GET experiences??

[Nightingale]

Hello everyone!

Hope you've had a lovely holiday season and new years!

I was just wondering what your collective experiences have been with Graded Exercise Therapy? I tried it for a few months about a year or more ago, and I got up to doing a 30 min walk every day. Then I relapsed pretty hard and had no wish to do it again, feeling that rest was what my body really needed.

I would like to know other people's experience because I actually really miss exercising. I'm putting on weight and I LOVE food. I love to cook and bake. When I was well, I'd always rather go for a run or exercise rather than watch what I eat too closely. Not that I eat too badly, normally, but I love chocolate.

Anyways, what's been your experience with GET? Or even just gentle exercise on your own? I'm happy to try and exercise a little bit, but I'm scared of making my condition even worse.

Thanks!

 

[JeanneD]

My specialist suggested very, very, very mild strength and stretching exercise when I improved to moderate. That's like 1-5 minutes of light weights a couple times a day, and stretching as I tolerate it. Gradually increasing exercise has only ever made me worse, which is consist with what we know of the illness, so I'm not surprised. My specialist does not recommend increasing exercise beyond increasing weights in my strength exercises and only increasing very slowly as tolerated. Not more time exercising, just more resistance. NO aerobic exercise, which includes longer stretches of light exercise.

Nothing there that would burn calories in the way you'd like, I'd say.

 

[Richard7]

Like most people in our culture I started this journey with the belief that exercise would make me better. it did not.

Mark van Ness http://www.workwellfoundation.org/sample-page/ has made it pretty clear that people with CFS who try aerobic exercise find their capacity declines.

What they suggest for people in the top quartile or so, is small amounts (4 reps) of horizontal resistance exercises with a heart rate monitor.

The idea is that since the aerobic system is not working and any exercise that you do should be focused on improving the anerobic system.

I hope this helps.

 

[Nightingale]

Thank you for your responses! I've read a couple of the articles you suggested @Richard7 and I think I could try some anaerobic exercise, like gentle stretching to start with. It's a far cry from what I used to do when I was well (running and exercise bikes were my thing), but it's something at least.

I think I also need to revisit pacing, as I think I may be falling back into the boom and bust cycle. If anyone has any tips on pacing, I'm all ears!

Thanks again!

 

[hamsterman]

I think the problem with the GET, is that it was done under the premise that you could do it indefinitely, and go beyond your envelope, ie anaerobic threshhold, and eventually be 'cured'. This is a very dangerous idea... because people would start GET... and notice a slight improvement... and then continue 'grading upwards', until they are deep in PEM territory... and then crash in the most horrific way. I've seen several people's baseline go WAY down because of GET.

However, you can use extremely mild exercises and very subtly gain a little bit of conditioning without ever going past your AT. I'd recommend a heartrate monitor for that.

 

[arboretum]

I've done some GET, but the main person I did it under was pretty good. He knew a lot about pacing and not crashing, and had a lot of knowledge about how to manage CFS well. So, he didn't make me increase any exercise I did if I couldn't increase it without crashing or any negative consequences, and he didn't make me do any or more than a little exercise on bad days or during crashes.

So I was able to increase the exercise I did over a long period time (over a year), which has been mildly beneficial, but I've plateaued (and there was a period where I was doing too much exercise and it was harmful). I'm still almost housebound though.

The most important thing was pacing and not crashing though. Without those things, and the familiarity and understanding of my exercise therapist, I wouldn't have had any success. So, if possible, you need to see someone that understands the importance of avoiding negative consequences, not pushing you beyond your limits, and understands that GET has limits.

So, in conclusion, if you can do any exercise without negative consequences, and if you can increase it a bit without any negative consequences, I'd recommend it. But doing it without any negative consequences is really important. For me, it was easy to get to the point where the exercise was having a negative impact, and you need to watch out for that and decrease your exercise if that happens.