Just finished an "intelligent" program of cardiac rehab and doubled my exercise capacity

[Wishful]

perhaps when our muscle cells get unfit, they change in some way that means they leak ATP if we use them?

I just did a quick check of slow vs fast twitch muscles. They differ in the amounts of mitochondria and the blood supply (among other variables). It sounds like regular activity, such as walking daily, uses (and builds) slow-twitch muscle tissue (lots of mitochondria and blood supply). Little-used muscles (the ones we use for overhead window washing, for example) would be fast-twitch (low mito and blood supply). Maybe PEM develops from using fast-twitch muscles; their poor endurance means it wouldn't take much exertion to trigger whatever causes PEM.

The two types of muscles also differ in how much the mitochondria are linked together: "Both aging and chronic periods of muscle disuse result in an increase in fission, relative to fusion, regulatory proteins.72 This imbalance results in mitochondrial populations that are smaller and more fragmented, and tend to produce more ROS. " In another thread I pointed out that there's a significant number of links between what's observed in ME and the functions of alpha-synuclein. In this case, a-syn causes fragmentation of mitochondrial networks. If extra a-syn (in exosomes) was the 'something in the blood', it might be causing mitochondrial fragmentation, and thus poor energy production and more ROS damage.

Here's the paper I found on mitochondria in muscles: https://www.sciencedirect.com/science/article/pii/S2666337619300083

 

[Hd-x]

No, because they would not let me push that much. They never let me go to a point where I had any pain or burning. They were so very careful and cautious but they still gave me a green light to increase resistance and time when they thought I was ready. It has been very slow and having experienced this, I'd guess that many have had trouble from trying to increase too fast.....
.....while my rehab program tested my oxygen Sats every five minutes, that reading would not reflect the muscle’s uptake of oxygen.

I personally believe that the fragmented mitochondria issue, can at last still be fixed if we find however so a way to do some exercise(s). The problem is still there is just little ME/CFS research and it seems you have great doctors that are really knowing what they are doing.
In my country would never any doctor do such a monitored rehab training program like yours.
There should be more Doctors like yours.

After that I did my routine on the leg press--not part of the evaluation, but just cause I felt like it.
Today, no PEM!

This are great news, I feel happy for you.

 

[Gingergrrl]

I forgot about theaters! Yes, I can climb to my theater seat with no problem wearing compression knee socks. Those steps are so wide that it feels different from trying to march up a staircase in an office building.

Do you mean that wider steps are easier for you than a staircase w/short steps in an office bldg (or vice versa)? I haven't found any difference re: the size or the width of the step and for me it is the number of steps in the staircase. For about four years, I could only climb one step (such as stepping out of a car, as the passenger, and then up onto the curb into the wheelchair).

Now since this remission, I have not used wheelchair for (almost) two years, I can walk unlimited distance on flat surface, and can easily walk over five miles in a day. But I still cannot climb more than 5-6 stairs. I have not tried stairs yet with compression socks, and my gut is that they will not change anything re: stairs, but I cannot say for sure until I try it.

I lived on the 5th floor and getting myself plus groceries and everything else up there was a nightmare.

That is amazing and I (truly) cannot envision any scenario in which I could climb up to the 5th floor (which is the floor I live on in my current apt bldg). My bldg has two elevators, and they have never both been broken at the same time, so thank God, I have been very lucky! Even if I achieve pre-illness level in every other aspect of my life in the future, I do not believe that I could ever climb stairs like I did pre-illness. It's interesting how different we all are.

They put you inside a big plastic stall, put a clip on your nose and a big piece in your mouth and then you have about 10-15 different breathing exercises to do, 4-5 times each.

This is definitely a PFT (pulmonary function test) although it can be done without being inside of a big plastic stall.

eta : I checked my report with the Po2 at 68 and it is a blood gas test.

That is the arterial blood gas test (and totally separate from the PFT).

@Sushi @Gingergrrl I would disagree you don’t have dysautonomia if you can climb stairs. I’ve been tested with neurally mediated hypotension, a type of orthostatic intolerance, and I can climb stairs.

Maybe one is true without the converse being true (and I am just speculating and do not know)! I know in my case, dysautonomia is a huge piece of why I cannot climb stairs but there are other issues as well and it is not the total picture (for me).

(core muscles, notably. I can do a fair few situps without major problems.)

I am similar and can easily (now, not before!) do 100 sit-ups/crunches. Exercises like sit-ups in which I am lying flat on the floor are not problematic for me at all. In my case, there is not even a remote comparison or similarity to an exercise that is done lying flat versus climbing stairs.

https://jnnp.bmj.com/content/74/suppl_3/iii31

Here's the paper I found on mitochondria in muscles: https://www.sciencedirect.com/science/article/pii/S2666337619300083

Thank you both for the links and I bookmarked them on my computer to read later.

 

[Sushi]

Do you mean that wider steps are easier for you than a staircase w/short steps in an office bldg (or vice versa)? I haven't found any difference re: the size or the width of the step and for me it is the number of steps in the staircase. For about four years, I could only climb one step (such as stepping out of a car, as the passenger, and then up onto the curb into the wheelchair).

The very wide steps in a theater are easier for me as they are so wide that you take a few steps on a level service in between each step—this gives recovery time. In an office staircase there is no break in the stepping up.

 

[Gingergrrl]

The very wide steps in a theater are easier for me as they are so wide that you take a few steps on a level service in between each step—this gives recovery time. In an office staircase there is no break in the stepping up.

That is interesting and in my case (whatever is at the core of my issue with stairs), it would not make any difference if the steps were wider between each stair. Wouldn't it only be a few seconds of recovery time (what you described)? When I am in a situation where I have to climb up stairs (it's rare b/c there is usually an elevator or alternative but it happens), it takes me hours of lying flat to fully recover.

 

[Sushi]

it would not make any difference if the steps were wider between each stair. Wouldn't it only be a few seconds of recovery time (what you described)?

It just gives me the time to take a few steps on level ground using other types of muscles. BUT, I could not do this without compression knee socks as they prevent blood pooling in the legs and mitigate the fall in BP from standing.

 

[Davsey27]

Is this cardiac rehab good for only mild and moderate CFS?

 

[Wishful]

I would guess that it's good for even severe cases, but the exercises and improvements would differ in proportion to the severity. For someone who can only raise their heads 8 times a day without triggering PEM, maybe they could improve to 10 times a day. As with most treatments for ME, you would have to experiment to see how well it works for you at what level.

 

[Sushi]

Is this cardiac rehab good for only mild and moderate CFS?

I agree with @Wishful -- A knowledgeable PT or exercise physiologist would need to start any patient from where they are, but I would think that a program that is specifically designed for a severe patient could help too--it would just need to be at a level that didn't cause PEM. That would mean only tiny increments in movement done at an extremely slow pace. I am moderate but have been amazed at how much this has helped me. I am continuing with the same sort of program at a community gym and have continued to get stronger and have more stamina. It is just very slow!

 

[Dechi]

I am continuing with the same sort of program at a community gym and have continued to get stronger and have more stamina. It is just very slow!

I’m very happy for you ! I wish the same would happen to me, I’ve been doing different little exercises for 5 years but I never have improved one bit. I can’t complain, at least I can do a bit of exercise.

 

[Sushi]

I am continuing with the same sort of program at a community gym and have continued to get stronger and have more stamina. It is just very slow!

Update: Well, so much for the gym with Covid-19 everywhere. So I got this device yesterday. I have only experimented with it for a day, but, so far, I think that many of us could manage it. There are 8 levels of resistance and even the #8 is not too much of a challenge. I am starting very low and I’ll see how it goes. Has any one else tried the Cubii?

 

[Dechi]

@Sushi please let me know and tag me if you remember. I’m desperate to find some kind of workout I can manage. I had found a nice lady doing low intensity workouts for seniors on Youtube but it made me crash after a few times,

It’s very expensive so it would have to be really worth it for me to buy it.

 

[Sushi]

@Sushi please let me know and tag me if you remember. I’m desperate to find some kind of workout I can manage. I had found a nice lady doing low intensity workouts for seniors on Youtube but it made me crash after a few times,

It’s very expensive so it would have to be really worth it for me to buy it.

I was also crashing trying low impact workouts on YouTube yet I know from experience how important it is to maintain muscle and how quickly they atrophy. Yes, it is expensive though also can be returned. I have tried it for two days and so far so good, but I'll keep at it and update here. I can feel my muscles working though it is very low aerobic, so we'll see if it can both strengthen muscles and not PEM me. I only use it for 5 minutes at a time and then come back to it later. Hoping it is beneficial!

 

[Rebeccare]

Has any one else tried the Cubii?

I haven't, although I use a little pedaling device that looks kind of like it. It's just that my thing mimics an exercise bike instead of an elliptical.

I started off doing two minutes a day on it after attempting five minutes on my first day and crashing. In addition to monitoring my heart rate, I stop when I feel good and still feel like I can do more--I aim to do about 60% of what I feel I'm capable of. I've been able to work up to an average of 20 minutes a day over the course of several years.

It’s very expensive so it would have to be really worth it for me to buy it.

I've seen other brands that are closer to $150, although they might not have the same features. You can try doing a search on Google or Amazon for 'under desk elliptical'

 

[ChookityPop]

A few years ago, my Endo (who is not my main doctor and treats my thyroid issues) had said if it did not plateau, I could end up on a ventilator. My muscle weakness and lack of oxygen feeling is 100% gone from my treatments (since 2018) and has never returned.

Very interesting!! What kind of treatments have you been on?

 

[Sushi]

Very interesting!! What kind of treatments have you been on?

Hi ChookityPop, you might want to send Gingergrrl a private message (Conversation) so that this thread stays focused on mild exercise strategies!

 

[BrightCandle]

For strength training you can go mild if you use resistance bands instead of weights, they can still scale up to serious weight training too if you need but it is a lot safer with bands for those with issues, I can't cardio anymore but I can still do some strength training which is at least retaining some capacity to move around without PEM. I got a set of 4 bands (brand is coregain) to replace the dumbbells/barbell as my ME got worse and have been able to gain muscle without the injuries. I found my strength varied a lot day to day as the ME got worse and that meant a lot of changing the weights on my spinlock dumbbells and a lot of under and overweighted training difficulty. I also found I was getting injured a lot, possibly just from putting them down but also positioning to get the weight right was an issue, up and down off the floor all the time etc. Bands have proven to be a lot easier on the body.

To use bands I have to modify the usual strength training regime by keeping a solid eye on heart rate and stopping if I can't stay just about below 60% for a set of 10 reps. I wait for my heart rate to drop to baseline while resting which typically takes 3-5 minutes between each set. Normal weight training is about 30- 60 seconds muscle under tension and then 90 seconds rest. I have had to shorten rep cycles and take much longer rests. I don't think you can safely do this with ME/CFS without a heart rate monitor and knowing where your likely maximum is (don't get me started on 220 - age, quite possibly the most misquoted fitness paper of all time) but if you start mild enough you can likely work out what that point would be anyway, it's not like 60% is a magic switch point. I am mid my Set A right now, I read, write and watch TV in my rest periods and I am not very strict with how long rests are, I am trying to relax and return my heart rate that is the point of the rests. Takes a lot longer than a typical strength training however, you will spend hours doing what a normal weight trainer could do in 20-30 minutes.

My heart rate will gradually climb as I do these exercises and once resting doesn't get me down to a certain point I have to stop or risk PEM. Bands allow you to go easier than weights and are more progressive and mirror the bodies muscle strength profile better than weights. It can be done at home but for ME/CFS sufferers the advantage of just being able to let go and stop exertion that instant is a pretty big plus point if you set a heart rate alarm. The very small variances you can make to the difficulty also make it easier to adjust without needing to constantly adjust the weights like with dumbbells. It is quite practical and since you are stretching a band you can do it standing up or all laying down if you have positional tachycardia, its a lot easier to adjust to something that works since you don't need gravity to make the exercise work.

James Grage is a bodybuilder and the guy I think that started the use of bands like this in a big way, he is the place to look for training regiments and how to do it. His tips and tricks video is a good place to get started with what you need (band type and gloves). The total resistance workout on paddleboard turns out to be a good starting place to learn the first exercises for each area of muscle. He has videos that go into particular areas, chest, arms, back and those are great to watch too especially if you can't do one of the paddleboard exercises with the lightest band you have. He has some (door) anchored variants that can be done with less strength for all the areas he is talking about and while tension all the way through the movement is optimal we are sick people so if it's loose and you peak at contraction point of the muscle you will still gain strength from doing it. He isn't focussed on ME/CFS, the guy is an ex-professional bodybuilder. But it turns out his exercise regime adjusted a bit is quite doable for me at least.

I haven't personally found any energy gains from doing resistance training, but I am stronger and that has helped me just move about and doing various activities. I would say be cautious, do just a few reps just the once to begin with and work very slowly up because the last thing I want to be is remotely responsible for a crash from this. I have crashed from this training before I worked out my limit and it was deeply unpleasant, the worst crash I have had.

 

[Mary]

I haven't, although I use a little pedaling device that looks kind of like it. It's just that my thing mimics an exercise bike instead of an elliptical.

@RebeccaRe - what is the name of the device you're using? Could you provide a link? I'm just starting to use an oxygen concentrator and would like to combine it with some type of exercise device (and there so many to choose from! )

 

[Rebeccare]

@RebeccaRe - what is the name of the device you're using? Could you provide a link?

This is the one I use, and I'm very happy with it!
https://www.amazon.com/Sunny-Health-Fitness-Magnetic-Resistance/dp/B08CSC4T28