For those of you who are moderate

[Davsey27]

Im curious for those of you who may be functioning 30% to a rare 40-50 percent during an occasional good day

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

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

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

Thank you

 

[Treeman]

I've tried Vim Hoff's breathing techniques and felt slightly better for the rest of the day.

Also tried planking for about 1.5 mins and 20 squats. Had a little muscle ache the day after but didn't push it any further in case I caused some damage.

I do think with little things like the above, a mild form of graded exercise might be possible, but in reality I wasn't willing to push it and crash.

 

[hapl808]

Hard to define moderate or severe. I'm probably more severe now (can't walk at all), but when I was moderate I think most training I did made me worse. Maybe at my 'best' moderate times, doing a stationary bike at minimal resistance for 10 minutes was helpful, but the second I tried to do much more I would crash. I think physical therapy overall made me worse.

In retrospect, not sure it was helpful at all. At the time I could walk about 2-3 blocks, and doing that once every day or two seemed helpful.

Myhill's theory is that if you have any symptoms at rest, you shouldn't be exercising yet. When you do, I think she recommends one day per week. I wish I knew that 10+ years ago.

 

[Hufsamor]

Several people in the me community are looking into this atm.
It’s very easy to overdo, and if you are too sick, you might not be able to exercise at all.
But it seems a lot of us are able to build up some strength.
Biggest problem is, it’s terrible easy to overdo, I’ve done it myself, over and over throughout the years.

When your pem subsides, I would try again, but 30 sec only.
It’s something about stopping before the lactate is building up.

Then wait and see.
If it’s ok, keep on with your 30 sec and build one more jump each week or each other week or once a month.

I’m better now than I have been, and finally I’ve been building up, slowly, with some exercises.
But I’ve found there are some kind of exercises I still can’t do.
I couldn’t ride a bicke or do rope skipping.
But others in a me/cfs group I’m part of have built up to running a little bit or lifting weights.

Before, I’ve tried to do some workouts made for my 80 year old mother:
Sit on a chair , rise, and sit down again 10 times in a row.
I still can’t do that, not even 3 times without getting really sick.
But I can sit on my couch or on my yoga ball and lift one knee at the time.

I can’t do exercises where I repeatedly lift my arms over my head.
I can’t sit or stand for 15 minutes at a time and do exercises.

But I can do some, then a break, and do some again.
I lay down for some, sit for some, stand for a few.

If you can afford it, I would strongly advise to by a smartwatch.
It makes it easier to follow your heart rate, among other things.
(Like- if you’re walking, people might set an alarm to go off when the heart beats gets too high. Then they would stop and wait until the heart settles. I tried this as well, but when I’m standing still, my heartbeats are just rising and rising. I’m better off walking than standing. No way would I have known that without my watch)

And you should (most likely, there are discussions going on) keep an eye on your heartrate while you exercise, and stop if it gets too high.

It’s a bit of a puzzle.
But don’t give up.
Maybe you’re better off with something else than rope skipping?
Maybe do only one jump a day?

 

[ilivewithcfs]

When it comes to this topic, I found the advice of Raelan Agle really helpful (she is CFS YouTuber). She recovered through her exercise programme. She started with very mild strength training and increased intensity and duration little by little. After a year of this she could do serious strength workout multiple times per week. Then she started cardio. She started with 30 minutes exercise every other day, during which she ran for 3 minutes and walked for 27 minutes. Little by little she ran more and walked less. Now she is completely recovered. It's very important to listen to your body and be flexible, do not do too much through all of this. Don't exercise on bad days. When you are at the point, where you do serious workouts, do it every other day and not every day. I highly recommend you to check out her channel, where she goes into more detail. I'm doing a similar programme myself.

 

[FoggyTortoise]

Before, I’ve tried to do some workouts made for my 80 year old mother:

I did 'exercises for seniors' too, in my 30s&40s. There are lots of chair exercises out there (youtube) to help maintain some muscle and circulation, and a surprising number of exercises you can do lying flat on a bed, too.

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

My GP classed my M.E. as moderate and banned me very early on from all cardio exercise beyond walking, as he said it would inevitably make symptoms worse. (So my version of an HIIT 'workout' (?!) is alternating very slow plodding with slightly less slow plodding... )

In my better patches, I have managed a few low-level pilates-style things and felt stronger for it after a while, with improved balance etc. But only in my good patches!

Skipping is way beyond me cardio-wise (as well as banned, hehe), but I can walk, so I do - sometimes outside, sometimes on the spot indoors, sometimes on a trampette to take the impact out of it (if I feel like a walk but my joints hurt).

Sometimes it feels like I'm getting somewhere and perhaps my M.E. is finally subsiding. Then after a brief and glorious interlude I'll be back where I started, for no apparent reason.

I think going slowly from your own starting point and at your own pace (without assuming that your pace today will be the same as it was yesterday or last week) is the crucial thing. Settle in an accept where you are. Then do what you can (sensibly) from there, in a relaxed way, with no pushing whatsoever. As I was advised many moons ago, take a long-term view...

 FoggyT

 

[crussher]

I found following advice of Nancy Klimas very helpful. I believe she noted that a certain ME patient would crash from a 10 minute walk but if that same patient instead: walked 3 minutes, rested 3 minutes, walked 3 minutes, rested 3 minutes, walked 3 minutes, rested 3 minutes, they didn't crash.

This was crucial for me a few years ago in being able to get stronger - breaking up exercise attempts with rests. I added on three minutes altogether every two weeks. Over six months, I went from being able to do only two three minute walks to being able to do: 'eight minutes walking, eight minutes rest, seven minutes walking, seven minutes rest' two-three times per day (so 30-45 minutes walking time in total). My step count went from 3,000 per day to 6,000 per day as a result. Obviously, on crash days, I'm still down and I don't exercise, but this very slow approach worked for me and incorporating the resting was crucial.

 

[FoggyTortoise]

Obviously, on crash days, I'm still down and I don't exercise, but this very slow approach worked for me and incorporating the resting was crucial.

Yes, for me too. Absolutely vital.
I suppose it's yet another application of pacing - just in slots of 3mins (or whatever suits your case), rather than larger chunks of the day.

I remembered another thing I was told long ago about exercise/activity with M.E., which is that we should never do more than 70% of what we feel capable of at any given time, as opposed to the push-push-push, no pain no gain approach. It turns everything on its head, but going slowly and holding back is actually far more likely to lead to long-term improvement for anyone with M.E. or similar. (I can't cite any studies for that, but I'm sure there are some!? and it has certainly been true in my own experience of 23yrs with M.E.)

Foggy

 

[Garz]

much of the above mirrors my experiences

basically, we each have an ideal window to exercise in - whether sick or elite athletes

the bottom of the window is defined by the minimum amount we need to do to send a signal to our system to repair itself stronger in preparation for the next challenge

the upper end of the window is defined by the level beyond which we do more harm than good

the issue is that with CFS/ME/ PEM etc , especially in the beginning, the lower end of the window is very close to the top end of the window- and such there is a very narrow margin between doing enough and doing too much. this is what trips most people up.

also aerobic activities (activities like jogging or HIT) seem to trigger much worse responses than anaerobic ones like resistance (strength) training.

by using this concept i was able to start by walking
then start strength training
and gradually ( v gradually so as to feel my way while avoiding PEM) i was able to work up to working out with weights 45mins every other day - plus a 3 mile walk per day

the trick was to:
1, start well below your current PEM threshold - initially just walking
2, then add strength based exercises - rather than cardio / aerobic
3, be very systematic - increment v gradually
4, focus as much on recovery as the exercise - sleep, food, rest, stress reduction all help recovery - also initially you might need 5 or 7 days between workouts for recovery - later less

if a person is so sick that even walking up 1 flight of stairs makes them crash then i don't know exactly how they would implement this - but for those that are moderate or high functioning it seems to work

 

[Rufous McKinney]

I believe she noted that a certain ME patient would crash from a 10 minute walk but if that same patient instead: walked 3 minutes, rested 3 minutes, walked 3 minutes, rested 3 minutes, walked 3 minutes, rested 3 minutes, they didn't crash.

my recent field trip was exactly like that. I sat, I rested in chairs, benches and planter boxes. I went short distances, very similar to being at home.

I crashed from my 5 hours: for two plus weeks.

 

[Rufous McKinney]

the trick was to:

I move around. Im moderate, and over the last five months, got out of the house maybe 5 times. And crashed after every time.

I sit in chairs. I get up and down out of the chair, alot. My house got larger, so I now walk further each day to just get one glass of water.

Im in better shape 5 months later from doing this More Activity.

But I"m also experiencing rolling PEM, my baseline is sort of worse, and while my I am a bit physically stronger, and my lymphatics are better from moving around more, I am huge crashed much of the time, cognitive is bad, and other symptoms flair.

I focus more on Am I Using My Body Correctly? I focus, if moving, on Stand up Straight, bend properly, use proper alignment, use some core muscles. I'll wash a few dishes, focusing on core and stomach and posture.

Then I'll go collapse.

I pick up a 19 pound toddler. I don't carry her very far, but I can do it.


so I feel a bit like I'm in a graded exercise therapy place, pushing small amounts, but frequently still given the message: that was all too much.

 

[ilivewithcfs]

Another tip I forgot to mention. I alternate the type of exercise that I do. So if today I'm doing the strength training, then the next day I'm walking. It allows my body to recover more efficiently and that way I can do more without a crash.

 

[L'engle]

I found following advice of Nancy Klimas very helpful. I believe she noted that a certain ME patient would crash from a 10 minute walk but if that same patient instead: walked 3 minutes, rested 3 minutes, walked 3 minutes, rested 3 minutes, walked 3 minutes, rested 3 minutes, they didn't crash.

It sounds great in theory but there aren't usually places to sit and rest every three minutes of walking. Resting standing up can be worse than walking. Also if its cold or rainy stopping can just leave you more chilled and damp. It's generally socially unacceptable to stop in front of someone's house and stand there or sit in a folding chair, then move down the block and do it again somewhere else. Most people would just think this was odd or suspicious behavior, not a person trying to recover from illness. You'd also have to make sure you weren't absently looking at anyone's house, window, car etc, so that leaves staring at the road or hoping that people have nice enough gardens to justify looking at without it just seeming very odd.

Maybe it would work in some areas with a lot of parks and walkways but in a typical north american small town or suburb, people on foot who don't keep moving are seen as loitering.

 

[Rufous McKinney]

Just standing is what causes me to kinda of freak out. I cannot just be STANDING here.

I acquired a three legged portable stool, as I envisioned my new Chapter here, on small field trips. My things were shipped, and the stool, never appeared, I gave up the idea, as my butt was likely to NOT be very happy perched on that tiny stool seat, for very long,.

I ordered a portable seat cushion. Because with no subcutaneous fat or muscle left, sitting on cement is painful. Found that out sitting at the Toddler Play Ground. Bones got cold.

My OI is not typical for ME so it's something I seem to not be able to figure out.

turns out I"m surprised how many places there are here, to sit down, including planter boxes, window ledges, steps up into shops, I'll sit down anywhere.

 

[Rufous McKinney]

in a typical north american small town or suburb, people on foot who don't keep moving are seen as loitering.

A famous town decided they can't have homeless using the benches, so they remove benches, or install metal things on the benches so you cannot lie down.

 

[Rufous McKinney]

Most people would just think this was odd or suspicious behavior, not a person trying to recover from illness.

we were eating lunch out, on my last outing. An older couple sat down, on the bench outside. The woman was having trouble, she looked unwell and stressed, the man was very concerned.

Tourists.

They rested a bit, then continued on. I think you have more trouble loitering in residential areas, less so in commercial areas.

 

[Murph]

I found following advice of Nancy Klimas very helpful. I believe she noted that a certain ME patient would crash from a 10 minute walk but if that same patient instead: walked 3 minutes, rested 3 minutes, walked 3 minutes, rested 3 minutes, walked 3 minutes, rested 3 minutes, they didn't crash.

This was crucial for me a few years ago in being able to get stronger - breaking up exercise attempts with rests. I added on three minutes altogether every two weeks. Over six months, I went from being able to do only two three minute walks to being able to do: 'eight minutes walking, eight minutes rest, seven minutes walking, seven minutes rest' two-three times per day (so 30-45 minutes walking time in total). My step count went from 3,000 per day to 6,000 per day as a result. Obviously, on crash days, I'm still down and I don't exercise, but this very slow approach worked for me and incorporating the resting was crucial.

This is really important. I don't know what substance is building up (or being used up) when we do exercise (possible phosphocreatine?). But we can deal with it better if we rest frequently. This means there's far more capacity for bursts of exercise than sustained exercise.

Three ways in which I've noticed this in practical terms:

1. Even when I was basically in remission, cycling was something I could do for far longer than running, because on a bike you can pause pedaling and coast, whereas running you have to output energy non-stop.

2. i took up tennis when I was searching for a sport I could try because there is a natural pause between points. I built up until I could play tennis for an hour, even when there's no way I could walk for an hour non-stop.

3. Lastly I've found walking the dog (refer to my profile pic) in urban areas with lots of traffic lights to be far easier than a long walk along a river.

rests are vital!

 

[Murph]

My exercise tips:

1. How to choose the right starting volume of exercise.

If you're severe, don't. Just rest.
If you're moderate or mild, imagine how much you think you can safely do right now. It might be 10 leg lifts or lifting 2kg. Divide that by 10. Start there. The goal is to choose an amount of exercise that if you told a healthy person that you were doing that, they'd die laughing. A risible amount. An amount you're almost ashamed of. I started with one situp. At times I've done 2 seconds of plank.

The amount you think you can safely do is probably more than you can regularly do. Build up to the amount you think you can already do over 10 weeks; then you're more likely to be able to safely increase from there.

2. How much to increase by?

They say to increase by 10% a week. With weights or timed exercises this is straightforward. Of course If you start with one situp it's hard to figure out how to increase by 10%. One way to do it would be to do one situp every second day for 10 weeks, then move to 2 situps for 5 weeks, then 3 situps for 3 weeks, etc. Does this look slow? It should! you're sick!

3. How often to exercise.

Aiming for every second day is good for me. Every 3rd day maybe if you are more moderate. Maybe weekly is enough.

Don't exercise if you've got PEM. Pick up the program again when you feel okay.

4. What kind of exercise?

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.

What you want is to focus on a small muscle that if you overdo it and it shoots out distress signals, at least the muscle is small so the volume of distress ignals is not too high. A bicep is an example. isolating bits of the core is also a good idea.

Strength exercises are the answer because they don't require endurance, don't stress vascular tone, you can focus on a few small muscles and they permit you to stop at any point and already be at home lying down.

Finally if you build strength, it means when you do try to walk your body is stronger so it's not as hard.

 

[FoggyTortoise]

It sounds great in theory but there aren't usually places to sit and rest every three minutes of walking. Resting standing up can be worse than walking.

 

[Viala]

When I feel well I can do a lot of exercises and it doesn't cause me any PEM. Then one day it would change and I have to stop all physical activity even the basic things.

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.