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Graded Exercise Therapy? CFS for two years.

Posted , 9 users are following.

seidman
seidman

GET is based on the idea that carefully managed increases in exercise, often combined with CBT, slowly improves health.  

I used to to be extremely fit and know my body well.  I quickly discovered previous attempts at exercise to become well again are really really bad with CFS.  

But, very aware of physical deconditioning, I also recognise the need to do more than lay down all day.  So I started a very limited exercise program, about 1/50th of what I used to be able to do, in terms of Cals burned.  At first, over a period of a couple of months I found a gradual improvement and thought GET might work.  But, the improvement levelled out and then decline, needed to weeks off - then trying again.  Similar pattern, repeated three times.

GET manuals seem not to allow for this possibility- they assume continued very slow progress.

Have any of you without anxiety or mood disorders had GET success? 

1 like, 31 replies

31 Replies

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  • katrinablank
    katrinablank seidman

    Posted

    Degrade exercise therapy is the only thing I found to be helpful with CFS. I used to be able to run 5 to 6 miles a day, 5 to 6 days a week, with no trouble. My heart rate suggested I was as fit as an Olympic athlete.

    With CFS the after effects of a longer run were horrific. I'd be too weak to raise my fork to eat dinner. Over the duration of my illness I've degraded down to walk/jogging 2 to 3 miles, 4 to 5 days a week (and not more than 2 days in a rows.) I hope I can maitain this, but I also recognize that I might have to degrade even more. Also, this past winter, I joined a Qi Gong class that was composed mainly of senior citizens. (I'm 37.) The simple motions didn't feel like exercise to me, but I found the gentle movements to be helpful.

    Youtube explains more on mitochnodria dysfunction and why graded exercise therapy not only doesn't help, but actually hurts CFS patients.

    That said, I might not have true CFS. A brain tumor was found and it might be brain tumor fatigue that I've been experiencing (which, acccording to my neurosurgeons, is unlikely).

    • seidman
      seidman katrinablank

      Posted

      If you have CFS it's very mild! I used to be able to cycle flat out 90 minutes 5 times a week. Now I can't cycle hard for a minute!

      Let's hope you get a good diagnosis and some treatment!

    • IngeniumSingula
      IngeniumSingula katrinablank

      Posted

      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. 
    • katrinablank
      katrinablank seidman

      Posted

      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.
  • wknight
    wknight seidman

    Posted

    I haven't done GET, but I have done my own graded exercise program using cycling.

    I have a confirmed diagnosis of CFS from one of the UK's experts in the field and I was going no where with my CFS, constants relaspes until I started my own version of GET. After 18 mths I have a very positive result  and can now cycle 20 miles without any adverse affect on me and am feeling the best I have done in ages. I also gave up work and tried to take all stresses out of my life which I think also helped a lot

    • seidman
      seidman wknight

      Posted

      That's brilliant. I loved hard cycling, GET hasn't worked for me. I have got an electrically assisted bike and can go gently on that for about ten minutes. But two years in, it's less than 1 year in.
    • wknight
      wknight seidman

      Posted

      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.

    • seidman
      seidman wknight

      Posted

      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.

       

    • wknight
      wknight seidman

      Posted

      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. 

    • seidman
      seidman wknight

      Posted

      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!

  • jackie00198
    jackie00198 seidman

    Posted

    My attempts at graded exercise were a disaster. It's very hard for me to believe that GET can work with most people who have ME/CFS.
    • seidman
      seidman jackie00198

      Posted

      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.

  • IngeniumSingula
    IngeniumSingula seidman

    Posted

    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.

    • seidman
      seidman IngeniumSingula

      Posted

      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!
  • Ravenwood
    Ravenwood seidman

    Posted

    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.
    • seidman
      seidman Ravenwood

      Posted

      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!
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