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

xchocoholic

Senior Member
Messages
2,947
Location
Florida
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.

I can see why saying "pushing past" could be misunderstood. It makes sense in my head. Lol.

I wish I'd known about caffeine pills back in 2008. My energy level is so much better. Caffeine drinks have never worked this way for me.

It would be great if I were mentally sharp but I'm having trouble getting provigil. So far the supplements and dietary changes I made didn't work for this. Not that I tried every supplement available but I tried most of the ones listed as brain enhancers.

I'm unclear still on what roll the caffeine pill has on my OI. I've been told that my hr is irregular lately but I don't know if that's new. I'll let y'all know if I kick the bucket. Lol.

Hope you find something that works for you. Tc .. x
 
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Mij

Messages
2,353
I can see why saying "pushing past" could be misunderstood. It makes sense in my head. Lol.

I wish I'd known about caffeine pills back in 2008. My energy level is so much better. Caffeine drinks have never worked this way for me.

It would be great if I were mentally sharp but I'm having trouble getting provigil. So far the supplements and dietary changes I made didn't work for this. Not that I tried every supplement available but I tried most of the ones listed as brain enhancers.

I'm unclear still on what roll the caffeine pill has on my OI. I've been told that my hr is irregular lately but I don't know if that's new. I'll let y'all know if I kick the bucket. Lol.

Hope you find something that works for you. Tc .. x

I'm ok with just a small amount of coffee every other day. It may help with OI in small amounts as long as it doesn't crash the adrenals, which is the problem I have drinking a normal size mug. There is an herb in Ayudevic medicine combined with coffee that helps with mental clarity. Just a short time ago someone posted it but I think it was deleted because he was promoting his business. Darn I don't remember the name of the herb but the caffiene apparantly increases it's transport into the brain.
 

SOC

Senior Member
Messages
7,849
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.
PEM certainly isn't ignorable in my experience. Yes, if I do a little more than usual and have a little fatigue and muscle aches as a result, that's ignorable, but I don't consider that PEM. PEM (like I have right now, unfortunately) is entirely different and impossible to ignore. Continuing normal activities through PEM only makes it worse, last longer, and prevents return to my pre-PEM condition.

I have used caffeine, rarely, to get through a short (maybe 2 hrs) event, but the consequence is high. Afterwards, I feel even worse and my PEM is extended by days, if not weeks.
 

Mij

Messages
2,353
@SOC It is totally impossible for me to ignore too. I can't even try, everything stops and I'm horizontal until it passes.

Did you have problems with coffee pre ME? I did.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hmmm. Maybe I should've phrased this differently.

How about "Taking caffeine pills minimizes my pem to the point where I'm not asleep on the couch all day and I don't feel uncoordinated. "

Previously those were my pem symptoms. Day one would be a total waste. Eat then sleep. Repeat till bedtime. Day 2 would mean less sleeping but still couldn't get out. Day 3 would be iffy as far as whether I could get out.

I'm not thinking as clearly as I do when I'm rested but my goal is to be productive and stay off the couch. So I minimized my pem.

Caffeine in pill form is working totally different for me than caffeine in coffee, tea or chocolate.

For example, I was out running errands yesterday which normally would've caused 2-3 days of pem. Today I felt tired and uncoordinated until I took caffeine.

Within 30 minutes, I went for a 30 minute walk. Followed by eating lunch. Went and laid out the the pool for an hour.

Came home, ate again and laid out for another 30 minutes. Then started working on a plant project I started a few weeks ago. I'm wicking 6 planters with cotton strands that I got from cutting up an old washcloth. I'll add plant fabric, dirt and plants next. I'm not struggling thinking this thru at all.

I'm laying down again now due to OI but I'm not tired or sleepy.
As soon as my OI / hypoperfusion clears I'll be back up working on my plants.

Please bear with me. This is new for me so I'm working on how to explain it. This is typical of what I did from Feb till April this year until I got a uti that I thought was a cfs crash. All this is new.

Tc .. x
 
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ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
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.
My success with my HIT program seems, then, to indicate how much progress I've made since implementing my methylation pathway remediation, particularly Freddd's Protocol. I am extremely grateful.:):balloons:
 

pemone

Senior Member
Messages
448
@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.

For an "average" person, how much of the walking activity is aerobic when pulse is at 110 or lower?
 

pemone

Senior Member
Messages
448
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.

Hi Artstu, when you were at your worst with CFS, what specific symptoms did you have after this kind of exercise?

The exercise you describe is strongly aerobic, with occasional spurts of anaerobic, and there is no way someone with fully developed CFS could do that. That would lead to punishing muscle fatigue, acid burning, general weakness, mental fog, etc, sometimes for days after the exercise.
 

pemone

Senior Member
Messages
448
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?

It's interesting that you don't feel the muscle weakness but instead just get the neurological part. Do you have high inflammation markers like hscrp and homocysteine? It almost makes me wonder if what you are experiencing is CFS.

Part of exercise is to produce inflammation in muscles you stress. It is the repair of that inflammation that makes you stronger. Maybe in your case the inflammation in muscles is starting some cascade of other inflammatory events that end up cause some neurological inflammation or side effect?

I definitely have the delayed reactions you refer to. Typically for me after exercise day one involves the muscle burn, and day two involves general sense of malaise, problems sleeping, problems breathing (forced deep respiration to get rid of acid from the blood). I'm getting better at not doing the things that would extend me out to three days.
 

pemone

Senior Member
Messages
448
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.

Remember the person is still peddling in an aerobic range during the 40 second breaks....

This exercise is highly aerobic and would be crushing to someone with fully developed CFS.

What might work for someone with CFS is an eight second all-out sprint, followed by a two minute stationery rest. Difficult to make that interesting on a bike.
 

Mij

Messages
2,353
@pone I understand what you are saying. The exercise test is geared towards the normal population. I was more interested in the genetic profile, if whether there are differences in exercise results in an improved CFS patient with a genetic "responder" profile vs a "non responder" profile CFS patient. Would be interesting to know if it affects the outcome.
 

SOC

Senior Member
Messages
7,849
@SOC It is totally impossible for me to ignore too. I can't even try, everything stops and I'm horizontal until it passes.

Did you have problems with coffee pre ME? I did.
I never drank coffee. It never appealed to me. I did drink some caffeinated soft drinks pre-ME so I could manage some caffeine. Even now, I can drink the occasional caffeinated soft drink when I'm not in PEM. But I can't use it to increase my activity without paying with PEM. PEM is not affected by caffeine (for me).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.

Great post

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.

I probably would find that a good way to exercise too if I felt up to adding exercise in the mix of what Im already doing. Any sustained weight hold, the object doesnt even have to be heavy! gives me not just arm burn out (fatigue in arms) but also pain in my muscles/wrists or whatever, so short weight lifting with minimum reps probably would be one way I could exercise. I havent experiemented with that to know what about of reps I could do but I know I cant do clothes scrubbing reps for more then about 40 seconds if that without having to stop and rest.

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.

I have experiemented with swimming in the past thinking that I may be able to do that, but that experiment just showed me that swimming is bad for me too.
Treading water gets my heart rate up too much.. even with the boucany of my body, its too much to do that for a 2-3 minutes.

Swimming a quick lap and then resting before doing it again... well after a short time it catches up on me even if Im resting minutes between laps. I experiemented too with longer rest times but it still didnt help.. there is only so many laps I can do (with rest in between).. just a few.. and then I cant do more as I feel quite ill (malaised)

I used to compete in swimming before I got sick but with the ME/CFS Im now like a whale in the water! its crazy what skills one can loose with this illness, I now have no natural swimming grace and it takes me nearly twice as long to swim a lap). A 50metre (standard pool) length swim without a break is bad for me (maybe if I tried 25metre laps with several minutes in between, maybe that would work better??). I only managed about 4 laps too (with rest in between).. its all very sad when I used to easily swim 80 50 metres laps and do that without a break, swimming was effortless to me before I got ill. When healthy it used to be no harder for me then walking was... swimming 50metres is now a major workout.

Anyway.. After experimenting with swimming as a ME/CFS exercise (cause some ME/CFS specialists suggest swimming for us) I had to give up that idea.

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.

Slow walking is bad for me due to the OI/POTS. If Im on my feet and walking a short distance, I try to do it fast as that is better thing thou once my heart rate is up or I start to get warm at all, its bad if I try to maintain that up.

When i was able to exercise with the ME. I used to do a walk/run cycle to exercise (at night when cold). 30-40 seconds run then a slow walk for 1- 1.5 mins to allow heart rate to calm and then run again and continue in that manner. This way I guess i was stopping myself from keeping my heart rate around certain level. not keeping it high for too long. I could do that for 2 hrs .. but irronically standing still.. I couldnt do and was collapsing a heap at supermarket checkouts after about 1 min.

the slow walking after the 30-45 second run.. would also allow my muscles time to recover from this weird burn out they did after those seconds time periods of running (where I could hardly move them, weighted limbs feeling like bricks on feet and would also get pain in my legs). I think my mito wasnt producing enough energy or something once what was there was used, so I had to then go slow and allow some energy to build up again???

2-3 mths of that and I couldnt even really run for longer periods (around 5 seconds longer.. it was nearly a nil improvement after months), I didnt build up stamina to run longer at all.

Anyway I think heart rate and mitochrondia play a huge part in importance when it comes to the exercise issues we have.

As far as exercise goes, I think the only way for us to exercise is with weights using a very low amount repetitions.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.:balloons:

I personally would never try to exercise in the morning as then after that session you then have all your daily activities on top.. hence I used to exercise at night when I'd know how my body was and had been and so it would afterwards get a good rest (sleep).

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 techique you mentioned is basically just what I was doing with just a little more high intensity time. Unfortunately in my case it didnt help any with no real benefit to it and I couldnt really progress in longer high intensity after months of doing it. So I guess this means if glycogen is my issue it didnt help it in my case. Best luck with having success with that method.
 

WillowJ

คภภเє ɠรค๓թєl
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4,940
Location
WA, USA
when I was in remission I was able to do exercise in careful amounts (I rested every 10 minutes or something like that, though by this means I could keep it up for a while).

Like Heaps, I cannot build endurance or cause anything to get better with exercise (except maybe loosen tight muscles, but that's temporary: I can't fix anything long-lasting).
However I can cause a deterioration and I have done this several times. I like to be active and that feels natural and good to me, except now i feel rotten really fast so I learned not to do that, and I learned more lately to walk really slow so I can breathe. Breathing is a little bit important, I think. :)

at this point I struggle with the most basic activities of daily living, like heating food, so it would be pretty pointless to try to exercise because then I wouldn't be able to eat. ;)

however I always make a point of keeping as much motion as I can, even if that just means removing myself from my bed to an easy chair and getting up once in a while to do "little" things like get something to drink or close the curtains.

At other times this has allowed a short walk outside, very light housework, etc.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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??

Turns out I have that athlete gene on my 20andME results (its one of the ones they used to report on), I expected I would have it due to how I was and how family members are (a couple of them were almost selected for olympic team and another played league football.. many family members in state teams) and it turned out I did have it.

Maybe you are a little right there with that, when I was in ME remission, I went and did a 100km run (Trailblazers) on no training for it at all. (I must say that was extremely stupid thing to do as all my team members trained for many months.. I only made 90km cause I got a bad groin injury during it where I could hardly raise my legs and also ended up with hypothermia when I continued on like that.. ambulance people stopped me after I collapsed due to hypothermia.. told me I'd die if I continued without them treating me).

Its food for thought.. maybe that gene helped me get into that ME remission? but on the other hand, maybe a gene like this could work against a person as athletes really know how to push themselves very hard! and are very strong in the mind and dont give up (will run throu pain just like I kept doing once I injured myself during the marathon) so maybe those with this gene could also do themselves more damage due to this kind of strength. I can easily push myself till I completely collapse. I was completely bedridden for 9mths after pushing myself too hard early years of illness, before I knew not to do that.

So yeah I agree that having a gene like this may be working both ways. Did anyone else here have that athlete gene? which all the olympic athletics have one or two copies of? Id like to know if this group of us are more likely to have a remission as I did? Maybe I should try to set up a poll one time to compare remission(s) in the ones with this gene to the ones who dont have it. Having ME/CFS and its degree is probably more noticable in degree to an athlete then someone who has a easy desk job who may not be pushing.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.

Thanks greatly for sharing that as I'd always wondered about him and had assumed he couldnt have had ME as who could do intensive training with this illness. All that makes a lot of sense thou.

I think that may be why I didnt train for a marathon I did while I was in remission.. maybe I was scared the training would bring it back.. so I just went into the marathon without training (and that marathon didnt harm me at all.. no ME payback or did it bring it back).
 

SOC

Senior Member
Messages
7,849
This whole athlete gene thing is interesting. I was a gymnast and a sprinter, but no matter how hard I trained -- and I trained A LOT -- I was never able to develop the stamina necessary for any kind of distance running. This might explain that. @taniaaust1, what gene is that? I'd love to look it up in my 23andme results.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.

I havent heard that before, thanks interesting. Im not sure thou if that suits all of us. If I havent done too much, Im basically healthy at rest (well layin rest due to OI sitting can be a strain on me) other then my memory issues which are always there and some IBS-C which is always there to various degrees.

I doubt very very much thou with even being healthy at rest that I could push, I know I still crash very severely when I push.
 

pemone

Senior Member
Messages
448
Great post

It's good to be loved, thanks. :)


I probably would find that a good way to exercise too if I felt up to adding exercise in the mix of what Im already doing. Any sustained weight hold, the object doesnt even have to be heavy! gives me not just arm burn out (fatigue in arms) but also pain in my muscles/wrists or whatever, so short weight lifting with minimum reps probably would be one way I could exercise. I havent experiemented with that to know what about of reps I could do but I know I cant do clothes scrubbing reps for more then about 40 seconds if that without having to stop and rest.

I have a similar story. I carried in eight heavy water bottles from the front door to the kitchen, and in total this created about two minutes of continuous activity. That alone was enough to set off muscle burn in the arms for two days, and it even gave me some abnormal breathing. Yet a weight workout where I observe short durations and long recovery periods seems to be tolerated.

I have experiemented with swimming in the past thinking that I may be able to do that, but that experiment just showed me that swimming is bad for me too.
Treading water gets my heart rate up too much.. even with the boucany of my body, its too much to do that for a 2-3 minutes.

Swimming a quick lap and then resting before doing it again... well after a short time it catches up on me even if Im resting minutes between laps. I experiemented too with longer rest times but it still didnt help.. there is only so many laps I can do (with rest in between).. just a few.. and then I cant do more as I feel quite ill (malaised)

I used to compete in swimming before I got sick but with the ME/CFS Im now like a whale in the water! its crazy what skills one can loose with this illness, I now have no natural swimming grace and it takes me nearly twice as long to swim a lap). A 50metre (standard pool) length swim without a break is bad for me (maybe if I tried 25metre laps with several minutes in between, maybe that would work better??). I only managed about 4 laps too (with rest in between).. its all very sad when I used to easily swim 80 50 metres laps and do that without a break, swimming was effortless to me before I got ill. When healthy it used to be no harder for me then walking was... swimming 50metres is now a major workout.

Anyway.. After experimenting with swimming as a ME/CFS exercise (cause some ME/CFS specialists suggest swimming for us) I had to give up that idea.

So far my swimming experiment was a fail. But it takes me about 12 seconds to swim the length of the pool at a sprint. I didn't have profound negative reactions, but the next day the muscle was sore and I didn't feel well or refreshed as exercise should make you feel. And the day after that I could not sleep and had a bad neurological impact.

I think I will attempt another experiment where I sprint for six seconds, and then I simply go into an ultra-slow gentle stroke to get the length completed.