How to safely "recondition" from deconditioning when improving in recovery?

[ChrisD]

Quick bit of context about my illness trajectory:

2016: Virus & CFS/Fibro onset
2017: Severe ME Crash (Housebound)
2018-19: Some improvement with pacing + all sorts of interventions (mostly homebound but able to walk 5 mins to shops, short car rides etc.)
2020: setbacks with thyroid overdose & first Cov exposure. (Worsening, mostly housebound)
2021: 2nd Cov Infection - Awful Long Covid - upstairs bound mostly in discomfort.
2023: Finally find things to Get out of LC - mostly housebound
2024: touch wood - treating Lyme with herbs and attacking from other angles with success.

This year I've been able to build up to going out in the car once a week or fortnight for a few hours to a cafe and scenic views. All other days I am quite mobile and semi healthy around the house - don't feel sick unless I'm in PEM after going out, but sleepy and achey still most of the time.

I have been out a few times as a car passenger for a few hours and not had the typical fight or flight, POTS PEM that I've had so often over the last few years with LC. But the most recent time out I did more walking (literally a few 100m to a toilet across a car park) which was the only variable.

I know I am very deconditioned and have gained 25% extra body weight from LC and Meds side effects. I quickly switched to an anaerobic state from this and consequently had a typically bad PEM/pots experience in the night.

So any tips on how to build my aerobic capacity?

I was thinking about the Levine protocol but that seems like a bad idea now.

 

[Blazer95]

You do automatically. Nobody gets so deconditioned that they cant get Up. Its ME/CFS. Its a disease.

There is No deconditioning. Everybody that uses this Term is brainwashing us

 

[ChrisD]

You do automatically. Nobody gets so deconditioned that they cant get Up. Its ME/CFS. Its a disease.

There is No deconditioning. Everybody that uses this Term is brainwashing us

I completely agree when people try to frame the condition as deconditioning as a primary cause. But I am referring to the evident deconditioning as a consequence of disease, i.e. Muscle loss, reduced respiration.

Are you implying that if I am successfully improving in general then my aerobic capacity will naturally increase but perhaps it is lagging behind the initial neuro, nervous/immune system healing?

 

[Seven7]

I believe we do need re-hab like things, but that is testable by yourself and easy to do. I measured my HRV, compared it to general population, and I was in the 85th age range when I was half that!!! So yes I needed something like cardio rehab, so safely, while monitoring my HRV, at the right stage of CFS, I was able to remission myself (also diet ...) I use app ELITE HRV is free, started rehab on laying down bike. It took the guess work from my recovery. Some people think is bad habit to use HRV because you need to "train" yoruself but that was not my case (I am not an anxious obesesive on health person) so it worked like a charm for me. I think it was 3 months later I was in remissions using the HRV (and eating w nutrionist). I also had peptides prioir for 2y. But the remissions was after the HRV (was the only thing new I introduced)

 

[Blazer95]

I completely agree when people try to frame the condition as deconditioning as a primary cause. But I am referring to the evident deconditioning as a consequence of disease, i.e. Muscle loss, reduced respiration.

Are you implying that if I am successfully improving in general then my aerobic capacity will naturally increase but perhaps it is lagging behind the initial neuro, nervous/immune system healing?

Thats exactly what i was trying to say

 

[Rufous McKinney]

But I am referring to the evident deconditioning as a consequence of disease, i.e. Muscle loss, reduced respiration.

Plenty of that going on here. I am wondering if there is anything I can do- I look 80. I"m not 80.

I try to imagine some isometrics, maybe some breathing. But I feel like the muscle has been robbed, stolen.

Makes me think I need to consume some more amino acid's maybe.

 

[Zebra]

Nobody gets so deconditioned that they cant get Up. Its ME/CFS. Its a disease.

There is No deconditioning. Everybody that uses this Term is brainwashing us

Two things can be true at the same time:

1. ME/CFS is a debilitating disease that severely impacts our physical abilities

2. Someone with ME/CFS can become deconditioned from prolonged illness and disuse of the body

 

[Wayne]

Two things can be true at the same time:

1. ME/CFS is a debilitating disease that severely impacts our physical abilities

2. Someone with ME/CFS can become deconditioned from prolonged illness and disuse of the body

Absolutely agree. Over the years when I was at my worst, and had very limited energy, I "generally" saved some of my "resources" to do gentle walking, or something similarly easy on my body. There was often a "price" I paid to counteract my deconditioning, but I always figured the price was less than if I had allowed my deconditioned state to continue sliding unabated. I was fortunate I had that choice. I fully realize many on this forum do not have that choice.

 

[linusbert]

There is No deconditioning. Everybody that uses this Term is brainwashing us

thats absolutely right!!
deconditioning is just another made up bullshit the psychiatric cult came up with to not take responsibility for their failed practices.

i notice this everytime i somehow have a phase where i become better, i automatically move more, do more things.
and why? because its boring and annoying to not do things. i am always in battle on not doing too much.

if there is deconditioning, its only deconditioning by overdoing it.




and its also true that prolonged muscle loss due to resting is real. but medical folks usually do not mean it like this.
in that case what i did is gradually increasing movements. implementing movements on my daily routines like walking to bath. i go a few steps more, just ... 5 and see how thats going.
also i do one leg lift everytime i went up. just add useless or extra movements just one at a time.
i cannot do any exercises like 3x10 any movement.

 

[Blazer95]

thats absolutely right!!
deconditioning is just another made up bullshit the psychiatric cult came up with to not take responsibility for their failed practices.

i notice this everytime i somehow have a phase where i become better, i automatically move more, do more things.
and why? because its boring and annoying to not do things. i am always in battle on not doing too much.

if there is deconditioning, its only deconditioning by overdoing it.




and its also true that prolonged muscle loss due to resting is real. but medical folks usually do not mean it like this.
in that case what i did is gradually increasing movements. implementing movements on my daily routines like walking to bath. i go a few steps more, just ... 5 and see how thats going.
also i do one leg lift everytime i went up. just add useless or extra movements just one at a time.
i cannot do any exercises like 3x10 any movement.

Yes. I also move more automatically. The capacity will Return on its own after becoming better.


I heavily believe in that.

 

[hapl808]

Yes. I also move more automatically. The capacity will Return on its own after becoming better.

Yeah, I have to say this is also my experience.

There are definitely specific things you can do if you're actually 'deconditioned', but being short of breath from normal activities and experiencing PEM - that's not really deconditioning, that just sounds like mild ME/CFS.

Real deconditioning just requires some careful physical therapy. But deconditioned people can get sore and tired from PT - but they do not experience PEM or anything like that. If overdoing it makes you a bit sore and your muscles feel like they are being used in new ways - that could be deconditioning. If you experience any level of PEM or 'switch to an anaerobic state', that doesn't sound anything like deconditioning to me, just the psychologization of physical illness as others here have stated.

The last time I can remember feeling 'deconditioned' was in college when I broke a leg and it was immobilized in a cast for over a month. When the cast came off and I had literally not moved those muscles an inch in over a month, it felt incredibly weak and deconditioned and I couldn't imagine how it would recover. Took me a few weeks to be totally back to normal.

Only the most extreme cases here are not moving muscles an inch. We usually can use the bathroom, turn over in bed, type on a laptop, etc. You may not be peak physical shape, but none of this is deconditioning in my opinion and experience. Being in a hard cast is the only time in my life I've felt deconditioned, and it was an entirely different feeling.

 

[hapl808]

Sometimes medical professionals conflate reports of hospital deconditioning with ME/CFS patients, and it's nonsense. Someone who is even mostly bedbound is usually turning over, sitting up, using the bathroom or a bedpan, etc.

This is entirely different from someone in an ICU who may have a machine breathing for them and be sedated and unable to move a single muscle for hours or days. They often do these studies and claim that 24 hours is enough to see deconditioning - then try to conflate with lying in bed during a crash.

The only part I am uncertain about there is whether the medical professionals who claim this incessantly are morons, or malicious. Sometimes the two can be hard to distinguish.

 

[maddietod]

I crashed over Christmas, and have been severely limiting activities beyond cooking for myself. I am recently able to take short walks without repercussions, and have started doing 10 minute strolls morning and evening. I will increase the distance or the pace slowly; this has worked in the past when I had weakened from a prolonged period on the couch.

 

[Wayne]

I crashed over Christmas, and have been severely limiting activities beyond cooking for myself. I am recently able to take short walks without repercussions, and have started doing 10 minute strolls morning and evening. I will increase the distance or the pace slowly; this has worked in the past when I had weakened from a prolonged period on the couch.

Hi @maddietod -- Sorry to hear about your crash. Wishing you the best as you slowly pace yourself back to some semblance of the conditioning you had prior to your crash--or even better!

 

[wabi-sabi]

So any tips on how to build my aerobic capacity?

My two cents: You can't. PTs that specialize in ME/CFs like the Workwell foundation say that the aerobic system is broken and cannot be repaired in ME/CFS.

What you can do is strength training and stretching. Stay away from cardio.

To exercise safely you need a heart monitor, like Visible or Garmin, since you need to keep your heartrate under your aerobic threshold.

Here's the explanation on how to stay in a safe heartrate: https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf

And here is my favorite online OT for bed exercises:

Here is a yoga program for ME/CFS:

 

[wabi-sabi]

The Levine protocol is meant for people with POTS and without ME/CFS. It would be a very bad idea for someone with ME/CFS, because it's based on cardio exercises. Something like pilates, floor yoga, or floor barre could help you gain strength as long as you stay away from PEM.

I also find the breathing exercises on Visible to be helping me get some core strength back. To clarify: I've improved with medication enough to do breathing exercises. I can't do any exercise without the right medications.

 

[maddietod]

Here's the explanation on how to stay in a safe heartrate: https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf

Thank you so much for this link! I spent an hour this morning looking for exactly this information.

I'm sure the other links are also great, but I haven't gotten there yet.

 

[Florida Guy]

I took the garbage out the other night and when I got back, my hr was over 100. I looked at the watch and it said I did high intensity exercise for 3 minutes. I did not feel too tired and I just walked a short distance. The watch does not seem entirely accurate. It tells me I'm burning 2200 to 2900 calories a day which is a joke since I eat about 1600 calories and am not losing weight. This is going to be more tricky than I thought

 

[wabi-sabi]

I did not feel too tired and I just walked a short distance.

This is how PEM gets you. You feel fine in the moment and then 2 days later you can't get out of bed. That's why your heartrate is your best guide in the moment. Getting an accurate heartrate from a wearable is a challenge-the two I use do not always agree-but you can always take your pulse the old fashioned way if modern technology fails.

What's key to avoiding PEM and exercising safely is keeping your heartrate low.

 

[Florida Guy]

What do you do when you start an activity and see the hr has gone up? If you are walking it looks weird to sit on the sidewalk and a bench is unlikely to be there at the right moment. When I took my walk 4 or 5 days ago, part way through I felt like it would be too long so I stopped and went back

If the calories are not accurate, the pulse reading might be off too. Then I took out the garbage and had a high pulse rate afterward but in neither case did I have pem later. Is it possible to get pem in just one muscle group? Sometimes when I bend or twist to get something, a muscle in my belly gets a cramp though it doesn't hurt later

My legs are where I feel it most, I still have achy legs though I'm mostly over the crash from a couple weeks ago. I used to look up muscle diseases to find the cause, I skipped over cfs because I wasn't worried about fatigue just the pain after walking. It took a while to find out what it was