Share Your Experience: Types of Exercise That Work With ME / CFS?

[pemone]

The key unifying attribute for ME / CFS as a disease seems to be the post exertional malaise (PEM), which seems to have these characteristics:

* Quick accumulation of either lactic acid or some other byproduct of aerobic exercise in the muscle, which does not clear sometimes for many days after exercise.

* An inability to generate strong muscular contractions after a period of aerobic exercise

Some describe this as a lack of stamina, but stamina to me is a vague word that strongly suggests a lack of cardiovascular fitness. In my own case, this is absolutely NOT the reason for the muscular fatigue. My heart and lungs are ready and willing and able to go on. Something very specific to metabolism inside the muscle just completely fails, and no amount of cardiovascular conditioning will change that. More exercise will in fact make the problem worse.

My question is are there forms of exercise that work well for CFS / ME? In no particular order:

1) I am finding that weight workouts with fewer than eight reps / eight seconds of activity per set, with long rests between sets, can be tolerated. What about others? If you let yourself start getting out of breath and becoming aerobic, there will be hell to pay the next day.

2) I just started yesterday to test the idea of doing swimming sprints, just single laps followed by 1.5 minute rests per lap. This was only partially successful unfortunately. I ended up having some real muscle soreness, but not the same kind of overwhelming fatigue I would experience if I made the workout fully aerobic. So I am calling this an experiment in progress. I may need to increase the length of rests between sets, and it might also be worth experimenting with slowing down the pace of the sprint after eight seconds. (See more below on that.) This is in order to keep the activity out of aerobic / lactate energy use.

3) Is taking a long slow walk recommended? I guess there is no way to keep this from becoming aerobic, even at a slow pace? Any guidelines that can be shared here are appreciated. This one is very tricky, because a 40 minute walk can give you a lot of endorphins and you feel good, but if you are too far into aerobic zone you are producing the conditions that will leave you exhausted that night and the next few days.

In considering the above points, let's use a reference on different types of energy systems:

http://www.brianmac.co.uk/energy.htm

What is important to take out of this reference:

A) We want to stay in the Alactic Energy System. And what is critical here is you get two seconds of ATP storage, and about four to six additional seconds of creatine phosphate use. That gives you eight seconds maximum of activity at high intensity before you start to use aerobic energy.

B) Please note in the Alactic Energy section the documentation about how much time you must wait between sets to get recovery of your creatine stores. That is critical in order to have subsequent sets keep you within the Alactic Energy System.

So I'm very interested in hearing if any of you are managing to find a way to workout in a way that avoids the horrific muscular side effects of this disease.

 

[ahmo]

About 6 months ago I watched a BBC doco by Dr. Michael Mosley. He's done a number of excellent ones, re different diets, how digestion works. In this one he examined different types of exercise regimens, and had lab work to follow his trials of them. One of the things he noted is that he is one of those people who never make good progress physiologically w/ aerobic exercise. I can't remember the details here, but this was my experience earlier in my life. I was able to slog through 3 miles, did 5 miles once or twice, but really, 1.5 was about optimal. I never fared better at swimming, eventually moving into aerobic work-outs and then rebounding.

The thing that worked for him, and reset the way he processed glycogen, is High Intensity Training. You use any form you choose, go as hard and fast as you can for, initially, 30 seconds; recover; repeat for 15 seconds; recover; repeat for 15 seconds. The times go up to 3 minutes. that's all it takes. He demonstrated on a stationery bicycle.

I'd worked up over about a year from 4 minutes bouncing on rebounder to 9 minutes when I encountered this. I've been doing the 30/15/15 since then. I run as hard as I can on the rebounder. And I pump my arms: finally some arm exercise I can do. Sometimes it's 5-6 days in a row. Sometimes not. But the thing is, each experience is the best and most intense I can manage. It's so quick and efficient. I love this method. Presumably over time I'll build up my times. But it doesnt' matter, because I know I'm going as full out as I can each time. I do it first thing in the morning, so I'm never too tired. You can search for this, I know there are some youtube clips.

 

[pemone]

About 6 months ago I watched a BBC doco by Dr. Michael Mosley. He's done a number of excellent ones, re different diets, how digestion works. In this one he examined different types of exercise regimens, and had lab work to follow his trials of them. One of the things he noted is that he is one of those people who never make good progress physiologically w/ aerobic exercise. I can't remember the details here, but this was my experience earlier in my life. I was able to slog through 3 miles, did 5 miles once or twice, but really, 1.5 was about optimal. I never fared better at swimming, eventually moving into aerobic work-outs and then rebounding.

The thing that worked for him, and reset the way he processed glycogen, is High Intensity Training. You use any form you choose, go as hard and fast as you can for, initially, 30 seconds; recover; repeat for 15 seconds; recover; repeat for 15 seconds. The times go up to 3 minutes. that's all it takes. He demonstrated on a stationery bicycle.

I'd worked up over about a year from 4 minutes bouncing on rebounder to 9 minutes when I encountered this. I've been doing the 30/15/15 since then. I run as hard as I can on the rebounder. And I pump my arms: finally some arm exercise I can do. Sometimes it's 5-6 days in a row. Sometimes not. But the thing is, each experience is the best and most intense I can manage. It's so quick and efficient. I love this method. Presumably over time I'll build up my times. But it doesnt' matter, because I know I'm going as full out as I can each time. I do it first thing in the morning, so I'm never too tired. You can search for this, I know there are some youtube clips.

High intensity training is great, and I used to do this with sprints. The problem is CFS makes even this kind of training nearly impossible. Without great precision in timing and great attention to rest-recovery between each set, the exercise becomes aerobic. And 30 minutes of accidental aerobic exercise is enough to lock out my muscles for two days, and in the worst case leave me panting with compensatory respiratory alkalosis, with my body trying to desperately shed all of the acid accumulating in my muscles through deep and rapid respirations.

 

[Valentijn]

@pone - the key aspect to walking or any other activity (not necessarily exercise) is that we keep a close eye on heart rate. Most of us need to keep it under 110 or so, and many can hit that just by sitting up or standing. Hence even a slow walk would be grossly excessive for some.

 

[Artstu]

About 6 months ago I watched a BBC doco by Dr. Michael Mosley. He's done a number of excellent ones, re different diets, how digestion works. In this one he examined different types of exercise regimens, and had lab work to follow his trials of them. One of the things he noted is that he is one of those people who never make good progress physiologically w/ aerobic exercise. I can't remember the details here, but this was my experience earlier in my life. I was able to slog through 3 miles, did 5 miles once or twice, but really, 1.5 was about optimal. I never fared better at swimming, eventually moving into aerobic work-outs and then rebounding.

The thing that worked for him, and reset the way he processed glycogen, is High Intensity Training. You use any form you choose, go as hard and fast as you can for, initially, 30 seconds; recover; repeat for 15 seconds; recover; repeat for 15 seconds. The times go up to 3 minutes. that's all it takes. He demonstrated on a stationery bicycle.

I'd worked up over about a year from 4 minutes bouncing on rebounder to 9 minutes when I encountered this. I've been doing the 30/15/15 since then. I run as hard as I can on the rebounder. And I pump my arms: finally some arm exercise I can do. Sometimes it's 5-6 days in a row. Sometimes not. But the thing is, each experience is the best and most intense I can manage. It's so quick and efficient. I love this method. Presumably over time I'll build up my times. But it doesnt' matter, because I know I'm going as full out as I can each time. I do it first thing in the morning, so I'm never too tired. You can search for this, I know there are some youtube clips.

Here's a link http://www.bbc.co.uk/news/health-17177251 I have a feeling this is only available to those in the UK ? @pone where are you? and are you male or female?

I've found a way to do short high intensity exercise and have found it beneficial.

 

[heapsreal]

I tried many times in different ways to slowly increase aerobic fitness. Never worked.

weight training though was different and could work up to quite heavy weights but not pre cfs levels. Also greatly altered my workouts where I would lift in the 1 to 3 rep range and wouldn't do another set until I had my breath back. I may only do 1 to 3 exercises and only a few sets each and would workout once every 5 to 7 days. A workout could be over within 15mins with a lot of time recovering between sets. If I needed to take a few weeks off I would. Muscle memory helps.

I guess I have learnt through trial and error that if I feel like utter crap than don't push it, but just rest up. Although strange I have worked out how to get stronger without pushing myself too hard. It all seems almost opposite to the advice that's given out to non cfsers.

I think we can increase our boundaries but not in huge amounts and we have to find those boundaries and hover around it without going over it.

 

[pemone]

Here's a link http://www.bbc.co.uk/news/health-17177251 I have a feeling this is only available to those in the UK ? @pone where are you? and are you male or female?

Male in USA

I've found a way to do short high intensity exercise and have found it beneficial.

Well please share the details

 

[Artstu]

This is what I posted in another exercise related thread. It does seem that only Men seem to be able to find a way of exercising to a greater extent.

I have just recommissioned that old MTB and am literally about to go for a ride to see how I fair, it's been eight years since I last ventured out on it.

I started off on a static bike (Old MTB on a turbo trainer) I'd warm up gradually for 5 minutes and then if I still felt OK I'd go quite hard for up to 10 minutes, if I didn't feel OK I'd wind it back down quite quickly, usually though I'd naturally settle at around 80% of max HR, with the odd interval up to 90-95% of max, then 5 mins steady to cool down. I only did this in winter when it was below 14 deg C in my house, at first I'd need a few days to recover. I did this for several winters and my recovery times got shorter, I never did more than 25 minutes on the static bike. I had times when I could do a hard effort day after day without too much trouble. I never managed it at all in the summer.

Last year I bought another electric bike, I'd had one for a short while a few years earlier. I've ridden the bike for just over a year now, with a few months off it in winter when I revert back to walking, I can't walk far in the summer months. I can manage up to two hours on the bike now, I don't wear a HR monitor but know from experience I'm getting to similar heart rates I did on the static bike. I mix the intensity up a lot depending on how I feel, with 5 assistance settings on the bike I have a huge range of variables to play with. Even when I'm quite unwell, where I wouldn't be well enough to go for a walk I can go out on the bike for a gentle tootle, often that tootle will turn out to be a good hard ride.

I'm getting fitter and stronger and faster on the bike. I still get periods where I feel unwell, I still need a lot of sleep and rest, I'm still ill, but not as ill. I've built good muscle in my legs, my resting HR is around 50 bpm, my max is around 190 bpm (I'm a fast beater)

It's taken me 6 years of hard consistent work to get to this point, that's doing something almost every single day even if it was a short 5 minute walk at times. Exposure to cold in the winter has been a big helping factor, my hardest effort and biggest improvements were made in winter, summer was always difficult until I got the electric bike, with that I can now get out in the summer as well.

 

[justy]

Hi - when I was in a remission phase of this illness I could swim daily, do yoga and medium distance walking. Now, since my relapse 6 years ago I am not able to add in any exercise, no matter how much better I am feeling.

On really good weeks I can go for a short walk once a week without any ill effects - on bad weeks/months just walking around the house and showering and cooking is too much. I think we all have our individual limits and it depends also on our lives and how we live.

I have also tried very gentle slow yoga - simple easy poses - perhaps for 3-5 minutes every other day and weirdly this is also too much and results in a worsening of symptoms that can take weeks or months to recover from. I wish I could do yoga as it can be so beneficial - especially for people who cant exercise.

I have a large family and home with land so I need to use any excess energy on looking after my kids and having relationships with family members and some friends. Sometimes I use additional energy for light gardening - but then again that can really only be once a month without long term effects.

Your description of your PEM is also interesting to me, as exercise doesn't cause me ANY muscle soreness (although I sometimes get the muscle burn from walking upstairs or kneeling down - ouch!) my PEM is basically a worsening of ALL symptoms, including neurological and cognitive which can last for days or sometimes weeks.

Exercise such as swimming usually makes me feel good as I am doing it - same with gardening - so I get carried away and think I CAN swim a length or whatever - and my body remembers how to do it and seems to love it - until I stop.

When I stop my heart is pounding. my head is dizzy and I feel like I am going to die unless I rest RIGHT NOW! Then the rest of that day I can feel ok - I tell myself to rest a bit extra. The next day I still feel ok and decide that maybe swimming once a week would be a good idea - just for 10 minutes as I love it so much

. Unfortunately by day 3 -4 AFTER the exercise I wake up feeling like I have been hit by a truck. I feel out of it, my speech is slurred, my legs shake i feel confused, depressed, weepy, every little thing, like lifting my arms up is an enormous effort. I drag myself through the day, but unless I go to bed- usually for 2-5 days I will not recover back to where I was before I went for the swim.

Do other people have this kind of experience with exercise?

 

[heapsreal]

This is what I posted in another exercise related thread. It does seem that only Men seem to be able to find a way of exercising to a greater extent.

I have just recommissioned that old MTB and am literally about to go for a ride to see how I fair, it's been eight years since I last ventured out on it.

I think maybe men are finding ways to exercise as they are more attracted to weight training then females. Weight training I think can be done at a level that avoids constant increases in heart rate and use of aerobic energy systems.

Also easier to measure and calculate how much one can do and or pull up short if feel unwell. Can't do this if u go for a walk and need to get home?? I think the aerobic/cardio work sneaks up on people with delayed fatigue / pem.

Also anaerobic exercise can be broken down further into phosphate and lactate energy systems. I think if one can train in the mostly phosphate zone that they may avoid pem. Phosphate system is what energy system is used for intense activity lasting approx 10secs. After this the lactate system kicks in and is the cause of burning in the muscles.

I trying to recall this from high school PE now I think the phosphate mostly regenerates back close to normal within a few minutes.

This is why when I exercise I try to train within the 1 to 3 rep range and long rest intervals.

I will say this, if ya crook as a dog and or in a crash any exercise is bad for ya.

 

[Artstu]

A quick reality check on my old bike shows that today I'm slower than before I started exercising I'm not in good form currently with it being summer, not that it's particularly warm. It just goes to show how good the e-bike is in allowing me to cycle the way I do, it more than makes up for the reduction in power the illness causes.

It was nice to ride a normal bike, it was my old training bike from before I was ill. So I won't be ditching the e-bike any time soon, if ever.

 

[Mij]

@ahmo I also watched Dr.Mosely's experiments a few months ago. I found it all very interesting, including his "fidget pants" He talked a little about genetics and how this can also affect the outcome.

 

[heapsreal]

i recall reading or watching a show on how much one can increase their fitness levels. At the time i guess there was a notion that if one trained really hard then most could be high level athletes, or something along those lines. Genetics wasnt as bigger part as we thought or was it.

I think the study showed that a person can only increase their aerobic fitness by say 10%(plucking numbers here), so if one started in the bottom 25% of the population in terms of fitness, then they dont have much of a chance of being a high level athlete, but they can still improve and i guess theres other health benefits too.

Also what i do recall was during this study, they had so called healthy control subjects who were sedentary. I remember this researcher was amazed at the ability of one sedentary guy, supposedly healthy, was a smoker, i assume he was in his 20s for age. Apparently this guy blitzed those in the control group he was in and most who were in the before and after fitness study. At first they thought this guy was playing them. Further questioning they found out his sister was an olympic athlete in rowing or some event requiring a super high level of fitness, i think also maybe he had grand parents who were also athletes etc. So this guy didnt need to train to beat most people, for him he had very good genetics to get by on.

I think this type of genetics can also explaining, in part how some of us function better then others with cfs/me. Just like athletes, i think it also depends on our chemist too.

Also if one thinks about it, if u dropped the fitness and function of a top athlete by 50%, that 50% is probably better then the average joe off the street. I did say fitness and function as i do think if top athletes with cfs/me still suffer badly, still get pain, insomnia, brain fog etc. This might also explain why we here of some world class athlete recovering from cfs/me and then working full time etc but i also think that working fulltime for them is probably not even like 50% of a fulltime athletes schedule?? sort of like the accountant fiddling the books?? Im not saying this is a good thing or bad but u would think many athletes would be able to push themselves more and have a high tolerance for pain then most too, so on the outside they may still look like supermen but when they get home they collapse?? i think we have all played that game??

Interesting subject.

 

[Artstu]

Also if one thinks about it, if u dropped the fitness and function of a top athlete by 50%, that 50% is probably better then the average joe off the street.

That's what allows me to do what I do. My ability on the bike is at odds to my actual health, which I'd describe as very poor.

 

[heapsreal]

That's what allows me to do what I do. My ability on the bike is at odds to my actual health, which I'd describe as very poor.

im similar but its lifting weights not cardio. I can have done nothing very physical for months and with a couple of very easy break in workouts bench 100kg, if i could keep something going regular probably 120kg, if i dont crash. pre cfs i could bench 140kg(drug free), so thats about a 30- 40% drop??

Theres was an interesting book written by Alstair Lynch, an australian rules football player who got cfs/me. He had all the best docs at the time at his disposal and they couldnt cure him but the trainers etc devised a plan for him. He was able to play the actual game most weeks which would be almost 2 hrs of constant running involved. He was a very good footballer so got by on his skills i guess. But he didnt do alot of training at all, sometimes none for a few weeks, if he did it was some light ball work, or he mentions how he would do abit of walking. but he was one of the first athletes using ice baths and would get IVs of saline before and after games etc when required etc. Basically he was in cotton wool except for game day for 2hrs. The team he played for won 3 premierships in a row, so he didnt hold his team back, he was actually one of their stars.

So theres alot of different levels of function i guess, suffering is hard to quantify when one just looks at the level of ones function???

 

[Mij]

More on this here:

https://richardwchin.wordpress.com/tag/exercise/

"Some people are super responders (15%) and some non-responders (20% of the public) which is all down to 11 genes that we have. They took some more of Dr Mosely’s blood to see which one he was (but didn’t tell him until the end of the challenge)."

Mosley was less please to discover that his exercise had made absolutely no difference to his aerobic fitness. He is among the 20% of the population are non-responders i.e. their aerobic fitness does not improve with exercise. On the other hand 15% of people are super-responders and their aerobic fitness in response to exercise far exceeds that of most other people. Eleven genes appear to be responsible for individuals aerobic responsiveness and how well different people will respond can be predicted from gene tests. Prof. Timmons revealed that Mosley’s test had predicted that he would be a non-responder. In future science may be able to guide people towards finding the most effective exercise for them as individuals.

They tested his insulin sensitivity and his aerobic fitness and then started him on his challenge which is called the HIT protocol (high intensity protocol). This involves cycling for as hard as you can on an exercycle for 20 seconds followed by a 40 second break and then repeated another two times.
So this equates to one minute of exercise over the three minutes and needs to be done three times per week. Sounds pretty simple!

The idea behind HIT is that it breaks down glycogen stores where the glucose is stored in the muscle turns the glucose and energy from the blood.

This type of exercises activates to 70 to 80% of the muscle instead of the usual 30% with most generic exercise so therefore improves insulin sensitivity. It can also improve the VO2 max in some people but as some people are non-responders it might not have this effect. It usually takes about six weeks to improve fitness.

 

[xchocoholic]

I've tried various exercise regimes in the last 8 years but keep having to stop due to crashing (or was that an infection / uti ?). I can push past pem, or rather ignore it, for a few days and continue to push myself but I'm no where near my mental capacity if I'm rested.

I found that I can increase my weights and reps just as easily now as I did prior to cfs. But crashing keeps me from making any real progress in a structured exercise regime.

I've gained strength in the last few years tho. Back prior to 2006, I used to have to roll out of bed because my abdomen and neck muscles were too weak to support me. I can do this easily now tho. My weight has most always been 120-135.

Walking was a challenge at first too post gluten ataxia recovery, sept 2006, but now those muscles are working properly. My balance is off from some residual ataxia but that's not from weak muscles. My arms and legs haven't felt heavy or suddenly weak since 9/2006.

Nowadays I feel good from taking 20 - 30 minute walks. IF I don't have pem or an infection. I change my pace from slow to moderate and back based on my hr and breathing. It's subconscious but I'm aware that I do this. My natural tendency is to push myself when exercising so my body has to remind me that's not an option.

I don't see anyway to correctly analyze exercise for pwcs without taking into account those who have neurological or orthostatic problems.

Tc .. x

 

[Mij]

@xchocoholic how do you push past or ignore PEM?

 

[xchocoholic]

@xchocoholic how do you push past or ignore PEM?

Recently I've been using both caffeine pills (Leader brand) and vitamin water xxx. I'm not all there mentally tho. I find myself getting easily irritated with people. But I am getting out of my apt.

I still get pem but it doesn't mean I'll spend 2-3 days on the couch like I used to if I use the above. That's why I said I was pushing past pem.

I only use about 1/4-1/3 of a caffeine tablet at a time and only in the morning. I was drinking 1-2 xxx daily but recently backed off to 1/4-1/2 a daily due to insomnia.

Just a word of caution ... Imho, not everyone with cfs should try this. But after 8 years of healing, 8 gf including 5 paleo, + adequate sleep, my body has healed to the point where I'm ready to push my limits. Kow.

I've been healthy at rest since 2008. I've seen both Myhill and Cheney refer to these as markers that it was ok to push.

Imho, gluten intolerance, including celiac disease, was my biggest obstacle.

I have no idea where pushing my body may lead me but I have to try it. This time I pushed for about 2 months without crashing. I know to stay on top or ahead of infections (kidney stones) this time.

Tc .. x

 

[Mij]

I may have misunderstood your previous post where you say you pushed past PEM by meaning you no longer crash, but ignoring it? I don't think that's possible based on my own experiences.