has anyone really benefited ie cured by exercise?

[taniaaust1]

regardless of how ill we are, we can all do a little bit can't we? I started out walking to the garden gate and back.

I rather use that little to do something with to do something which needs doing ather then wasting it on just going to a walk to the garden gate and back for no reason at all. The equalivant of doing that could be to get half of my clothes hung out to dry rather then then going smelly in the washing machine!!. For some of uts it just wouldnt be sensible to waste our spoons on doing an activity just to walk to a garden gate and back (unless it is to collect the mail).

Many of us already are doing too much in our daily lives just in order to live a life and survive.

 

[Valentijn]

A good friend of mine encouraged me not to buy a mobility scooter, and She continues to encourage and motivate me to do the things I achieve. So in my opinion having someone encouraging you to achieve more is a good thing.

Doesn't sound like a good friend for an ME patient to have. A mobility scooter makes the difference between me being stuck in the house all day, and being able to go out for "walks", go to shops, chat with people, enjoy nature, etc.

The Dutch CBT group is opposed to mobility aids because they think we have a psychosomatic problem and just need to exercise more. Is that what you or your friend think?

Too many highly disabled ME patients have enough insecurities about using mobility aids that they desperately need, and that will make their lives much more pleasant. We don't need to hear bullshit about mobility aids interfering with recovery here as well.

We have PEM. Excess exertion and even normal or minimal exertion makes us much sicker. It does not help us, and you need to come to terms with that.

 

[SOC]

Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in exercise but remain ill.

I don't follow this logic. I can just as easily say, "Think of all the people who have been ill for a long time, they don't eat a high calorie/high fat diet but remain ill." By your logic that would mean that eating a high calorie/high fat diet would make them less ill.

Try replacing "exercise" in your statement with anything else to see how the logic fails.
1. "Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in religious services but remain ill." By your logic, we should conclude that going to religious services would cure ME.

2. "Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in Japanese language classes but remain ill." By your logic, we should conclude that participating in Japanese language classes would cure ME.

3. "Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in midnight headstands during the full moon but remain ill." By your logic, we should conclude that participating in midnight headstands during the full moon would cure ME.

See how it doesn't make sense?

regardless of how ill we are, we can all do a little bit can't we? I started out walking to the garden gate and back.

I think this clarifies what in your position has offended so many members. You are implying that we are NOT doing "a little bit". Most of us are doing much more than "a little bit". We are doing laundry, cooking meals, cleaning house, doing grocery shopping, and much more. That is significantly more effort than "walking to the garden gate and back". Why do you assume other members are not even doing a little bit of activity?

You said in another thread

That's the cost to me for exercising in the way I do, at times there is simply nothing left for anything else, I have a million and one things I really need to do, but never have the energy to do them. Walking and cycling fitness doesn't necessarily transfer into an improved ability to do other things, and I'm not sure it actually improves the illness, it just makes me very good at walking and cycling, and that brings a sense of achievement to my life, and I do also get a huge amount of pleasure from being out on my electric bike, and that helps with my mood. So I'm pretty fit but still chronically ill.

[my bolding]
The difference between you and the rest of us is NOT that we're not active. It's that we choose to become more functional -- have an improved ability to do other things -- rather than expend energy walking and cycling and not be able to do basic self-care, take care of our homes and families, or earn a living.

I would appreciate it if you would stop implying that people with ME who choose not to do aerobic exercise are not doing any activity. We ARE doing "a little bit". Some of us are doing a lot more than "a little bit" just by being mature adults trying to take care of our most fundamental responsibilities.

 

[taniaaust1]

It's good you're doing what you can, keep it up. I haven't given a full picture of my progress, it's a bit more complicated and variable, all I'll say is that if you're working to your current limit you'll be more able to spot when a subtle change occurs, for me that was always in colder temperatures.

There are those who do need the encouragement though.

Encouragement to exercise, I think only lazy people could need encouragement and I think most with ME just are not lazy and in fact may be the opposite!! Most of us have got worst due to pushing ourselves too much to do things rather then resting when we should, an indication that we arent lazy.

Implying people are lazy eg just need encouragement to be more active, many would view that as insultive. A persons motivation towards activity when one hs this illness, the feeling non motivated happens with the sicker we are and probably is a protective thing to stop ourselves from further making ourselves worst.

 

[taniaaust1]

ME patients, by definition, are negatively affected by exercise.

I am a realist. I am actually a very positive person, but I do not deal in false positivity.

You are assuming that your exercise healed you.
I take the view that your healing allowed you to exercise.

I look at Artstu's case like that too. She said she stuck to her limits and walked for two years for 20 mins before she had a shift in her condtion. Looking at that fact in a logical way, it would actually imply it wasnt the exercise which helped her at all.. if it was the exercise, she would of improved far sooner!

 

[taniaaust1]

stridor had 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

I'd like to say that my experience to exercise when I could exercise regularly is the same as Sushi's. It actually didnt help me at all thou I was able to do it. I was no fitter or stronger 3 mths later even with exercising daily or every second day (I was doing 2 hrs of exercise at a time on those days).

The model that if you can exercise without a crash or setback, that that is going to help your ME/CFS further.. in my case has proven to be just wrong. My body reaches a point it just cant improve beyond.

Unlike Sushi, I had no OI improvement with doing months of leg exercises for my dysautonomia.

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.

Artstu's quote above.

When I was able to exercise.. 2 hrs a day or every second day. I was doing high intensity runs in 30-45 second lots (before dizziness set in and like my muscles would start to like burn out and start to lock up and my leg muscles would go into pain) so I had to walk again for a minute or two for dizziness and other symptoms to calm down (otherwise I'd just get to the point where I couldnt move or would collapse.. inability to get my heart rate up?), before being able to do a short run again. I could do this run and walk thing for 2 hrs straight!! (so was fit) but interesting.. this exercise didnt help any of my ME/CFS at all thou I could do it without after affects at that point of time.

With that exercise my ME/CFS baseline even months later was the same.. and my ability to run didnt increase... the exercise didnt increase my ability to do more at all. Nor did it even help one of my symptoms.

From what Ive read, this seems to be an issue with mitochondria and energy recycling. I have something very wrong with my energy system which doesnt fix with exercise. Im unable to do any form of substained aerobic activity which gets my heart rate up and holds it there.

 

[Sushi]

...
The model that if you can exercise without a crash or setback, that that is going to help your ME/CFS further.. in my case has proven to be just wrong. My body reaches a point it just cant improve beyond.

Unlike Sushi, I had no OI improvement with doing months of leg exercises for my dysautonomia.

Maybe it works differently if you have POTS? I don't have POTS, but OI without POTS.

Sushi

 

[taniaaust1]

Maybe it works differently if you have POTS? I don't have POTS, but OI without POTS.

Sushi

Actually strengthening the leg muscles is one of the treatments for POTS so is something which can help many POTS cases.

 

[taniaaust1]

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.

It sounds as if you are running on adrenaline.

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.

Hi, from what you said, I think you may have or have had POTS and your improvement may a lot of it be due to helping that!

When I was doing the exercise I mentioned, due to my severe POTS, I was doing it in the cold of winter, doing my run/walk at night.. sometimes in the rain, sometimes even in hail. To keep myself cold enough to exercise.. I even ran wearing a wet T-shirt (I probably was putting myself at risk of hypothermina to do this exercise). Its the only way I could exercise is by doing it when cool and staying cool. My POTS at that time was a huge limiting factor and was probably far worst then my ME at that point of time.

POTS would make sense why high intensity could help someone much more then low intensity. In my case.. a low intensity walk was usually bad as with my bad POTS I then wasnt getting enough blood to my brain.. whereas if I ran (high intensity) I felt good while doing it for a short time as then I was getting blood getting to my brain (well till my heart rate got too high for the ME/CFS or I got too warm which then made the POTS hit bad).

Most with POTS know that standing still and not moving much.. is far worst for POTS then moving while on ones feet.

Exercise also can really help POTS people and is a normal therapy for this (thou in the case of ME/CFS people cause of the issues exercises and issues postexertionally, isnt good for most of us).

POTS people have trouble exercising when its warm.

Anyway . I have a theory from reading your posts and what you said, that you do had/have a mild case ME/CFS, but really complicated due to coexisting POTS .. and the exercise you did and your improvement was much due to helping the POTS. (or maybe you just have POTS? that can cause many symptoms and be mistaken for ME/cfs).

Where you ever tilt table tested for POTS and OI issues?

I have a question which may be tricky for you to answer but I think it needs to be asked. What is there about your case which rules out that your problems could be from only having POTS? What makes you think you have ME/CFS and possibly not just POTS?

Your lack of understanding towards what most of us experience, could well be due to you've been misdiagnosed and as I said.. POTS would fit things you've said.

 

[Seven7]

Here is my personal experience: I have worse OI than CFS, so this will not apply much to all.

I am between a hard rock and a hard place because I ALWAYS relapse while exercising, But I do not move forward without it. So I am rethinking the issue. I think I will go back to do strengthening of my leg very gentle w a elastic band and core (easy abs) while laying down and build up slowly so I can work the Cardio EVENTUALLY.

 

[manna]

I was doing Qi Gong and Tai Chi for several years before I got ME (I was also doing yoga classes too), I was still doing these when I got sick and did continue it for a while. I had to stop doing it as I suddenly, it seemed to have someting to do with the ME, developed a huge painful big knot in my back during theTai Chi class. I could then no longer do the movements without a lot of pain and had restrited movement, whereas I was previously extremely flexible due to all the yoga etc (I believe this knot n my back iwas caused by an energy block in my system which was made worst by the drawing of enegy in during the Tai Chi.. due to this illness my energy wasnt flowing right and that caused me issues).. This took several years to go away even thou I had weekly massage (I had a friend who was a massage therapist) trying to fix this issue).

Anyway.. I can say for me that TaiChi didnt help but just caused me issues from doing it. (I also had to give up yogi as I got far too ill to do it, it got to the point where I could do less then the 97 year old in my class without getting quite ill).

I had a very experienced, powerful Grandmaster (he taught around the world at times) as one of my Tai Chi teacher at times. He worked on my energy system but it didnt help me at all. He said I was carrying too much wind energy. I did so much energy stuff trying to get better (also had a lot of reiki sessions as in reiki bakes with several people working on me at once) but none of it helped me at all.

yes some can't make use of tai chi, myself included, i would not benefit if i did it now. reiki did little for me either. ive done my reiki one which i enjoyed. tai chi would make me worse if i did it today. i have seen a "tai chi master"...fortunately what he did to me did "catch" and it produced quite a powerfull healing. id travelled 100 miles to see him and giggled all the way back and felt "full to the brim" with energy. unfortunately i thought id do some other healing when i got ho,me and my interventionm spoiled it. i couldn't ground the same treatment now. some could though, i think. chi transference, from a tai chi master, over time, might even cure the condition for some, imo.

 

[Artstu]

I don't follow this logic. I can just as easily say, "Think of all the people who have been ill for a long time, they don't eat a high calorie/high fat diet but remain ill." By your logic that would mean that eating a high calorie/high fat diet would make them less ill.

Try replacing "exercise" in your statement with anything else to see how the logic fails.
1. "Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in religious services but remain ill." By your logic, we should conclude that going to religious services would cure ME.

2. "Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in Japanese language classes but remain ill." By your logic, we should conclude that participating in Japanese language classes would cure ME.

3. "Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in midnight headstands during the full moon but remain ill." By your logic, we should conclude that participating in midnight headstands during the full moon would cure ME.

See how it doesn't make sense?

Oh come on, that's ridiculous and you know it. M.E experts and some sufferers agree that exercise is good for us. I've never suggested exercise can cure us.

I know you can run rings around me intellectually and pick holes in almost anything I type.
I know I said being fitter didn't translate into being able to do more everyday things. That's not true really, I've forgotten how bad I was a few years ago. and perhaps wishing I were fully fit and able to function normally again. I am better than I was, and I believe that is because I'm fitter, and I'm fitter because I exercised.

No one seems to grasp what I'm trying to convey here. I'll expand a little, you probably still won't be able to relate, and my brain isn't working well today.

When an athlete wants to increase their ability they use interval training, high intensity short duration bursts. That's what I've done. I need to rest now.

 

[Artstu]

It sounds as if you are running on adrenaline.

Hi, from what you said, I think you may have or have had POTS and your improvement may a lot of it be due to helping that!

I think you're right.

I'll also look into POTS again. I know a tilt table test is via a referral to hospital.

 

[manna]

I'm not looking down on you, I just don't understand where the terms you've used come from, I suppose I'm supposed to say can you direct me to the research about solar plexus energy seeing as that's the term I don't understand.

Actually I shouldn't be lazy, and should look myself, OK I don't believe that sort of thing.

http://www.sunstone-holistic-health-and-healing.com/solar-plexus.html

i never mentioned chakras and wasn't relating to them, specifically, in what i said.
more to do with meridians.

 

[Artstu]

Are you suggesting that those of us who can only get around using mobility scooters and wheelchairs are not motivated? Maybe you think the bedbound are even more lacking in motivation? Sorry, in light of the fact that myalgic encephalomyelitis is a neurological illness, not some sort of lifestyle choice,I find your post and boasting of your 'achievements' offensive.

I'm sorry it is not my intention to cause offence. For me at least not getting a mobility scooter was I believe a pivotal moment. I can't speak for anyone else.

I'm not sure what to say about you finding posts about benefiting from exercise offensive in a thread about benefiting from exercise really. I feel saddened that you find something positive offensive, particularly that you feel the need to show your contempt at something I find helpful.

• referring to a treatment that a member finds helpful in a contemptuous manner

 

[manna]

I'm not sure what to say about you finding posts about benefiting from exercise offensive in a thread about benefiting from exercise really.

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

 

[Artstu]

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

Well either way it is important not to fall foul of the rules

• referring to a treatment that a member finds helpful in a contemptuous manner

 

[manna]

Well either way it is important not to fall foul of the rules

how quickly and easily we forget our own misrepresentations, but not those of others, if even they were so. i do it too.

 

[Artstu]

how quickly and easily we forget our own misrepresentations, but not those of others, if even they were so. i do it too.

That's over my head. I struggle with the rules.

 

[jann1033]

A good friend of mine encouraged me not to buy a mobility scooter, and She continues to encourage and motivate me to do the things I achieve. So in my opinion having someone encouraging you to achieve more is a good thing.

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