I agree with you Fidd. GET does not work with CFS in the way it would with someone deconditioned from an obvious cause ie a fracture. It assumes no underlying pathology and doesn't allow for the post exertional malaise.
Hi Seidman,
I don't have anxiety or mood disorders. After being assessed 3 years ago I declined CBT and whatever group was offered (mainly because it was a 1.5 hour drive away) and I'd recently studied CBT and new it wouldn't help, which was confirmed by a trained counsellor friend of mine. I used my knowledge of treating cancer related fatigue to manage my own condition and rest far more than anyone would suggest. After a while I started to feel better and accept my limitations. I've had occaisional relapses, one was after following a government guidline base health programme through my workplace. It took me several months to recover from that one - I won't do that again. I am going to try the HIT programme for strength though.
I found that what worked for me was initially indoor cycling on a trainer where I could control the resistance and get off when I wanted. Outdoor puts too must stress on the body.
I started with simple spinning of the wheels with no resistance for a couple of minutes. It wasn't until I could do 30minutes indoors (it took me about 8 months) that I ventured outside and did 15 mins. My record is 30miles outside but its all done with very careful pacing, rest days and watching what I eat.
I think you need to pursue this one. I have mild CFS and can't walk fast or up a short hill without chest pain. I don't think I'd have got a diagnosis if I could run but good for you.
Be careful with it! I've had periods of improvement, staying the same and decline. It's easy to overdo things, especially leg strength ones that can get the pulse up. But it's far more satisfying than slow walks!
That's great, I'm glad for you.
Ive heard several things.
1) Younger folk can (not always) become well more quickly, Im in my fifties.
2) Some athletes doing their own stuff are much better in three years, but others do not improve.
3) Folk who have had a severe viral trigger can improve in years two to three.
I suspect there are different versions of CFS!
Going out on an electric bike is very easy - the motor does most of the work. I've found that a joy. Over the first months of that I could go longer each week, but it levelled off then declined. That's repeated a few times.
Yes. We are in the majority. I've read a detailed manual for GET therapists and it only includes three options. Too much or too little gets (no pun intended) you worse, doing GET gets you better . It doesn't allow for any other outcomes. "push through" it says, but if you do and have relapse they say it's your own fault!
I think if we are able to do something we should.
I'd have been depressed if I didn't have good friends that understand. I've also learned some low energy hobbies - reading, knitting et al. Though on the worst days I can only watch TV or lay flat on my back for an hour before propping up a bit.
I also bought an electric bike. I actually find going around on that is actually easier than sitting upright at a table.
You can't increase the distance or time each week as that is too soon and you will decline as you have experienced.
i would sit at a distance for at least a month before attempting an increase. I also don't do say 30mins every time, I will do several at say 20 and 25 mins and then do a 30. Its also important to have rest days, just like the pro do.
That's interesting!
What is a starting time?
I'd go on the e bike say 3 times a week.
Did you measure your pulse?
Are you younger than 50?
ill give it a go!
Yeah, I'm inclined to believe it's not true CFS, but there is a HUGE element of post exertional malaise at play (i.e. the more I do, the sh*ttier I feel, similiar to the more you drink, the more hungover you are the following day, and the symptoms are the exact same). I'm only able to do 15 to 20% of what I used to be able to do on a regular basis. In April I didn't have a single "good" day, because I attempted to work 2 days a week, and my body just wasn't having it. I toughed it out until the end of May (substitute teaching), but with severe insomnia also plaguing me, there's no way I can go back to trying to get up at 5:40 AM when school starts back up again. I'm suuuper eager to be able to be well enough to economically support myself again.
I don't have the answer. I tried to maintain my level of fitness for years after getting sick, and I felt terrible. I stopped exercising hoping that maybe if I let my body heal I would feel better. I still feel terrible. I have no idea what to do either. When I try to exercise now (like you, at a very reduced level) I end up getting injured from the exercise or get horribly sick.
I have found resistance exercises with small weights for 20 seconds at a time good. Press ups, crunches, wall sits, triceps dips, planks, embarrassingly light Dumbbells. I did the whole boom and bust cycle and stopped that!