Exercise strategies?

[Subtropical island]

Apologies if this has already been said:

If you can stand

Tai chi.

I used to try yoga and Pilates
but I find that gardening
in pants with a waterproof butt
is better for me.
(Sit anytime you feel the need
without having to go back
And start again).

Tai chi is good for the pain in my thorax.
You don't try too hard or over extend.
Improves your technique for normal everyday movements
So you don't lose your balance as easily.

Learning very
Very
Slowly.

Also walks as meditation:
focus on good posture and breathing
Knowing when you might need to stop.
Folding chairs are good too.

I love exercise,
and every time I overdo it.
Thus the slow and meditative approach.

Oh, and a heart rate monitor of course, I live by it.

 

[Dechi]

I do 15 seconds of free weight, squats and abdos. Only 15 seconds at a time, and not more than 3-5 times per day, with many hours in between. And only on good days. Sometimes I don't do it for 10 days, smetimes 1 can do it 2-3 days in a row.

It really helps keeping muscle mass and strength. I used to do weight training for many years, though. My body was used to a lot more work than that. I have lost back muscles the most, I have to find a way to get some back.

 

[alex3619]

There are lots of discussions on this here. Maybe someone can provide links.

For those who can do this there seem to be some rules generally found to hold, though not for everyone. Expect very slow gains. Start slow. Advance slowly. Anaerobic exercise only. A heart rate monitor helps, but otherwise avoid any exercise that leads to breathing heavily. Do as many exercises as possible lying down. Start with strength and flexibility. Most wont want to try aerobic. Have long rests between short sets. Rest lying down.

Interval training without long rests will lead to aerobic challenge.

I suspect that heavier weights, as heavy as you can safely handle, and low repetitions will be better than low weights and high repetitions which will lead to aerobic stress.

Exercise has and is being investigated. In ME our aerobic system is broken and does not condition no matter how long or how carefully you train. We can improve flexibility, and get extremely slow strength gain. Expect strength gains you used to get in days to take weeks or even months. Slow persistence, and avoiding relapses, and pausing or reducing training in a relapse, are probably good ideas.

One thing that has been shown to happen is you might get more exercise, but fitness declines and how much you can engage in life declines. This is not a good thing.

For most of us I am with those who have said that if you have the energy try to do something positive in your life with it, even if its small. That can be things that are indeed exercise, like household chores, which can be paced. Exercise can come at the expense of spending all that energy to exercise, and missing out on even more of a life.

 

[jpcv]

Walking is ok for me, even some squats.
But as soon as I try to do some exercise with my upper body, I get some kind of PEM/Crash
Ex: going to the supermarket and moving milk or soap or something like that from the shelves to the cart and then moving it to my car. Or hanging wet clothes/sheets.

 

[ahimsa]

@alex3619 listed some very important issues above but this comment reminded me of a video (posted below)

One thing that has been shown to happen is you might get more exercise, but fitness declines and how much you can engage in life declines. This is not a good thing.

Yes, I was shocked to hear about the case of a woman with relatively mild version of ME who was trying to train for a marathon. She trained for 6 months, was re-tested, and it turns out that her aerobic ability had gotten worse!

This case is mentioned in the video below (Mark VanNess speaking at Bristol about the 2-day CPET):

That story at roughly the 25-26 minute point.

But the whole video is good for anyone thinking about how to do exercise with ME. This assumes that the patient has these specific problems with PEM that show up on the 2-day CPET testing. There could be some patients here that are in some different subset, I suppose.

VanNess talks about working with patients to improve function, help with strength, and so on, while being aware of the patient's limitations. This is not exercise in the sense that most doctors think about (go out and raise your heart rate, train your aerobic ability, etc.) It's very different.

I'm no good at summaries so you'll have to watch the video.

(or maybe there's a transcript or summary written up somewhere)

 

[tudiemoore]

Maybe Isometrics?

Is this type of exercise/activity called something else now?

Way, way back (in time) I used a short program to build upper body strength--some gains, but of course I didn't stick with it long enough to...well, you know--

 

[tudiemoore]

Just watched the video-
A real tear-jerker...

It is the first time I have seen a visual depiction of my physical condition.

To a degree, I have had the idea that I could re-gain a fair amount of physical stamina if I focused, stuck with it, etc.

30 seconds to a better life--that's a good one--I think I'll put that on the refrigerator too--

 

[ghosalb]

My strategy is to not spend more than 50-75% of my energy on that moment, whatever the activity is....remember that exercise to the limit or beyond does not reward us with extra stamina or strength like normal healthy people, actually it is the opposite.

 

[gettinbetter]

But the whole video is good for anyone thinking about how to do exercise with ME.

It was helpful to know we can do some kinds of exercise
Are there any studies out there (equally as thorough) that analyze the various anecdotal remedies for MECFS?

 

[Mel9]

40 seconds plank, every two days. So far, no ill effects.

But not really enough to lose weight!

 

[Dechi]

I should have mentioned that I get no improvement whatsoever, no matter what I do. In the beginning I was trying hard with different types of program that I adapted myself but I always ended up getting PEM. So I finally stopped trying to improve. I just can't. I know how to work and push my body, I've done it for many years. But now it's broken and can"t be fixed.

However sad this is, I've accepted it and no longer expect any kind of improvement. I just make sure I don't get worse.

 

[Dechi]

But not really enough to lose weight!

The only way I've found that works for losing weight is very strict calory management. You don't move = ypu must eat less. A lot less. I'm on 1300 calories per day. I get bored and I eat junk food, so my weight fluctuates. I gain 4-5 pounds, then I lose them. And again.

 

[alex3619]

Maybe Isometrics?

The problem with isometrics is you hold your breath. With ME you don't want to do that. You might be able to modify it to include breathing, or keep the duration short.

Dynamic tension exercise, however, is moving isometrics with breathing. I have tried it. It pits muscle against muscle, and is not static. I do not recall how it went, but I no longer do it.

 

[Hilary]

Would anyone recommend a particular HR monitor?

 

[Dechi]

@Hilary I have the polar a360 and I like it but if I were to do it again I would buy one that can monitor heart rate 24/7. I don't know what brands do it now, they come up with new ones too fast.

My criterias would be :
- continuous heart rate monitoring
- programmable vibrating alarm for anaerobic threshold
- and most of all, accuract for heart rate. Many of them don't have good reviews for that, somyou need to look.

Also if you want to monitor your HRV (heart rate variability), pick one that's compatible with the app you will use. I recommend Elite HRV.

 

[Hilary]

@Dechi thank you that's really helpful. I use an app called HeartMath to do a sort of breathing meditation and it claims to monitor HRV but I really don't think I've worked out how to use it effectively - or maybe it just isn't particularly useful?? I think it's supposed to switch off the fight or flight response.

I'll take a look at reviews of HR monitors. My HR seems completely unpredictable so I think I need to find out what's going on..................

 

[Subtropical island]

@Hilary

My criterias would be :
- continuous heart rate monitoring
- programmable vibrating alarm for anaerobic threshold
- and most of all, accuract for heart rate. Many of them don't have good reviews for that, somyou need to look.

Also if you want to monitor your HRV (heart rate variability), pick one that's compatible with the app you will use. I recommend Elite HRV.

I have a tomtom touch, was cheap when I bought it, company has good reputation for accuracy and monitors 24/7.
When they upgraded the app it became much less useful (original app was about data, the new one is about motivating you to do more :/ )
but it is compatible with other apps that allow for more drill down.

A caution though: recording weird stuff that happens to my heart has been interesting but done nothing to help me do anything about it. Except that if it happens I need to be even more careful in pacing myself.

But I have found that the calorie measure, which is a combination of your weight, age and sex over the time of day and your heart rate, is useful in gauging if I've done too much in a day (includes times when your heart rate was up but you weren't moving about as much).
I use steps too, as sometimes one shows too much when the other doesn't.

Not necessarily recommending it but I use it.
Doesn't have anaerobic threshold on the wrist, only in the app. Wish it did.
(Oh, and don't take the fat to muscle ratio seriously. It might measure change but the absolute numbers are rubbish)

 

[TiredBill]

I've lived with CFS since 1984, and for me the original question: has anyone found any exercise strategies they can do semi-consistently?, can lead to a couple of very different answers from me (depending on how I interpret the question).

On one hand, I could say yes. My strategy for exercise has remained consistent. It is to do only as much as I feel is good for me and to try to be as active as I am able to be, within that constraint.

However, the reality of "what level of activity is good for me" has been all over the map. Early on (when things were really bad) the only thing I felt was good for me was bed rest. At my best, I was doing very intense power yoga (ashtanga/flow) classes multiple times a week.

I've had to accept an ebb and flow of energy. And one prone to change day to day and year to year. Energy levels are something I feel the need to monitor daily. I usually know when I wake up what sort of day I will be able to have.

I like to be active. I like to feel fit. I like to have my life and home in order. But sometimes I realize what I really need to do is to rest and that pushing it will be bad for me.

My crashes are not typically as bad as they used to be. But they still occur when I over-do it despite the warning signs screaming: "bad idea!"

Self-regulation and attempting to be in touch with my limits on a daily basis have been my primary way of managing CFS over the past 3 decades.

It hasn't been perfect. But I'd be far less happy with my life if I didn't try to remain as active as I can be without hurting myself.

So a consistent strategy, with very different levels of exercise and activity.

 

[Dechi]

@TiredBill I love your post ! That's exactly how I feel. Finding the right balance between resting and being as active as possible, within limitations that vary every day. Quite a challenge but I'm happy to see it can be done.

 

[TiredBill]

@TiredBill I love your post ! That's exactly how I feel. Finding the right balance between resting and being as active as possible, within limitations that vary every day. Quite a challenge but I'm happy to see it can be done.

@Dechi Thanks. It is about the entirety of the wisdom I have about dealing with this dreadful condition and needs to be tempered with the realization that this is what's worked for me. I'm as guilty as most to project what's worked for me as a universal solution, so try to work against that bias.

That said, it is nice to hear that someone else has reached similar conclusions. Although I've had CFS a long time, I've largely lived in the shadows. I've had a career in the highly demanding television/film industry here in Los Angeles and the last thing I wanted was for my CFS issues to be public knowledge. So until pretty recently, I told almost no one.

And I've met or encounter few people with CFS in the 30+ years I've lived with this. Two years back I was at the dog park talking with a friendly young actress from England I was acquainted with and she made some sort of seemingly innocuous comment that made me blurt out, "I suffer from chronic fatigue."

Her eyes welled with tears and she barely got out the words "me too" before heading into my arms for a hug.

Like me, she'd told no one for fear of killing her career. We talked for hours, comparing notes. We both had the same sort of fatigue and crash-based symptoms (without the muscle/joint pain and GI issues). I didn't know the term PEM until I joined this forum recently, but I sure understood the concept.

That's about the only interaction I've had with a person with CFS in 25 years.

I figured it was time to change that.

Thanks for sharing your experience with me. This is a pretty isolating illness in any case, and my "strategy" has probably made it more so.

I look forward to getting to know you and the general you.

Best,

Bill