has anyone really benefited ie cured by exercise?

[Sushi]

@stridor wrote:

Those who have reached a point in their recovery when they can take on some activity are saying that they feel improvement in their symptoms (fatigue and brain-fog for me)...

I am one who doesn't really fit this model--if I am understanding you correctly.

I am now able to do some exercise, (I didn't work up to it by slowly increasing my activity limits--I am able to do this because of treating some of the causal factors in my illness) but I don't feel any improvement in any ME symptoms. I only notice that my muscles are stronger.

Well, a footnote to that: another related improvement: exercising leg muscles seems to bring an improvement in OI for a day or two. I believe that is because the activated muscles are engorged with blood and act like pressure garments to push blood back up to the head and heart.

Sushi

 

[stridor]

@Sushi
I can not "double-blind" myself. I made big gains when I pushed mB12 into the "many mg" range. It is entirely possible that I was going to have improvements with or without exercise. I can not know the answer to this. I am just encouraging people to keep an open mind.
And congrats on being able to do anything with OI. I was so sick when I was in the throws of that symptom. brad

 

[WillowJ]

High intensity short duration effort does something that low intensity exercise just doesn't do.

true, that. In my case, it makes me sicker. And more dizzy, big red flag there. I might even see stars or start to black out, with just one fast motion or lifting one "heavy" thing or reaching high once.

I'm all for keeping as much movement as is reasonable (i.e. in balance with the need to not make oneself worse), but for me this means very little and typically quite slow.

I've tried a lot of approaches over the years, and this (little and slow) is the only one that I think doesn't make me worse.

 

[WillowJ]

I still believe that is true. That has been the key breakthrough for me. I started off with short sessions on a static bicycle, it was hit and miss at first, with lots of recovery time required. High intensity short duration effort does something that low intensity exercise just doesn't do.

I am happy you can do this, truly. I do worry about any statement that something worked for one person so it should work for others, and this is especially true when it's something the majority of people around here say makes them more ill.

Still everyone is different. I don't want you or anyone to feel ganged up on. You are welcome to your story. And it's good you are doing better for whatever reason.

 

[Artstu]

Thanks Willow I just want to share my experience with everyone, if it works for me it could work for other sufferers. I do realise that some people will not be capable of ever working their heart so highly. But for those that can they may find a similar improvement. only you yourself will know if it's something you feel capable of doing.

 

[acrosstheveil]

i used to go on long backpacking trips and mountain bike all the time even while I sick and now that I have improved and I am still unable to tolerate it well at all. I would always crash heavily for at least a week after one of my outings and that has not changed at all. My symptoms have gotten somewhat better these days but exercise still makes me crash...hard. A long day at work will also make me crash pretty hard...


trust me, i wish I could do these things and I have no problem pushing myself but it just makes me SICKER...plain and simple. I have to conserve my energy with this disease or else I go downhill fast.

 

[Mij]

I still believe that is true. That has been the key breakthrough for me. I started off with short sessions on a static bicycle, it was hit and miss at first, with lots of recovery time required. High intensity short duration effort does something that low intensity exercise just doesn't do.

What does high intensity do for you for that low doesn't? I'm curious.

 

[Artstu]

What does high intensity do for you for that low doesn't? I'm curious.

Overall it gives me more energy for daily living, I seem to slip back to having very little energy when I don't manage to get out. I can feel really rather flat and unwell when I drag myself out on the bike sometimes, after a short while cycling I become energised and can start to put some serious effort in. I'll be tired from the effort, but somehow less tired than if I'd not been out.

If I went out for a slow walk whilst feeling flat I'd just end up getting more and more weary and not get the boost in energy the higher intensity effort gives me.

 

[Mij]

@Artstu ok. I'm trying to understand what you are communicating. How long are you on your bike? Around 14ys ago I used to be able to jog for 25-30 minutes, I used to be a runner when I was healthy.. I preferred the high intensity over brisk walks(which is what I do now) because it gave me a shot of energy physically and mentally, but over time it was actually making me worse. I can't seem to build muscle anymore, I"m just trying to keep what I have. So you're feeling tired after being on the bike? No PEM?

 

[Artstu]

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.

 

[lansbergen]

Last year I bought another electric bike

??????????

 

[Artstu]

??????????

you'll have to expand on that please?

electric bike https://www.google.co.uk/search?q=e...O4KqOV7AbUkoCQDw&ved=0CHMQsAQ&biw=683&bih=342

 

[Mij]

2 hours on the bike?! You're not wearing a HR monitor so I'm assuming you are able to perform this exercise with no PEM the next day? The thing for me is that I can do the exercise with no problems on cooler days like yourself, I could even jog if I wanted on cold days when I feel good. I feel ok whilst I'm doing the exercise, BUT the next day and day after is where PEM sets in and I just want to die. I did not experience PEM when I first started aerobic exericse, I just felt unwell the next day and knew I had to stay in a horizontal position for the day. Over time the PEM grew worse which told me I was making myself worse long term.

 

[Artstu]

The worst my PEM gets is as today, I've had 12 hours sleep and spent the day on the sofa so far, I'd like a bath, but haven't as yet felt well enough to have one.

I could never run, perhaps you need to try some gentle assisted cycling that allows a slow build up to exercising at a higher intensity?

 

[lansbergen]

you'll have to expand on that please?

electric bike https://www.google.co.uk/search?q=electric bike&tbm=isch&tbo=u&source=univ&sa=X&ei=WWl7U7O4KqOV7AbUkoCQDw&ved=0CHMQsAQ&biw=683&bih=342

I know what an electric bike is but i do not see how that can be intense exercise

 

[Artstu]

I know what an electric bike is but i do not see how that can be intense exercise

Sadly you clearly do not fully understand electric bicycles.

 

[golden]

Thats interesting - i cant run or bounce on a mini trampoline - i also recently did two head stands which was a mistake. Its moving my head thats the problem and possibly being upside down wgere my heart was pounding all of a sudden caused the pem.

I wish i could understand whats going on here.

I got a HR monitor. with feet up my resting hr is between 70-85.

This will jump from 100-120 when standing - no matter how slowly i get up.

The idea is i keep below 109 but when it was hot i was already at 107 plus walking about.

Now, on my bike, cycling i was 85-90 - i have recently been ok enough to do occasional hill and at most it goes to 130.

The thing is - when bending down to chsnge the dogs water my HR goes to 120.

So my heart isnt doing much more and even less cycling than when i am walking about and bending down.

I chose cycling as i coukd sit and do it.

In winter i had to wear three coats yo be able to tolerate the cold on top of my body temperature drop. The outer coat is like one of those sleepung bags.

I hsvent fell off my bike in ages. But it doesnt give me any energy generally. It doesnt mske me feel energised.

Sometimes i have to spends some days couch bound, some months a week needs to be spent doing nothing before my period,

years ago after a yoga session i was in bed for three weeks - sometimes i can 'exercise' sometimes i cant - there is no graded imptovement but haphazard pot luck.

I havent explained all the ins and out becsuse i dont understand what is happening. I get fever, chills and inflammation etc. Too .

When i was having baths i was taking one large pan of boiling water to my bath (down one hall on same floor) resting and waiting for the next pan. This seemed helpful.

However presently i feel like exercise is helping me and harming me.

I get very ill if i 'exercise' out of breath - i woukd never do this.

 

[Mij]

The worst my PEM gets is as today, I've had 12 hours sleep and spent the day on the sofa so far, I'd like a bath, but haven't as yet felt well enough to have one.

I could never run, perhaps you need to try some gentle assisted cycling that allows a slow build up to exercising at a higher intensity?

I don't run anymore, not since 11yrs. My equilibrium is poor so cycling is out and it would be distracting for me. I can not handle high intensity or resistance type exercise except for light upper body weights. I enjoy power walking, weight bearing pressure is good for my bones.

 

[jann1033]

@stridor wrote:



I

muscles are engorged with blood and act like pressure garments to push blood back up to the head and heart.

Sushi

Hmm a little ot but just thought I wear a compression stocking on rt leg for av malformation and 90% if my tremors on on the left leg, could be correlations (?)
@golden early on in my CFS "career"during a good time took the kids to an amusement park. Always loved corkscrew roller coasters. Went on one and immediately after got off ride, drunk walking etc that didn't clear up for weeks. Had to be the inversion as had gone on other rides fine without ill effect. Weird.

 

[jann1033]

The worst my PEM gets is as today, I've had 12 hours sleep and spent the day on the sofa so far, I'd like a bath, but haven't as yet felt well enough to have one.

I could never run, perhaps you need to try some gentle assisted cycling that allows a slow build up to exercising at a higher intensity?

Curious as to what caused your pem if not exercise? Also how long were you sick when you started your exercise? What state were you in at the time.? I saw your profile said you got sick in 2006, and I think you said somewhere you built up over a number of years time?