has anyone really benefited ie cured by exercise?

[Artstu]

I have resisted using even a can for 26 yes. Recently the pain from my arthritis forced me to start( and get a handicap placard). I am so much less tired I'm shocked.
CFS fatigue doesn't equal a lack of willpower, it equals a lack if adequate energy production. Wish I hadn't been so pigheaded yrs ago. Why not live a fuller life.
Obviously its not a cure but it made the difference of going to the fruit market vs not

A lot of us can relate to that. I was the same with electric bikes, and some will like what I'm about to say. My encouraging friend kept telling I didn't need an electric bike and an ordinary bike was fine. I too hoped I could improve on the ordinary bike, but I was put off by how ill it kept making me feel. The cost of the electric bike was also putting me off, more than my car cost me to buy.

I resisted for a couple of years, then suddenly my friend changed tack and said buy one, I was still resisting on price grounds, when I finally got one it was like magic, why oh why hadn't I got one sooner.

I'm mobile enough to not require a mobility scooter, I feel it could have been detrimental to my walking ability. However if I had never progressed to being able to walk at least a mile I would probably have bought one. Yes I'm very stubborn and masochistic, always have been, always will be.

 

[jann1033]

the thread is not about folk, with me/cfs, who have benefitted from exercise but whether or not that's even possible.

Actually it was about if anyone had benefited, cured, recovered, via exercise. I think(Lol to long ago to know for sure) I wondered since i saw a facebook page for me/cfs exerciser.

 

[jann1033]

A lot of us can relate to that. I was the same with electric bikes, and some will like what I'm about to say. My encouraging friend kept telling I didn't need an electric bike and an ordinary bike was fine. I too hoped I could improve on the ordinary bike, but I was put off by how ill it kept making me feel. The cost of the electric bike was also putting me off, more than my car cost me to buy.

I resisted for a couple of years, then suddenly my friend changed tack and said buy one, I was still resisting on price grounds, when I finally got one it was like magic, why oh why hadn't I got one sooner.

I'm mobile enough to not require a mobility scooter, I feel it could have been detrimental to my walking ability. However if I had never progressed to being able to walk at least a mile I would probably have bought one. Yes I'm very stubborn and masochistic, always have been, always will be.

Were you exercising before the bike?

 

[Artstu]

Were you exercising before the bike?

Yes.

 

[manna]

Actually it was about if anyone had benefited, cured, recovered, via exercise. I think(Lol to long ago to know for sure) I wondered since i saw a facebook page for me/cfs exerciser.

just saw the first post...for the first time! always handy to read the OP eh i was going on title and feel of thread...but then you are kind of implying that benefit is probably not possible by saying folk who say they've benefitted could be trolls. but im probably splitting hairs..and its your thread so you know its intent
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i believe some think its helping them. i have done before. its all so ambiguous. i can accomplish more exercise when im worse and can get weaker the closer i am to actual recovery. i was definitely easier to treat when i feel worse. i could do tai chi when i was feeling weaker (i was actually stronger and my body was fighting) now i feel stronger, i can't....because im actually weaker but being ungrounded traps energy in me instead of flowing through me, like it does in health when your healthy.

looking at a couple of local bi-polar folk, or something like that, and they walk and they walk and they walk and the look of determination on their face and the more they walk the less grounded they become, so the more energy gets trapped inside that they walk further to get that energy out but its the walking that is necessitating walking. i underrstand it but i don't think i can explain it well at the mo

 

[jann1033]

just saw the first post...for the first time! always handy to read the OP eh i was going on title and feel of thread...but then you are kind of implying that benefit is probably not possible by saying folk who say they've benefitted could be trolls. but im probably splitting hairs..and its your thread so you know its intent
----
i believe some think its helping them. i have done before. its all so ambiguous. i can accomplish more exercise when im worse and can get weaker the closer i am to actual recovery. i was definitely easier to treat when i feel worse. i could do tai chi when i was feeling weaker (i was actually stronger and my body was fighting) now i feel stronger, i can't....because im actually weaker but being ungrounded traps energy in me instead of flowing through me, like it does in health when your healthy.

looking at a couple of local bi-polar folk, or something like that, and they walk and they walk and they walk and the look of determination on their face and the more they walk the less grounded they become, so the more energy gets trapped inside that they walk further to get that energy out but its the walking that is necessitating walking. i underrstand it but i don't think i can explain it well at the mo

No I didn't think it was possible for it to help, just given my own experience. Now that I have made myself as clear as dirt Lol!
I am

 

[rosie26]

I think if there were benefit in exercise, we would all be long well by now.

 

[taniaaust1]

I think a lot of people may even try a exercise route before they even see a doctor and get diagnosed with ME/CFS due to thoughts of "maybe Im getting tired and sore and achey very easily cause Ive allowed myself to get unfit"? or whatever. I took me a lot before I could even accept I was actually very sick. (I was in bed for a week many times during a year before I was willing to accept I really had more just just some bouts of viruses as what I'd thought at first).

I think people look at things to try to boost health when they first get sick. Try to exercise, eat better etc etc.

 

[jann1033]

I think a lot of people may even try a exercise route before they even see a doctor and get diagnosed with ME/CFS due to thoughts of "maybe Im getting tired and sore and achey very easily cause Ive allowed myself to get unfit"? or whatever. I took me a lot before I could even accept I was actually very sick. (I was in bed for a week many times during a year before I was willing to accept I really had more just just some bouts of viruses as what I'd thought at first).

I think people look at things to try to boost health when they first get sick. Try to exercise, eat better etc etc.

Yes, totally agree, once I got over the initial bedridden phase it took me 10 years to get it thru my head this is not like any illness I can just push my way thru and eventually get a second wind and be fine. Slow learner, obviously, but that was my normal way of doing things pre CFS and old habits die hard. Actually they aren't dead since I still make the same mistake just before I flare now Lol! Note to self..overexertion = bad times ahead;-0

 

[manna]

Yes, totally agree, once I got over the initial bedridden phase it took me 10 years to get it thru my head this is not like any illness I can just push my way thru and eventually get a second wind and be fine.

"initial bed ridden stage" is similar to hearing "its gets a little better with time". a common experience it would seem. im of the thinking that the bed ridden stage is the place its easiest to heal from as your body is still fighting and feeling urgggh...which unfortunately is followed by the no, or less, fight stage from the body and with this, a state of mild/moderate/serious physiological panic. easier in some ways but harder to heal.

and its surprising how long it takes to realise that exercise is counterproductive even when it can be, by degree, accomplished. kind of important then to share that expoerience with others so as to save them the time finding out. i would still say that movement, when possible, is helpfull, but not odf the aerobic exertive kind. polarity yoga is very quick and simple and limbers you up nicely ime.

all in all, though, not exercising will most likely not heal you but at least you have a pre-requisite in place should that become possible. pre-requisites, like diet, imo, are important even if they don't provide the means to be completely cured, at least they put you in partly the right place to move forward. diet, therapy etc all become pointless if i exercise because i won't improve till i stop exerting myself.

what i do know is that i can heal me/cfs without aerobic exercise and so i feel that would follow for all illnesses--cfs if you distinguish. my near recoveries were from a bedbound state till the last week. so less fatigue and fog could mean you're worse, thats my experience. probably due, in part, to a completely sideways colon.

 

[jann1033]

Originally (1988) I was told it lasts 5 years. I think what they didn't see then was the changes it goes thru over the years. I know personally while I still occasionally get all the symptoms I've had, some of the initial IE sore throat, flu like are not my predominant ones anymore. I wonder if some mistake those changes as "recovery" or improvement when its just a change in the disease process. Kind of like MS, you can have it that you never go into remission or attacks decades apart but you still have it, either way.

 

[Mij]

I would agree for me that it definitely changed over time. Also, from my own experience and from what an ME doc told me 20yrs ago is that, if you have a severe relapse (like I did after taking immune modulators), you will never go back to base or previous improvements. My illness took a whole different path after that, I developed OI, and although I've improved, I still can not move past the improvements I made 7yrs ago.

@jann1033 I was told 5yrs as well by an internist who now believes it doesn't exists. I guess he figured if you are not well after 5yrs then it must be in your head. whatever.

 

[manna]

2 years is what ive heard, in that most "improve" after that, to some degree. though its actually a worsening in my experience. it took more to improve after i passed the bedridden stage and have always noted its return as a good sign. certainly therapeutic devices work much better when i feel worse. note that i would feel worse if i ate wheat but that would not be a "good" worse, if that makes sense

definitely a change in the disease process, at leat, and not improvement. (after 2-5 years of illness and sometimes feeling more active). if your colon digresses to crohns style you'll seem to have more energy imo.

i completely believe that you can return to pre-crash states, for myself at least, but it'll be necessary to tweak, increase or decrease the therapies you're doing. it takes an enormous amount of energy just to be alive, what with the heart beating, pumping etc..so its just a case of redirecting thaty energy correctly...not always easy but if your hearts beating, i think most things can be resolved.

 

[SDSue]

When it comes to exercise, fear and respect of this disease rule my journey. For ten years, every time I got a little better, I launched into an exercise program, convinced that I could rebuild my mitochondria and "get in shape". Repeatedly I tried, but was unable to increase my fitness level and continued downhill.

I am currently able to live alone, expending energy on vital tasks of self-care on most days. Any further worsening of my condition and I will no longer be able to do even that.

Having been a competitive athlete and an avid runner most of my life, I am envious of those who can exercise their way back to health. But for those fortunate individuals to insinuate that there is something lazy about me is nothing but ignorance and pride.

The sheer will and courage that most of us exhibit just to get through the day is beyond anything I ever experienced during my competitive sporting days. I continued to show up at work in a condition far beyond what any normal person would withstand.

I am not lazy. I am not a-motivated. I am sick, I am a fighter, and I have more courage than I thought possible. Most of all, I am tired of being abused because of my illness.

 

[Mij]

@SDSue They don't understand how much will power it takes for us NOT to do activities?? That was a hard lesson I learned. The little voices in the back of our minds saying, yes do more, yes you feel good today-just do it- and then dealing with consequences/reality of this illness.

 

[GracieJ]

If exercise fixed this, I would have been fixed inside two years, around 1992.

Instead, I am looking back at a history now covering 24 years of ups and downs.

Along with "spoons" and energy points (so many "points" to "spend" daily), we need the marathon analogy.

I work with athletes, many who run marathons. For a while, I was at a loss as to how I could offer helpful advice to a marathon runner as a pwmecfs. Who was I?? But my clients lose their ROM issues and improve their game, whatever it is, so I stopped worrying about it. Recently, working with another runner, it clicked: I am succeeding at helping them because I am going through a similar mental process at a very different level. I run my own "marathon" or preparation for it daily. My "marathon" is normal function, and it takes a similar path of mental focus and discipline on a constant basis, not to mention handfuls of supplements, a strict diet, and constant vigilance to avoid crashes. It includes involuntary isolation as a side effect, as I have to spend a lot of my off hours horizontal and quiet to be where I am at.

So I continue to build my clientele of runners. Some come in off others' referrals.

I just smile to myself. . . they have no idea their massage therapist has ME/CFS and is carefully pacing herself to be there, or that that ability to pace and the miracle that allows me to work a physical job all stem from successful application of laws of health and movement.

It took over 20 years to get here, trial and error and the grace of God.

Exercise is the first logical tool we grab at when things start getting bad, thinking we are just out of shape. It is the worst thing to start with. It is a side tool, not the main one, and has to be used with great care and sparingly to have good effect. I think it is totally possible for improvements and maybe even recovery/remission to happen without it.

When a good day is just getting dressed, a marathon has been run. It deserves the same cheers from the sidelines, an important "finish line" in its own right. I've been there. There is no one cheering. There should be.

 

[manna]

walking is commonly taken up by people who are in alot of emotional and psychological distress (thats on top of physical stress as far me/cfs goes). i read that somewhere. could be one of the reasons why we tend to try it.

 

[Keela Too]

Walking is the single thing I miss most, but which for me seems to be the one thing that causes me to flare!

It's so sad, as I loved to walk with the dogs or with family on holiday. A rainy day with the kids was always a reason to take a good "stomp" along a beach with the wind and the rain in your face. Afterwards truly enjoying a hearty stew and a few glasses of red wine by the fire......

When first ill, my appetite fell and I lost weight (I was never bed bound) and my Dr advised 3 short walks a day to help build my appetite. Thankfully I soon got better advice from ME peeps on the internet, but still I loved walking - so I tried slower walks, alternate day walks, and all sorts in order to keep up with walking.

Eventually I realised it wasn't working. Now I "walk" from a mobility scooter. Keeping my walking to a minimum means I can still socialise, read books, and faff on the computer. Walk more? and I loose the ability to socialise - I start stuttering and not following conversations.... and I hate that.

So I hardly walk at all now. 600 steps daily... some would call that bordering on severe, but I don't because I can still get outside, still meet friends sometimes, and still have a bit of a life, even if it is using wheels.

So I guess I'm saying I'm VERY cautious about exercise, because I've lost so much by over doing things. When first ill I could still walk 20minutes at a time and I'm guessing I walked about 3000 steps or more a day.... So even with caution, I still haven't managed to avoid decline totally.

I'm two years ill now and just taking it all one day at a time. I'd love to exercise my way out of this, because I love to exercise.... but just as it's not possible to spend your way out of poverty, so I can't see how I can exercise my way out of ME. It doesn't work....

So until I've won the equivalent of the ME lottery (a spontaneous recovery) I'd better just get used spending very few spoons! xxx

 

[Snow Leopard]

I'm of the opinion that no one has been cured by exercise, but a few people have spontaneously recovered at the same time as exercising (coincidentally) and exercise simply improved their rehabilitation.

 

[Valentijn]

I don't think it's even a matter of believing accounts of being healed by exercise, etc.

It's in the very definition of the disease, for CCC or ICC ME. ME is largely defined by exertion making patients sicker. Furthermore, ME patients have immune and neurological dysfunction which is independent of exertion.

It's completely illogical to suggest that something that necessarily (by definition of the disease) makes our ME symptoms worse also can cure our ME. Hence it is my view that exertion cannot improve ME symptoms, and anyone substantially helped by exertion either 1) never had ME, 2) had already recovered from ME spontaneously, or 3) is in remission.

The very identity of ME precludes the possibility of exertion being curative.