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Poll: Has graded exercise helped/harmed you?

What has been your experience with graded exercise?

  • I have never tried it.

    Votes: 9 29.0%
  • I tried it and it made no difference.

    Votes: 1 3.2%
  • I tried it and it somewhat improved my condition.

    Votes: 3 9.7%
  • I tried it and I experienced remarked improvements.

    Votes: 0 0.0%
  • I tried it and I experienced a slight decline.

    Votes: 4 12.9%
  • I tried it and I experienced a major decline.

    Votes: 5 16.1%
  • I tried it and it left me in a permanent aggravated state.

    Votes: 9 29.0%

  • Total voters
    31

Seven7

Seven
Messages
3,444
Location
USA
I have to disagree on PACE, Does it work = YES, is it practical = NO. I cannot say at work sorry I am pacing! My issue with pacing is that Life does not work that way so I have issues saying is a good therapy.

I cannot PACE I have a child and a family, when my kid run off I had to run after her and yes I knew that I would crash me but her security comes first.

So who is gonna pay my bills while I "PACE". Trust me, the insurance/disability is not gonna agree to pay you so you can "PACE".

I don't have a problem with therapies that actually work, but they have to be realistic and sustainable, and that you can have some balance in life.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
In the PACE Trial. GET was delivered based on a manual. So as it was a Trial each person was supposedly getting the same approach delivered to them. I think Bob's point earlier is a valid one. In the real world, a patient might receive a therapy he/she or the therapist terms Graded Exercise, or Pacing, or Graded Activity, or something else, or a combination of several approaches. It can be hard to know for sure in any survey if all participants have received the same approach, and delivered in the same way.

There are several differences of opinion over exactly what Pacing itself should entail. I personally think Pacing is similar to Graded Activity Management - an approach I had delivered at an ME clinic on a group course when I was fluctuating between moderate and severe. The actual 'exercise' you did or did not include in your activities was very much down to you as an individual and based on your ability at any given time, but also on what you needed or had to do in your own life. It tried to help you better organise things so as to accomplish the tasks/activities you really neeeded to accomplish - be it brushing your teeth, getting dressed, going for a walk, taking care of the kids, or working. Trying to learn how to live more effectively with your limitations - pushing other non-essential things aside, delegating, bringing in help, appropriate periods for rest etc. etc. Really taking a look at your weekly routines, getting back to basics and then over time, setting realistic goals to try and achive more in areas you needed or wanted to. But all the time being aware that setbacks and relapses could and would occur - then thinking how best to manage them etc.

I think there are at least two driving points behind all these management strategies:

One - the need to accept that your abilities have been drastically altered and you need to accommodate a reduced capacity for activity (to lessen the impact of 'boom and bust' or blindly pushing on through and suffering the consequences). That in itself for me was a necessary wake-up call and I only really accepted it when I met with an immunologist specialising in ME. Prior to that I simply would not accept things. Had an appropriate intervention been available to be in the early years I might have spared myself a great deal of stress and pain and even shortened the time between relapse and remission. It wasn't the case that I could always 'push through' by any means, but when I was for long periods confined to bed - I would lie there not really accepting my ME and feeling guilty and running myself down all the time. For me, I needed that 'slap in the face', that 'wake-up call', that 'official confirmation' that my life had changed and I needed to adapt.

Two - I think we have accepted that where possible it is necessary to try and improve our mobility in order that we don't fall into the deconditioning trap, or so that we can try and prevent further complications arising from being largely immobile. There is a tendency - at times and for me - when I am struggling, to not do anything at all. At times doing nothing is all I can do - but I think you do learn the hard way, that some things are possible. And I have certainly overcome some of my issues by slowly building up 'exposure' once again. It is hard and it is not a straight road by any means, but for me, things like sensitivities to light and noise, and 'exercise' intolerance, have been slowly overcome. Not entirely, and I can't prevent setbacks but I can now accommodate them. I don't believe this takes anything away from the fact of having a 'neurological' or 'immune' disease. But I do think that if I had been helped earlier to learn how to better manage and to slowly and carefully try and do more, once I had accepted things had changed, I would not have suffered for as long on my own.

Edited.
 
Last edited:

helios

Senior Member
Messages
136
Location
Brisbane
While we all have chronic health conditions, no doubt a number of us have different underlying health issues going on, so what might be good for one might make no diff or be bad for someone else. I ticked the 'somewhat improved my condition'. I guess you could categorize two forms of exercise...anaerobic and aerobic. If I try swimming laps at the pool, I will really struggle and be exhausted for the rest of the day. If I play a round of golf I will be starting to struggle at the half way mark unless the weather is cool/chilly, and I will be wiped out for the rest of the day. If I go to the gym however and lift weights I will be fine...generally speaking. In summer I will struggle but not as much as if I had run on the treadmill for 50 mins. In the colder months I always feel better and the gym definitely boosts my health. It is a bit of a catch 22 for me though. As I start to feel well, have more energy, get more strength, put on more weight I cant help myself but get excited and push myself more at the gym, and then I run the risk of crashing (but not real bad as in bed ridden but just a slump for about 3 mths).

when I got CFS when I was 21 it was when I was doing body building and eating junk food, and over training. Now I take rest days, don't stay on more than an hour, pace myself, take pre workout supps, am on TRT, and eat more sensibly. Personally, I think lots more CFS people would be helped if they did an anaerobic exercise like weight lifting. About a decade ago I took a couple of yrs off from the gym and I lost weight and my health deteriorated. Not everyone will be like me. I will continue doing weight lifting as many yrs as I can, but as I get older I will go through periods of varying intensity so I don't crash. One downside that I hate is that when I push myself fairly hard I find I am not as cognitively sharp.Possibly from increased inflammation and or maybe using up nutrients.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
While we all have chronic health conditions, no doubt a number of us have different underlying health issues going on, so what might be good for one might make no diff or be bad for someone else.
agreed

Personally, I think lots more CFS people would be helped if they did an anaerobic exercise like weight lifting.

See above. Personally any weight-bearing activity is one of the worse things I can do.

Interestingly, in ME/CFS, many of us are in anaerobic mode most/all the time. This is considered pathological, as the body is not meant to sustain this indefinitely. http://www.workwellfoundation.org/research-and-latest-news/