beyond. GET seems to be taking exercise daily and trying to work through the next day pem. They then try to gradually increase their effort levels a little at a time.

Logically, GET should work since exercise helps most conditions. But logic is what led doctors to recommend that me/cfs patients go out and get vigorous exercise and work through the aftermath. They did not realize this was a totally different condition that responds negatively to increased effort. I read that 60% got worse and only 20% got better. Those who got better might have improved anyway and perhaps they were not pushing themselves as hard as the others?

While exercise does not help, total inactivity is very bad for our health. Wouldn't it be better to recommend people get as much exercise as they can comfortably do and not go beyond that? I find that I can go for a very short walk and no problems but if I go much farther then next day pain in the legs etc. But I'm thinking I should at least get as much exercise as I am comfortable with.

Does being as active as you can without next day problems work for you? Or do you feel better sitting or being in bed most of the day?

 

[andyguitar]

Those who got better might have improved anyway and perhaps they were not pushing themselves as hard as the others?

Another possibility is that they did'nt have me/cfs.

 

[hapl808]

Does being as active as you can without next day problems work for you? Or do you feel better sitting or being in bed most of the day?

In general, being as active as you can without any problems is always a good idea. However, if you don't have any next day (or two) problems, then you're likely working well within your energy reserves. That's pretty rare, because it's natural for most of us to push ourselves to do more when we feel better - and it's hard to anticipate how you will feel for the 48 hours after activity. I used to crash all the time, but I wasn't usually clear on what caused the crash. I often thought it was food related because my crashes often had GI symptoms, but in retrospect I think the social activity of an evening out was more likely the cause than the food itself.

People like Myhill promote exercise, but only if you have absolutely no symptoms at rest. That's rare for many of us, which makes it harder.

 

[Florida Guy]

Yes, I think some exercise is absolutely needed although when we think of exercise we think about sweating and working hard. That does not seem to help but mild exercise that can be tolerated should keep you healthier than doing nothing at all when you can do more. I'm thinking of slow walks, maybe lifting a barbell, just moving around and doing something during the day, that gives a little exercise too. Lying in bed all day should be avoided if possible. Or a slow exercise like tai chi

 

[Jyoti]

I think that we all have to find and gauge our own tolerance. As you suggest, @Florida Guy, for some people that may be moving around a bit, or for many of us taking a shower is the limit. But everyone is different and we ourselves are different at different times. Which makes it pretty challenging to avoid PEM.

Tai Chi is fantastic for some people. I myself leant towards qigong, but found it was devastating, likely because of the movements that require arms above head. Not sure....but I kept trying, adapting, sitting, etc. And eventually had to acknowledge that no matter how wholesome it seemed, it was going to leave me sick and in bed the next day.

Just using that as an example of something that SHOULD have been lovely and IS lovely for many people. But I had to learn it was a no-go for me.

And this leads me to mention that adhering to what you know about your own limits is extremely important when dealing with doctors. Unless they are the rare ME-literate physician, they are not going to be able to help themselves from urging you to exercise more. It is sometimes hard to ignore the advice of a kind and thoughtful doctor, but I think it is imperative to trust your own experience.

 

[wabi-sabi]

Wouldn't it be better to recommend people get as much exercise as they can comfortably do and not go beyond that?

Yep. This is a good description of pacing. Do as much as you can without making yourself sicker.

The problem is that finding that point is hard and it's always less than you want to be doing. At some point when you get severe enough even things like brushing your teeth and using the toilet are over your energy budget.

We have to balance the harms of inactivity, which are well known, with the harms of PEM, which aren't so well known. For example, if I were to do enough exercise to prevent osteoporosis, I would cause brain damage. Which harm is worse?

I think it was a talk by David Putrino, who said all disabled people are out of shape to some extent. That's what being disabled means. Most of us are not going to the para olympics. The question is, how do we reduce the harms of inactivity within the limits that disease and disability place on us?

 

[hapl808]

mild exercise that can be tolerated should keep you healthier than doing nothing at all when you can do more. I'm thinking of slow walks, maybe lifting a barbell, just moving around and doing something during the day, that gives a little exercise too. Lying in bed all day should be avoided if possible.

Probably good advice, but people who are mild have difficulty understanding that some people might crash from a slow walk or lifting a barbell. I highly doubt many people are 'lying in bed all day' unless they can't get out of bed.

I can't walk without assistance, let alone lift a barbell. Yet I constantly work on the computer too much or crutch to the kitchen too many times and end up crashing.

In general, people tend to overdo it. I have seen very few people reporting that they consistently do less than they are able - it's almost always the reverse.

When I was mild, I overdid it every day. Not doing intense exercise, but walking too many steps. Taking on too many projects. Standing at work for too many hours. And so forth.

Other than the theory of aggressive rest therapy (which some report helpful), almost everyone naturally does stuff. Doing 'nothing at all' is intolerably boring. In prison, that would be considered inhumane punishment.

 

[wabi-sabi]

crutch to the kitchen too many times and end up crashing.

Wouldn't a wheelchair be better? I often use one to prevent me overdoing the steps and it's less of an orthostatic strain to sit than to stand.

 

[hapl808]

Wouldn't a wheelchair be better? I often use one to prevent me overdoing the steps and it's less of an orthostatic strain to sit than to stand.

A wheelchair would require some reconfiguration of my space, and there's a door to open to the bedroom. Since it's not a long distance, I feel like pushing the wheelchair would require more effort than crutching - but I have thought about it. An electric wheelchair might be easier, but that also gets complicated (and expensive) and would require significant reconfiguration of my space and kitchen.

But admittedly I'm erring on the side of doing a bit more than I can usually handle. I worry that if I use a wheelchair constantly, I might end up even more limited over time. It's a bit of a balancing act.

 

[hapl808]

it's less of an orthostatic strain to sit than to stand.

I have stools and chairs in the kitchen and hallway and such, so I'm never standing for long - it's just getting 10 or 20 feet until I can sit down again usually.

 

[wabi-sabi]

I worry that if I use a wheelchair constantly, I might end up even more limited over time.

I haven't found this to be the case. Do you mean you're afraid of muscles getting even weaker?

I walk short distances, such as down the hall to the bathroom, and I roll long distances, like all the way to the kitchen. The kitchen is too small for any kind of chair, so I stand when I get there. On my good days I walk to the kitchen. Of course, I always want to walk, unless I have made myself so sick that I have to roll. It is quite the balancing act.

 

[keepswimming]

I think the best advice I was ever given by a medical professional was from the GP that first diagnosed me.

He said, "do what you can, but not too much."

I think that sums it up really - easier said than done though!

 

[Florida Guy]

The not too much part is tricky

 

[keepswimming]

The not too much part is tricky

Very much so. I think the principle is good but very difficult in practice.

 

[hapl808]

Very much so. I think the principle is good but very difficult in practice.

Exactly. Took me literally decades to realize the sometimes *two day* delay between doing too much and symptoms.

It never really occurred to me that GI symptoms on Thursday might be related to too much socializing on Tuesday. Instead, I obsessively tweaked diet, kept journals of foods, etc. When I had a sore throat or flu-like symptoms, I thought I was fighting off a cold.

Not once did I think that pushing myself through a cognitively demanding task could cause that. I was always just frustrated and annoyed at what I viewed as a lack of adequate discipline, but I think I was subconsciously avoiding things that made me feel worse - I just didn't really understand why or how.

 

[keepswimming]

Exactly. Took me literally decades to realize the sometimes *two day* delay between doing too much and symptoms.

It never really occurred to me that GI symptoms on Thursday might be related to too much socializing on Tuesday. Instead, I obsessively tweaked diet, kept journals of foods, etc. When I had a sore throat or flu-like symptoms, I thought I was fighting off a cold.

Not once did I think that pushing myself through a cognitively demanding task could cause that. I was always just frustrated and annoyed at what I viewed as a lack of adequate discipline, but I think I was subconsciously avoiding things that made me feel worse - I just didn't really understand why or how.

Yes the delay makes it so confusing, it's usually three days for me. It took me a long time to realise that and learn my limits, it really is trial and error. I understand what you mean about subconsciously avoiding things too!

 

[Florida Guy]

I'm still learning about that stuff, I just unofficially diagnosed myself with cfs about 2 weeks ago. There isn't much doubt since most symptoms match up. The only major symptoms I don't seem to have is getting dizzy from standing up and I dont get migraines, thank goodness. But everything else, pem from too much walking or working, pain in muscles that lasts for days or weeks, blood pressure dropped dramatically from usual 125 over 85 or so to now at rest it might be 103 over 67 which is considered healthier but is also a symptom. My pulse rate was always high even at rest about 107 and now at rest might be 80 or 85 but that is also a symptom. Brain fog, poor short term memory, probably a few other things

I haven't observed yet the 2 day interval between doing something and bad effects a couple days later. For me, it has been the next day and it continues for a few days. My stupid watch just gave me the message to get moving. I don't think so. It also seems to think I'm exercising vigorously when I take out the garbage and just sitting it calls moderate or light activity and my battery numbers go down.

If my numbers are ok tonight I may go for a walk

 

[hapl808]

The only major symptoms I don't seem to have is getting dizzy from standing up

I think that's more POTS, although often can be comorbid with MECFS.

The delay for PEM is often reported between 12-48 hours, so it's not exact. More the distinction between feeling exhausted after activity, or feeling okay for awhile and then the 'crash' comes later.

 

[keepswimming]

Yes a reaction the next day would be normal for PEM.

It takes time to learn your limits, I remember when I first got sick thinking I had absolutely no idea where my limits were, it was so difficult. Over time I have got to know my body better and how it reacts to different things, and that has made it easier to pace.

 

[Mary]

Wouldn't it be better to recommend people get as much exercise as they can comfortably do and not go beyond that?

As everyone else said above, this is hard to sort out. I was crashed all day yesterday because I not only cooked dinner the night before (made chili), but I think the straw that broke my camel's back was I did the dishes also. I most often don't do dishes at night - but I had some extra dirty things I just could not face in the morning, and I paid the price yesterday.

Just the activities of daily living (taking a shower if I'm able, doing dishes, cooking, etc.) use all my energy. I never have "extra" energy to let me go for a short walk. If I had a live-in cook and person who could get groceries and do laundry and all I had to do was personal care, I might be able to go for a very short walk now and then.

Raymond Perrin (https://theperrintechnique.com/) on pacing:

Only do half the physical or mental activity you feel capable of. To check this ask yourself could you do double without feeling worse?

The other night when I did the dishes I didn't feel bad while doing them, I had more energy than I usually do at night, so thought I would be safe. BUT I didn't ask myself if I felt capable of doing twice that activity - if I had asked myself that, the answer would have been no. And so if I had followed Perrin's guideline, I would not have crashed yesterday. I would also have gotten up to a load of awful dishes! And I'm well aware I can do more than many of you - but I still can do so little compared to those in non-ME/CFS world.

Anyways, I think Perrin's guideline is very good, no matter how much I hate having to follow it.