BBC 2 October 2013: 'Exercise 'can be as good as pills'' for managing disease

[MeSci]

The problem is if we are trying to pace we need to take ALL the effort our bodies struggle with, just to stay alive, into consideration.

I used to shower and wash my hair every morning.
Now, I can only manage once a week - it is a major activity.
I could do it every day, but I wouldn't be able to do other essential things - such as get a meal together.

That does not make me one 7th of what I used to be - just 6 times dirtier than I used to be.

Life is balancing this business of "robbing Peter to pay Paul."

Embrace your inner slob. I have!

 

[peggy-sue]

It was quite loved and healthy before I got ill - I was a clean slob then.

 

[Little Bluestem]

While it is overdone, I think there is health value in exercise. I sometimes wonder what my reduced ability to exercise is doing to my long term health and life expectancy.

 

[Keela Too]

It's a real catch 22. I may have lost weight since coming down with ME, but I'm fairly convinced that my body fat percentage must now be higher, simply because I have lost so much muscle mass.

 

[Firestormm]

It's a real catch 22. I may have lost weight since coming down with ME, but I'm fairly convinced that my body fat percentage must now be higher, simply because I have lost so much muscle mass.

When I was first diagnosed - over a decade ago now - I too lost a heck of a lot of weight. I used to be called 'Skeletor' in a friendly sort of way. But when I entered the 'chronic' phase my weight piled on. My last major relapse, some 6 years ago, resulted in similar weight loss, but again, this has been followed by weight gain.

Now I am trying to increase my exercise daily, but in a way that doesn't hit me too hard in terms of tiring me out, or elevating the symptoms. However, as peggy-sue was I think saying, it is hard trying to fit in a short walk each day, and still maintain the 'normal' and necessary things around the house and in terms of 'work' i.e. my voluntary duties.

Quite often, something has to give. And trying to build that flexibility into any fixed programme is impossible. I can't say that a daily walk - even if I manage to sustain it over a week - has reduced the impact of said walk as time has gone by. It hasn't, but it does give me a 'buzz' from now being able to at least do it.

Is my exercise helping my weight? I honestly doubt that it is. It is too little really, even if I do 'push it' in terms of speed, but I think it is better than nothing: so long as I can a) actually manage it, and b) deal with the fall-out. And b) depends I think on how I am feeling generally.

It is very hard this management lark. Sometimes you have no choice but to go out of course - e.g. shopping for food even if my parents are able to lend a hand - but exercise for exercise's sake is a difficult activity to factor into the equation. Too many variables.

 

[Snow Leopard]

You have to do a lot of exercise before you lose weight. Many people actually find it hard to lose weight through exercise unless their diet is already well under control, because when you exercise your hunger tends to increase out of proportion to the amount of energy you actually consumed...

 

[Keela Too]

It is very hard this management lark.

My weight is actually at ideal now.... and I've having been over weight before ME I've decided to be very careful with what I eat now in order to keep it there......

Mind you it does mean eating very little.

Previously I would diet and loose weight quite quickly on 1400cals a day. Now according to Fitbit I only burn 1350 cals a day - and yes I am very incapacitated just now - not bed bound, but I spent most of the day on a recliner chair.....

So loosing weight, even only slowly, means eating only 1200 cals a day. That's not a blooming lot!!

My problem now seems to be keeping what I do low enough to prevent further worsening.... and I'm doing much less well at that than at maintaining my weight....

 

[Firestormm]

I've not read this paper, but perhaps it could be read as showing how ineffective a lot of drug treatments are. Over the last few years, I've come to suspect that a lot of the claims made about the efficacy of treatments are pretty exaggerated/spun/dishonest.

Morning Esther

Do you mean that the science behind the pills is suspect? Or that the science claiming them to be effective is out of synch with patient experiences in the real world?

 

[Firestormm]

You have to do a lot of exercise before you lose weight. Many people actually find it hard to lose weight through exercise unless their diet is already well under control, because when you exercise your hunger tends to increase out of proportion to the amount of energy you actually consumed...

Indeed. And people with ME do have problems eating or maintaining a regular healthy intake of reasonably sized portions. There is also this notion that eating = energy and as we have low energy, perhaps we eat more at times; or like everyone else - eat the wrong things.

I do tend to eat too much carbohydrate. I realise this. And less fruit and fresh veg for example. My budget is a constraint as is accessing the shops with enough frequency to support a fresh diet. I am not saying my weight gain can be laid entirely at the door of my inability to exercise enough: although it has only really been in 2013 that I have felt well enough to emerge from my 'four-walls'.

I think the mixed messages that many are receiving about ME and exercise do not help either. And I know that I am disinclined to move beyond what I determine are my limits - although I will push them gently now: if I am able to push other activities to one side to compensate.

At the end of the day you are on your own: and doing what is 'right' is a personal decision. What works for one probably wont work for all of us. We just have to find our own way through trial and error.

 

[MeSci]

When I was first diagnosed - over a decade ago now - I too lost a heck of a lot of weight. I used to be called 'Skeletor' in a friendly sort of way. But when I entered the 'chronic' phase my weight piled on. My last major relapse, some 6 years ago, resulted in similar weight loss, but again, this has been followed by weight gain.

Now I am trying to increase my exercise daily, but in a way that doesn't hit me too hard in terms of tiring me out, or elevating the symptoms. However, as peggy-sue was I think saying, it is hard trying to fit in a short walk each day, and still maintain the 'normal' and necessary things around the house and in terms of 'work' i.e. my voluntary duties.

Quite often, something has to give. And trying to build that flexibility into any fixed programme is impossible. I can't say that a daily walk - even if I manage to sustain it over a week - has reduced the impact of said walk as time has gone by. It hasn't, but it does give me a 'buzz' from now being able to at least do it.

Is my exercise helping my weight? I honestly doubt that it is. It is too little really, even if I do 'push it' in terms of speed, but I think it is better than nothing: so long as I can a) actually manage it, and b) deal with the fall-out. And b) depends I think on how I am feeling generally.

It is very hard this management lark. Sometimes you have no choice but to go out of course - e.g. shopping for food even if my parents are able to lend a hand - but exercise for exercise's sake is a difficult activity to factor into the equation. Too many variables.

I think it is becomingly increasingly recognised that exercise has no significant effect on body mass.

I too had an initial ME stage where I lost a lot of weight, and a later one where I gained too much weight.

Nothing I did worked to shift the weight, until I reduced my carb intake.

Last year, after studying papers on leaky gut and acidosis, I tried cutting out gluten, and the weight started falling off rapidly. Then I reduced sugar and grains generally and added some supplements. Within a few months I was back at my ideal weight, and it has stayed there. After the weight loss I noticed a slight gain, which appeared to come from increased muscle mass. The loss of mid-body fat and gain in muscle has made me more flexible again and increased my strength.

I have not deliberately exercised at all. I am quite active anyway, but the muscular improvement has enabled me to do more essential activity without adverse effects.

The regime has produced multiple improvements, including things that doctors have prescribed numerous things for, none of which worked, and/or which had adverse effects. This includes disappearance of often-severe dermatitis, and major reductions in sinus congestion and IBS.

 

[MeSci]

Indeed. And people with ME do have problems eating or maintaining a regular healthy intake of reasonably sized portions. There is also this notion that eating = energy and as we have low energy, perhaps we eat more at times; or like everyone else - eat the wrong things.

I do tend to eat too much carbohydrate. I realise this. And less fruit and fresh veg for example. My budget is a constraint as is accessing the shops with enough frequency to support a fresh diet.

I don't have to limit how much I eat since going low-carb. I can eat as much as I want. I don't need to suffer hunger! The hunger is largely due to the fact that carbs cause extreme blood glucose swings. After eating carb, blood glucose soars, then plummets. Low-carb keeps it steady.

Re fresh produce, Abel and Cole and Riverford deliver organic veg boxes, and supermarkets can deliver too. (I use Asda.)

 

[rosie26]

MeSci haha !!!! you said "Embrace your inner slob" lol !! That has been a hard one for me. I am one of those people who cannot bear to walk around in pyjamas all day long ha !!

I have to get dressed, man that has been hard over the years, struggling to get dressed, I even put on makeup. It's crazy but it makes me feel more normal with this strange and horrible illness. I then hope back into bed after this, my day bed that is. lol