For those of you who are moderate

[FoggyTortoise]

Sorry for my last comment. Must have pressed reply by mistake.
Meant to say in reply:
I have sometimes used a timer and walked for a minute (slowly by most people's standards but comfortably for me), then plodded even more slowly (more like a shuffle?!) for the next 2 (or however many I need), then walked 'properly' again for 1, and so on. It's not a complete rest, and probably looks ridiculous, but it does allow time to recover before continuing, and avoids having to stop and sit on garden walls etc, which as you say is often frowned on. Might not work for everyone but it does the job as a workaround for me.

 

[maddietod]

I like walking because it gets me into some fresh air. But I call it ambling, never increasing my heart rate. I want to re-condition my leg muscles, and I'm not in a hurry. So I walk partway down the block and back, and some weeks later I notice that I'm walking to the end of the block and back, etc.

I've noticed that I have no trouble shopping once a month at a small supermarket. I think it's because I move through very slowly, pausing and leaning on the shopping cart without really noticing I'm doing it.

 

[hapl808]

In my case it's not about expanding the energy envelope, at least that's not how it feels, it's about if I have the energy in the first place or not. When I felt good I could do heavy lifting without any preparations, after months of low energy. If I feel bad, any exercise is draining.

Might be true for me. Hard to remember since I've had no energy at all for almost ten years. But prior to that I'd occasionally feel like I had energy and could do some heavy lifting - but even then, I couldn't 'push' myself like I used to, or else I'd crash. Unfortunately it was both hard for me to judge pushing, and it wasn't practical since I might only have good days a few times a month back then, and I couldn't accept that was my limit. Of course, now that seems like a dream since I haven't had a single good day in almost a decade.

 

[Rufous McKinney]

This is a valuable and interesting discussion....

could you modify the title to include its about exercising when moderate? Then I"d maybe be able to find it again?

 

[Viala]

Might be true for me. Hard to remember since I've had no energy at all for almost ten years. But prior to that I'd occasionally feel like I had energy and could do some heavy lifting - but even then, I couldn't 'push' myself like I used to, or else I'd crash. Unfortunately it was both hard for me to judge pushing, and it wasn't practical since I might only have good days a few times a month back then, and I couldn't accept that was my limit. Of course, now that seems like a dream since I haven't had a single good day in almost a decade.

I think it's fairly easy, if there is no PEM afterwards it's ok to do gradually a little bit more exercise, but if there's any sign of malaise we need to do less or stop. There's no expanding anything then, we just use up the energy we have. At least this never worked for me, it never happened that I pushed myself when I felt I shouldn't and miraculously felt better on the next day. If I have to push myself it always ends in a crash, 'pushing' means I really do not want to do it and I shouldn't. When I felt good I didn't even think about pushing or anything like that, I just did what I wanted to do and enjoyed it, it was natural.

My pem usually starts the same day or on the next day, but I also had one month when I could do really a lot physically and then slowly day after day I started to feel worse. I knew I had to do less, but it was difficult to stop once it got better. Can't say for sure why it happened like that, I am trying so many things that it could be that some effect wore off.

 

[Viala]

I ask because I did about 5-10 mins of jump roping a few days ago and still pem'd

I noticed that anything which helps to move lymph a lot contributes to bigger pem. It even happened with not that strong lymphatic massage, which was quite surprising.

 

[Rufous McKinney]

which helps to move lymph a lot contributes to bigger pem.

lymph contains all these stored up poisons, I am convinced. Maybe LPS is lurking. Maybe other forms of abberated metabolites. So massages, acupuncture, or taking 20 boiling epsom salt baths: are all dangerous in my case.

 

[hapl808]

I think it's fairly easy, if there is no PEM afterwards it's ok to do gradually a little bit more exercise, but if there's any sign of malaise we need to do less or stop. There's no expanding anything then, we just use up the energy we have. At least this never worked for me, it never happened that I pushed myself when I felt I shouldn't and miraculously felt better on the next day. If I have to push myself it always ends in a crash, 'pushing' means I really do not want to do it and I shouldn't. When I felt good I didn't even think about pushing or anything like that, I just did what I wanted to do and enjoyed it, it was natural.

I guess not easy for me because PEM has a delay, and I was never mild enough that I didn't frequently crash just from everyday life. One full eight hour workday caused me to crash a bit.

Although, I might've been mild enough prior to my serious onset event in SE Asia. I already had problems sometimes with fatigue and sleep and such - but I could work out 3-4 days a week with no issues at all. I did have limits of working out, though, which was frustrating because I was trying to build muscle. But my 'limits' back then were that I couldn't do high intensity interval stuff, cardio, etc. But moderate to heavy lifting was fine.

But for the last 25 years, I've never been that mild. And the last 10 years, even walking is out. Ah well.

 

[Rufous McKinney]

Ah well

Sigh

I think it's fairly easy, if there is no PEM afterwards it's ok to do gradually a little bit more exercise,

its NOT easy in my opinion. maybe I"m just too far down the path of hardly can do much of anything any longer.

It takes me weeks of supposedly recovering from the last fall apart, to end up with maybe one day that I feel sort of OK-ish for a few hours.

The final choice I have is to shut down any cognitive activity. At which point, we don't feel very alive, do we?

Can I just stare at the ceiling for hours every day? Then it would be solved?

 

[Mouse girl]

no, it's ananerobic exercise that is super hard on us. Example: weight lifting is much harder. Now, all exercise and activity is tricky but i do find that some areobic exercise does help me to be at a higher function level. Fast moving is better than slow moving for me, always has been. Like dancing for a minute or five if up to it for example. but doing housework with my arms, that has more push and pull, so weight like exercise, is so hard on my body. everyone is so different and it is so hard to figure out what is best because it changes on the day or week or year.

 

[FoggyTortoise]

I think it's fairly easy, if there is no PEM afterwards it's ok to do gradually a little bit more exercise, but if there's any sign of malaise we need to do less or stop.

I understand what you're saying here, but I don't agree that PEM or lack of it should be our gauge. It's far too risky in my books, but maybe it depends on your level of functioning to begin with and what a crash looks like for you.

I prefer to use the old 70% rule, and to always bear in mind the fact that PEM can be delayed. In theory you never get as close to a crash that way (though I realise we all overdo it sometimes). You might also never achieve your 'best,' but it depends how you define that. Is it better to function at a slightly lower level but stay relatively steady at that level, or is it better to push yourself into a crash because that way you achieve more on the good day? For me, steadiness is far more valuable and far more manageable than the swings that are inevitable with the push/crash approach (even if the pushing is tiny and slow increments).

Obviously there are occasions where I knowingly overdo it in order to see a precious friend or whatever, and accept the crash that follows, but generally I find life is much calmer, more stable, less frustrating, when I stay well away from crashes. I think this approach has played a key role in the improvements in energy/capacity that I've seen over the years, but of course I can't prove that.

 

[Viala]

its NOT easy in my opinion. maybe I"m just too far down the path of hardly can do much of anything any longer.

It takes me weeks of supposedly recovering from the last fall apart, to end up with maybe one day that I feel sort of OK-ish for a few hours.

That's how I differentiate it, unless I feel great and almost like healthy, I do not do any exercises or additional activities because it always uses up the energy that I already have. Going shopping is often enough and too much. When I was milder my PEM wasn't that strong so even when I overdid it, I recovered quickly and it was safer to do more activities.

Resting was helping much more back then as well. I think that resting a lot is what gives us the energy back, especially in the early stages, activities, not so much. Once we're in remission and our metabolism switches back to normal then exercises are good. It's funny that doing nothing is way more difficult than doing too much. I strongly encourage anyone who is mild or moderate to rest as much as possible.

 

[Viala]

I guess not easy for me because PEM has a delay, and I was never mild enough that I didn't frequently crash just from everyday life. One full eight hour workday caused me to crash a bit.

If PEM is much delayed it is more difficult. I guess it depends on the person, most of the time now I feel I overdo it already during the activity, even before PEM starts. It's a specific feeling in the body, not like anything else, easy to ignore though when one is focused on a task. It's subtle but it's clearly there, when I'm well I don't have this feeling at all.

Then as soon as I feel any sign of fatigue even if it is only mild, I need to stop. I think the problem is that we adjust to lower energy levels over time and it is difficult to say what we can do when we're better, it feels ok-ish and it's not.

Cortisol and adrenaline can delay or mask PEM, it happened to me many times when I had more work to do, as soon as I finished the work I started to feel worse again. Later on that cortisol was not enough and I got worse soon after starting my work. I don't think low cortisol is the problem here, only that extra cortisol can help with inflammation, it works a bit like a band-aid, but it is not a source that we can use up indefinitely.

 

[Rufous McKinney]

I do not do any exercises or additional activities because it always uses up the energy that I already have.

Thats the brutal reality you articulated there, and I'm afraid its mostly true. It gets proven repeatedly.

Two days in a row of feeling better just doesn't seem to happen for me very often.

Which means I"m always in a PEM state from something. From something four days ago, something else three days ago, and the things overdone, two days ago.

 

[L'engle]

Not walking. Let me say that again. Not walking. I think this is the biggest trap. People think walking is the easiest and safest exercise. That's true for healthy people, not us. It drains your blood to your feet, uses every muscle in your body and when you get tired you still need to get home. Taking regular breaks when walking is hard. Walking is completely inappropriate for us. Jen Brea made herself much worse by going on a long walk. I recently did the same. Instead choose a strength exercise you can do sitting or lying.

I agree. I do much better with seated or lying down exercise that builds strength or flexibility.

I used to love taking long walks when I was healthy! I've kept doing it to the point where I seriously overdid things so many times that it just doesn't even seem enjoyable anymore.

 

[Murph]

Fast moving is better than slow moving for me, always has been. Like dancing for a minute or five if up to it for example. but doing housework with my arms, that has more push and pull, so weight like exercise, is so hard on my body.

everyone is so different and it is so hard to figure out what is best because it changes on the day or week or year.

I agree with both these!

1. I think the fast/slow thing is about orthostatic intolerance. going fast forces muscles to really contract and send blood back to the heart. it also generates adrenaline and other vasoconstrictors that don't come from slow movement.

Now, I can't run or dance really but slow ambling around a supermarket is shockingly bad for me; worse than you'd expect given the amount of energy outputted. A game of tennis with a few spurts of fast movement is better than the same duration of slow ambling.

2. I agree everyone is different. One factor I believe in is that some of us have preserved certain muscle groups in better condition than others. I remember reading that some severe people can crawl okay even if they can't walk; I know for me my lower body can do things still whereas I'm very prone to get PEM from using my arms, just like you describe. But that's also why I'm dedicated to the idea of doing some resistance exercise (at a level I control) to make my upper body stronger.

 

[L'engle]

My pem usually starts the same day or on the next day, but I also had one month when I could do really a lot physically and then slowly day after day I started to feel worse. I knew I had to do less, but it was difficult to stop once it got better

I'm having something like this. It's almost guaranteed to end so I'm trying to enjoy it while it lasts. Maybe the anti-inflammatory supplement I just started.

 

[L'engle]

Now, I can't run or dance really but slow ambling around a supermarket is shockingly bad for me; worse than you'd expect given the amount of energy outputted.

I find slow movement is worse too. I end up leaning on shopping carts and counters. Especially if it is airless in the building.

 

[Long Haul Mono]

IHave you found any cardiovascular conditioning and or weight training program to be helpful in expanding your energy envelope?

Full body workout seems to do the trick for me, for now.

I have hear that even those with mild ME should avoid aerobic exercise.

Avoid anaerobic exercise, ie keep your heart rate below your calculated (for your age) anaerobic range.
I speak from experience when I say a crash can happen very fast if you stay in that heart rate range.

 

[Viala]

I'm having something like this. It's almost guaranteed to end so I'm trying to enjoy it while it lasts. Maybe the anti-inflammatory supplement I just started.

That's how it was for me too. This way or another it led to worsening. I am curious though what would happen if I didn't do any additional activities, could it last much longer or lead to remission? Would it always end if I did more than usual, sooner or later? It's just hard not to do anything, especially that there's like million things that needs to be done.