Have you limited your activity more than you needed to?

[dave30th]

Discussion split from United Kingdom: ME Association news

One question I have that is prompted by the Riley editorial but is not about the Riley editorial. I've had a couple of people tell me that, after many years never exceeding what they believed was their level of activity for triggering PEM, and therefore avoiding PEM, they did at some point inadvertently exceed their threshold, and it turned out they didn't get PEM at all. And they came to the conclusion that they were substantially more recovered than they had believed they were--and perhaps had been more recovered for some unknown period of time. Do others have this kind of experience? Do patients tend to push against their boundaries regularly or do many not do so?

It's absolutely not the same as saying patients have "fear avoidance" or a pathological fear of activity--absolutely not! In these cases, there was a very reasonable fear of PEM, but they didn't recognize that after many years of limiting activity, they didn't respond with PEM anymore.

 

[Haveyoutriedyoga]

One question I have that is prompted by the Riley editorial but is not about the Riley editorial. I've had a couple of people tell me that, after many years never exceeding what they believed was their level of activity for triggering PEM, and therefore avoiding PEM, they did at some point inadvertently exceed their threshold, and it turned out they didn't get PEM at all. And they came to the conclusion that they were substantially more recovered than they had believed they were--and perhaps had been more recovered for some unknown period of time. Do others have this kind of experience? Do patients tend to push against their boundaries regularly or do many not do so?

It's absolutely not the same as saying patients have "fear avoidance" or a pathological fear of activity--absolutely not! In these cases, there was a very reasonable fear of PEM, but they didn't recognize that after many years of limiting activity, they didn't respond with PEM anymore.

A patient must be rather mild in the first place to be able to avoid pushing themselves for a considerable amount of time in the first place! I cant avoid it, getting up, washing, eating and doing some online work is enough to cause problems.

 

[Trish]

Not my experience. I've always pushed to my limits and suffered PEM as a result. The idea that I would stay so much below my limit that I never hit my boundaries, and therefore didn't know my boundaries had changed seems foreign to me. I'm always straining at the leash to do more, and suffering the consequences.

This is partly out of necessity, with no carer and with some caring responsibilities. And partly because I can do some things within my house, so it's all too easy to do just a bit too much.

I guess it could be different for people who have a live in carer, so can choose how much or how little to push themselves beyond a previously established 'baseline'.

I think it's the 'perhaps had been more recovered for some unknown period of time' that suprises me. Surely they would notice a diminution of daily symptoms and fatiguablity giving a clue that their severity level had changed.

 

[Holinger]

One question I have that is prompted by the Riley editorial but is not about the Riley editorial. I've had a couple of people tell me that, after many years never exceeding what they believed was their level of activity for triggering PEM, and therefore avoiding PEM, they did at some point inadvertently exceed their threshold, and it turned out they didn't get PEM at all. And they came to the conclusion that they were substantially more recovered than they had believed they were--and perhaps had been more recovered for some unknown period of time. Do others have this kind of experience? Do patients tend to push against their boundaries regularly or do many not do so?

It's absolutely not the same as saying patients have "fear avoidance" or a pathological fear of activity--absolutely not! In these cases, there was a very reasonable fear of PEM, but they didn't recognize that after many years of limiting activity, they didn't respond with PEM anymore.

This happened to me many years ago and I still got PEM but something had clearly shifted in a positive direction. Unfortunately it was a transitory moment as I relapsed back to where I was before. Nothing had changed in my life to cause the better and then worse health. Pretty frustrating all round.

 

[NelliePledge]

I would qualify what @Haveyoutriedyoga said by adding you have to be diagnosed and also be aware of pacing, have financial and practical support from a partner or family as well as being relatively mild in order to be in a position to limit activity by choice. As an undiagnosed mildly affected person I didn’t know to stop pushing, as a diagnosed person I was pushing myself to work or get back to work for 2 1/2 years. Now I’m moderate I still have to push to do my ADLs and the limited socialising I do. If I have better days I do stuff that needs doing or spend time with family.

 

[Haveyoutriedyoga]

I would qualify what @Haveyoutriedyoga said by adding you have to be diagnosed and also be aware of pacing, have financial and practical support from a partner or family as well as being relatively mild in order to be in a position to limit activity by choice. As an undiagnosed mildly affected person I didn’t know to stop pushing, as a diagnosed person I was pushing myself to work or get back to work for 2 1/2 years. Now I’m moderate I still have to push to do my ADLs and the limited socialising I do. If I have better days I do stuff that needs doing or spend time with family.

Oh to be brought a cup of soup!!

 

[Kitty]

Do patients tend to push against their boundaries regularly or do many not do so?

I imagine that at the very least, most of us have to push against some boundaries, some of the time. If nothing else, boundaries change.

Also, you'd need to have full care support—or be astonishingly lucky—not to exceed a PEM threshold for months or years on end, because things go wrong. Getting stuck in traffic, picking up a virus, a drain blocking up, needing dental treatment, a child or elderly parent getting ill...all sorts of unavoidable events upset the best-laid pacing plans.

 

[MrMagoo]

Not my experience. I've always pushed to my limits and suffered PEM as a result. The idea that I would stay so much below my limit that I never hit my boundaries, and therefore didn't know my boundaries had changed seems foreign to me. I'm always straining at the leash to do more, and suffering the consequences.

This is partly out of necessity, with no carer and with some caring responsibilities. And partly because I can do some things within my house, so it's all too easy to do just a bit too much.

I guess it could be different for people who have a live in carer, so can choose how much or how little to push themselves beyond a previously established 'baseline'.

I think it's the 'perhaps had been more recovered for some unknown period of time' that suprises me. Surely they would notice a diminution of daily symptoms and fatiguablity giving a clue that their severity level had changed.

Yeah, straining at the leash is me! There are some things which physically ruin me but they’re worth it for the mental benefits. I have my hair done. When I was worse I left it, as soon as I could start again, I did. It just makes me happy.
Same with the cat, she is a big energy sucker sometimes - emergency vet visits was a phase I could do without revisiting, and the moulting needs so much hoover/brush/sweeping actions. But they are a price I’m willing to pay for my little sidekick.

 

[MeSci]

Same here; like the vast majority of people here, I always do at least as much as I can do without getting PEM, but overactivity always, or nearly always, produces PEM.

Perhaps people who don't are suffering from depression?

 

[Hutan]

I imagine that at the very least, most of us have to push against some boundaries, some of the time. If nothing else, boundaries change.

Also, you'd need to have full care support—or be astonishingly lucky—not to exceed a PEM threshold for months or years on end, because things go wrong. Getting stuck in traffic, picking up a virus, a drain blocking up, needing dental treatment, a child or elderly parent getting ill...all sorts of unavoidable events upset the best-laid pacing plans.

Yes. I think you would have to have a lot of support and be very lucky to not have things happen that require you to do more than usual from time to time and therefore test any self-imposed activity limit. Certainly, I don't think you could go

many years

without causing PEM, unless your threshold for causing PEM had increased so that you only had very mild ME/CFS or were completely recovered.

Maybe some people who do recover might (validly) retain a bit of fear of a relapse, and so not take on a job that they know would have demanding and inflexible requirements or they might not take up marathon running. But, for people operating with activity well below the level that allows for earning a decent income and normal levels of socialising outside the house, I think the person not at least occasionally pushing at the boundaries would be very rare. Perhaps co-morbidities such as depression might cause this situation? But, even then...

Can you tell us more about the situations you mentioned @dave30th?

 

[Yann04]

In my experience I have an extremely hard time stabailising at a level where I don’t produce PEM. To the point where in the vast majority of cases I feel like I’m overdoing it and in a sort of constant rolling PEM.

I don’t think there’s been a period when I was doing less than I could. And even in periods where I wasn’t in rolling PEM, I was constantly pushing the limits in hope they had magically improved.

 

[Hutan]

As requested, I've added a poll.

I think that it would be very difficult if you did find that you had extra capacity for activity that you didn't know you had, to actually know how long you had the spare capacity.

 

[Mij]

I restricted my activities for 6 years but the delayed PEM still occurred as if I didn't rest at all. Those were the earlier years. You can rest for 30 years and you will still get PEM if you go over your personal limit.

 

[Mij]

I don't think my threshold has ever increased even when felt 90% improved. It just got worse the more I pushed myself into delayed PEM.

 

[EndME]

Discussion split from United Kingdom: ME Association news

One question I have that is prompted by the Riley editorial but is not about the Riley editorial. I've had a couple of people tell me that, after many years never exceeding what they believed was their level of activity for triggering PEM, and therefore avoiding PEM, they did at some point inadvertently exceed their threshold, and it turned out they didn't get PEM at all. And they came to the conclusion that they were substantially more recovered than they had believed they were--and perhaps had been more recovered for some unknown period of time.

Do you mean people that haven't pushed themselves beyond some threshold to experience PEM for some time and upon pushing themselves notice that they don't experience PEM at all anymore or people that haven't pushed themselves beyond some threshold and then notice that their threshold is actually higher than it once was?

I think these are rather distinct situations, because in the first scenario you'll end up with a rather circular argument if you define the characteristic feature of ME/CFS to be experiencing PEM (and set aside cognitive problems, sleep problems, orthostatic intolerance, etc for the moment).

 

[poetinsf]

I think MECFS patients are way more likely to exert more than they are allowed to, not less than they need to. Those couple of people that you heard from are probably more exception than the rule. The typical exertion limit is so low that it's practically impossible not to go over unless you are incredibly disciplined. That's something I never had. I constantly poked my limit, therefore suffer almost weekly PEM for years.

Even if you practice 50% solution, you are bound to breach the limit occasionally. It's not like there is a speedometer for exertion. You have to guess the cumulative effect of exertions for the day (or past 3 days), and statistical chance for staying under the (unknown) limit is zero over time unless you practice 0% solution. The queue will grow and overflow the limit as the arrival rate (of exertion) approaches the departure rate of (the exertion effects)

Mildly sick patients with lots of headroom might be an exception. They have enough reservoir to absorb the arrival of exertion event and then throttle the arrival on the fly in time.

 

[MrMagoo]

A side thought. I live alone with a cat, so I am able to control my environment. We often sit is silence, I don’t have to keep the place tidy/visitor friendly every day etc.
I have had some time staying with relatives and I don’t think I could live with other people. They make noise, they talk to you, the want to do stuff, you have to be considerate of them. It’s exhausting. I genuinely believe I’d be less well living with another person, even though in theory I could be “looked after” better in terms of housework, cooking etc.

 

[Kalliope]

An observation professor Kristian Sommerfelt has told about, is that ME patients tend to always be close to their limits. If they improve, they often just expand their activities until they reach the same "wall"; that the level of symptoms stops them from doing more. I'm paraphrasing and he probably explained it much better but this was recognisable to me.

I've had large fluctuations several times during the years I've been ill. From bed bound to being able to go for walks, and think it's hard to wrap my head around someone staying in bed if they actually could have done more.

 

[Mij]

My ME specialist advised me to do nothing or limit my energy expenditure when I started feeling better years ago. The cumulative consequences if you're not pacing or getting adequate rest in between activities even when you feel good is something to pay attention to.

That's very difficult to comprehend for some pwME in the earlier years of illness.

 

[MrMagoo]

If I absolutely overdo repeatedly I get horrible vertigo which stops me doing anything