has anyone really benefited ie cured by exercise?

[Keela Too]

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 would LOVE LOVE LOVE to do more... so please don't tell me that by starting doing a little that I WILL be able to increase. You have admitted that you couldn't increase for four years.

Please understand that I cannot walk more than I currently do right now. I measure it very carefully using a Fitbit so I KNOW exactly where my threshold lies. (Currently about 620 steps a day... I can go to about 800 provided the next day is correspondingly lowered.)

It is <sweary word> difficult to keep myself still enough to NOT do more.... I don't pay at the time but 48 hours later... and pay back is vicious, and sometimes I've lost what I had before permanently.

It is NOT that I need encouragement to just start by walking to the garden gate, believe me!!

 

[Artstu]

It is NOT that I need encouragement to just start by walking to the garden gate, believe me!!

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.

 

[ukxmrv]

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.

Yes, some of us can but not at the expense of having a bath/shower, cooking a meal, brushing our hair, paying some bills, talking to our elderly mother on the phone, darning what is left of our clothes or just plain surviving.

There needs to be some benefit attached from walking to the gate. My mailbox is away from my apartment and it may be days until I can get to it. It's the other things I need my limited strength on that stop me from getting there. It's all activity.

If you can make the decision to spend your strength on walking to the gate and back then it means you can either cope with the day-to-day survival stuff or you have someone else to do it for you or you are choosing not to bathe etc.

When I am feeling better I can do all that stuff and walk to the gate and back. I can have weeks like this, then boom back into bed with a sore throat, glands etc.

 

[lansbergen]

There are those who do need the encouragement though.

I don't know any.

 

[Keela Too]

There are those who do need the encouragement though.

That is your assumption, and also the assumption of the psychiatrists who promote exercise as a cure.

I may have thought that in the past (when I was healthy), but I have considerable doubts about that thought now.

Perhaps if depression has also set in then you are right, but that to my mind is a separate issue that needs addressed in its own right.

 

[Artstu]

If you can make the decision to spend your strength on walking to the gate and back then it means you can either cope with the day-to-day survival stuff or you have someone else to do it for you or you are choosing not to bathe etc.

It was a choice I made, everything else was secondary, I have no outside assistance.

For me it is/has worked out well. and that's what the thread is about, benefiting from exercise.

 

[Artstu]

I don't know any.

Given how negative most people on here are to the idea of exercising I'd have thought there are a lot.

 

[ukxmrv]

Maybe Artstu you could consider it all as experience rather than negative or positive? I'd hate for people to think that there was one size fits all approach.

Exercise in particular, needs advice and experience to be balanced, as it has the potential to cause great harm. One of the UK charities medical advisers said that exercise should be treated like a prescription medicine.

 

[Keela Too]

Given how negative most people on here are to the idea of exercising I'd have thought there are a lot.

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.

You are assuming that there are folk who need to be persuaded to do more.
I take the view that illness limits capacity.

These are realistic outlooks unaffected by the need to be positive or negative about them.
Please be realistic about the abilities of others to judge their own capacities, without throwing the negativity card at them.

 

[jann1033]

How many months/years did you exercise for?

That was consistent for the last 14 or so yrs of the 26 I have hadMe/CFS( first 10 were totally crash cycles).

Probably took me two years of housebound doing virtually nothing to get the 10th yr. major relapse under control then I continued to add a little activity as I could and stopped immediately when I got tired at all, rested then did a little more. Guessing it took me about 5 yrs( kind of all blurs together Lol) before I consistently had about 2 hr's scattered thru the day of usable energy. I could get dressed(shower every other day or so) load the dishwasher, make my own meals and do occasional laundry, drive about 10 mins. to pick my granddaughter up at school 6 times a month. That lasted 8 yrs with small flares scattered in when i overdid.

3 yrs ago I tried a part time job mostly answering phones from my home but that was too much so it replaced a lot of the other stuff. As long as I rested as soon as I got the least bit tired occasionally I could go for a short walk or out to dinner or something fun.

This flare up started in march but I am slowly coming out of it. I can walk some, need to use a cane if a wall isn't handy, other stuff is iffy (ie speech, this flare was pretty much totally what I think if neurological type and fatigue symptoms not much flu like symptoms) so I'm not as bad off as 16 yrs ago

 

[jann1033]

Personally I think the rest is what improved me, over exercise harms me, even after years if improvement. PEM has never gone away if I go past my limit and my limit/ ability hasn't really increased much. That's why I started this thread, the exercise your way to remission just has not worked at all for me since 16 yrs after increasing activity as much as i can , i still have CFS. Maybe better controlled than 26 yrs ago as I'm not bedridden like then but am probably 70% housebound, no place close to even 30% of pre CFS activity. It's definitely still there.

 

[Mij]

I am only ill 2 years now. I know where my ceiling is, and <sweary words> it's very low!

You have a chance of more recovery or even remission since you've been ill for only 2yrs. The first 5-6 yrs are very important to stay low and listen to your body. You are fortunate that you have all the information at this stage of your illness. Some of us did not years ago and are paying the price.

 

[Mij]

Given how negative most people on here are to the idea of exercising I'd have thought there are a lot.

I think you are misinterpreting negatively with the reality of ME. It's very easy to feel positive when you are able DO things, and that includes a small amount of activity!

 

[Ambrosia_angel]

I hate exercise but I can't deny that GED does help. I did GED and felt that it did help in some aspects but not all (the fatigue etc). But people need to remember that there is a big difference between GED and physiotherapy. Physio can be very bad but GED can help. Not just with chronic fatigue syndrome either but with other illnesses similar to CFS. GED has to be very gradual too and doesn't mean you will completely recover with it, just improve.

Its very frustrating as I'm trying to focus on my healthy and a healthy lifestyle but I can't exercise. I'm just missing out on a big component but it will come one day can't wait till I can go for a run or bike ride without having to think about it.

 

[jann1033]

As a side note - I have only recently managed to stabilise my condition. I have added this link as it should help folk to understand that I have in no way given in to this illness, but rather that I have tried to find ways to work around it without causing further decline along the way.

http://abilityforagility.blogspot.co.uk/2014/05/why-do-i-use-wheels.html

LoL , I don't see how being realistic as to your abilities is giving in to an illness. I would guess that unless MDD is also a problem, most of us would much rather be out running and following our hobbies, working, whatever, than sitting on the couch being bored.
I guess it kind of ticks me off when I hear this, and it sure sounds condescending to me, that "how do you know how you feel/ what you can tolerate"?. I am and have always been well aware of how I feel. I know what makes me better and what makes me worse. I get maybe someone who has this for a few years may be in for surprises but after a while you learn. I really hate being told what someone else thinks I am thinking.
I lose muscle stamina very quickly and don't get it back, no matter how "well" I am. For example thru out my illness if at all possible I will use my photographic equipment. My kit with my lightest lens weighs about 6 lbs. I will take photographs basically even if it nearly kills me ( I've literally crawled thru snow to get a shot, obsessed, yes LOL!). I notice a big difference in the photos I take at the start of a session vs. at the end of a session. if it were purely deconditioning it would be at the start as well since i can't do it regularly like i used to but now only occasionally. my muscles get tired and don't recoup, that has been through out the course of the illness

 

[Keela Too]

What I said:

I am only ill 2 years now. I know where my ceiling is, and <sweary words> it's very low!

Reply from Mij

You have a chance of more recovery or even remission since you've been ill for only 2yrs. The first 5-6 yrs are very important to stay low and listen to your body. You are fortunate that you have all the information at this stage of your illness. Some of us did not years ago and are paying the price.

I live in hope indeed.

I also recognise that being computer savvy and finding an ME group only 2 months after onset has helped me enormously.

I was able to read CCC and ICC and recognise that in all likelihood I had ME. I also quickly realised that the advice of my Dr to take "3 short walks every day" was probably not helping me.

I am very grateful to the many old hands who gave me good advice freely and generously - and YES I truely believe I would have made myself MUCH worse without that advice.

Thank you to ALL of you..... xx

 

[Keela Too]

Here's hoping many of us will soon be in a position to follow your path and increase our exercise thresholds.... unfortunately that time has not yet come for me..... and I remain much less active than I wish to be. xx

 

[stridor]

I don't think that this thread is overly negative. Exercise is a "hot potato". There are societal expectations and many of us grew up believing that laziness is a sin. Each of us has had to defend ourselves from medical dogma, to family and friends...coworkers. We are not in the mood to defend what we can and can not do here in a community that is supposed to understand.

The message that I am hearing is that exercise is ill-advised until someone recovers to a certain point. Then, it is still "proceed with caution". There seems to be a consensus that exercising too soon is at best, non-productive and at worst, destructive.

I was just thinking that a person following a stroke heals to a point and then benefits from neuro-training. Another with a broken wrist heals to a certain point and then benefits from physio. In the first instance, neuro-retraining will accomplish nothing if undertaken before the inflammation has settled and in the second a person will damage their wrist if they start physio too soon. Just thinking...it's a work in progress.

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). It has been correctly pointed out that this may not extend beyond what anyone, regardless of whether they have ME, might be expected to experience. While this idea seems reasonable, it seems interesting that it is supported (entirely?) by those who are not well enough to engage in a significant level of activity yet (no judgment....ever).

I think that it is interesting and relevant that a few of us who have been able to do this are saying that we are not so sure that exercise is not helping us beyond what might be generally expected. I don't think that we should be discounted 'out of hand'. There are many things yet to learn about ME and recovery from it.
Whether it is something along the lines of BDNF or if it strengthens energy pathways, I pray that each of you can find out for yourself some day. brad

 

[peggy-sue]

You wouldn't like to come and hang my laundry up, rather than lift weights in the gym then?

 

[Artstu]

You wouldn't like to come and hang my laundry up, rather than lift weights in the gym then?

I remember those days now you mention it, we soon forget how bad things used to be. I'd still choose a bit of cleaning or gardening over weights any day.