How I Regained my Ability to Exercise Three Years into Having Chronic Fatigue Syndrome

Johannes at the top of a california hill

Discover how I regained my ability to exercise, even though I never thought it possible.

Please note that the type of exercise I describe in this article was not GET, which can easily harm your health if you have Chronic Fatigue Syndrome (ME/CFS). I always stayed within my safe exercise limits, which meant that I avoided triggering post-exertional malaise.

While exercising without triggering post-exertional malaise is a crucial element of managing ME/CFS well, exercising the wrong way can be harmful. Read this article for inspiration only and the free e-course lesson to learn how to find the level of exercise that’s appropriate and safe for your unique situation.

For many, post-exertional malaise is one of the most debilitating symptoms of Chronic Fatigue Syndrome. It surely was for me: when I was at my worst, even short walks exacerbated my symptoms for days to come.

When shortly after starting to practice the amygdala retraining techniques my brainfog, mood, and mental stamina improved, my ability to exercise still lagged behind.

It made sense to me: Sure, calming down my nervous system through the Amygdala Retraining Program could make me feel better, but how could it possibly help my body heal on a physical level?

The first Breakthrough

To make my exercise breakthrough possible in 2010, a great deal of coaxing from my wife, Erin, was needed. I was hesitant to give exercise another try, as I had failed at it many times during the previous three years since I had gotten ill.

Finally, Erin got me to sign up for a gentle Yoga class with a teacher that I had met through my meditation group. Key to my willingness to give this group a try was that the teacher knew my limits and promised to help me not overdo it.  I also took heart in that the class was labeled “gentle” yoga. Erin and I were the only people under sixty in that class, but, hey, I had to start somewhere.

And this time, exercising worked for me!

While I did my gentle yoga stretches and poses, I watched my pulse and energy levels carefully. After, to my surprise, I remained post-exertional malaise free after the first time, I gradually increased the intensity and length of my yoga poses. I always paid close attention to my body for the next few days after a class, and only increased the level of exercise if the previous class didn’t exacerbate my symptoms.

I vividly remember the first time after I had first gotten ill that I felt sweat on my body from having worked out. It felt scary, so I had to use the amygdala retraining techniques to not freak out about it—but at the same time it felt exhilarating.

Being able to exercise again confirmed that doing all of the mind-body techniques intended to bring my body into a healing state had actually worked. Using my mind to influence my physiology, I had helped my body recover some of its strength.

How I improved even further

I usually made further improvements in my ability to exercise when I was most consistent about my efforts. One of the best things that happened to my physical fitness was when I attended a 4-day a week English writing class at my local community college last year. The college campus is a 15-20 minute bike ride away, so attending the class gave me two workouts a day that were perfect in intensity and length.

Along the way, however, I experienced a few set-backs. For example when my knee started hurting soon after I began riding my bike on a daily basis again.  Fortunately though, all I needed to do was to go to a doctor and get helped—which in and by itself was an exciting experience for someone whose health problems during the past few years were beyond most doctors’ healing powers.

With the help of an accountability buddy and the Online Self Care Hour, I’ve now been able to make exercise a daily habit. My daily exercise habit is paying off in heaps and bounds: going for a 30-minute brisk walk each morning gives me extra energy during the day and better sleep at night.

This is much along the lines of what Dr. Lucinda Bateman has observed in her patients, as she shared in yesterday’s CFIDS Association of America’s webinar: “Through exercising within their safe limits, patients can counteract the deconditioning of their bodies and generally experience a decrease in symptoms and improved sleep.” To discover what exercise level we can tolerate, Dr. Bateman suggests that we begin with very low levels of exercise, pause the day after the exercise to see if it triggered post-exertional malaise, and only repeat, or carefully increase, the exercise the day after the break day if it did not worsen our symptoms.

Over to you

What do you think—is it time to give exercise another try? Or maybe take the very first step by bringing your body into a healing state through amygdala retraining?

Take a moment to check in with yourself and find an answer to the above questions that feels right to you.

And then commit to taking that next step toward regaining your health!

P.S.

If you do decide to give exercise and/or amygdala retraining a try, you may find that my free e-course lesson How to Benefit from Exercise Even Though You Have Chronic Fatigue Syndrome and the money-back guarantee Amygdala Retraining Program are just what you need right now. Have a look!

Print Friendly

IF YOU FOUND THIS ARTICLE HELPFUL…

...You'll also love my FREE newsletter: Get new articles, plus:

* A chance to win a 1-hour Recovery Breakthrough Session
* Special "newsletter-only" dispatches, events and discounts, and
* Melt Away Tension and Experience Peace Guided Meditation ($19 value).

Comments

  1. I think that the term exercise can be very prescriptive for some of our colleagues with CFS/ME. To me exercise means repetitive movements, which can rapidly bring on PEM for me. I can only climb one set of stairs at a time, or walk a certain distance without having to sit or pace in some way.

    I prefer to think of “exercise” as physical activity which can, in baby-steps, be spread throughout the day.
    For me I like the idea of piggy-backing some activities together. When I make my first cup of tea in the morning I can stretch. When I use the bathroom I can do stretches or isometrics. after taking out the garbage I could do a wall push away.

    I’d be interested to hear if others use this form a language and or pacing to improve their physical fitness or at least halt de-conditioning.

    • Your way of pacing throughout the day seems right on. We get a lot more movement into a day if we do it in mini increments. Thank you for sharing.

      I also like how you choose language that supports what you are doing.

  2. i am very happy you managed to exercise your way through your chronic fatigue, i have ME. my distressing neurological symptoms are a severe and painful sensitivity to noise,light and movement around me. ME is a very complex neurological and misunderstood illness. its very damaging what you claim as ian duncan smith and co will be forcing us all into GET and CBT which makes ME worse. even if my energy levels increased,what would help with the other symptoms i have just described? my goal is to educate people about real ME, not chronic fatigue syndrome which does respond to GET. i wish you well in the future,i have tried gentle yoga, etc ,i am now severely bedbound because of all that. until then i am desperate for a test and a cure

    • Dear Jane,

      I actually do have ME. I believe this article applies to both ME and CFS.

      I understand that a percentage of people with ME/CFS is not able to exercise at all and not even able to leave the bed. I know what a terrible and debilitating illness ME/CFS can be.

      Yet, as Dr. Bateman, Dr. Campbell and other well-respected ME/CFS experts suggest, exercising to the limit of our ability is crucial for managing our condition.

      I don’t mean exercise GET style. Graded exercise therapy requires patients to increase their exercise limits even when it’s more than their body can handle. Key to my increasing my ability to exercise was that I never did more than I could do without triggering post-exertional malaise.

      With regards to Cognitive behavioral Therapy, while for most it won’t be a cure, studies have suggested that it may have benefits for some people with ME. I have real ME and using a mind/body approach (not CBT but Amygdala retraining which contains some elements of it) was key to reaching my optimum health and happiness. I believe that there are better mind/body approaches to ME than CBT, but CBT is better than no psychological support at all in my opinion. People with cancer benefit hugely from psychological support. why shouldn’t people with ME? Plus, sympathetic nervous system hyper-arousal (activated fight or flight response) is a key pathology in ME, which makes it even more likely that a mind/body approach is very beneficial.

      With regards to your neurological symptoms, exercise may not directly reduce them. However, a holistic mind/body approach will likely to calm down your nervous system and also have a positive effect on those symptoms. Again, in your case it’s unlikely that it will lead to a cure, but even symptom management can make a big difference in a serious illness such as ME.

      Finally, I wholeheartedly acknowledge that an illness such as ME, each person finds different things that work or don’t work for them. I did not mean to imply in this article that what you should do is increase your level of exercise if your body responds badly to it. Please don’t. However, this article is meant to inspire those who haven’t tried exercise in a year or so and have noticed some changes in their condition lately to give it another try. Even if one fails, it deserves to be tried as ME/CFS experts agree that it’s a crucial element of managing one’s condition.

    • Claudia says:

      I’d just like to say that whilst I whole-heartedly agree that cfs and me are very different illnesses (as some American neurological studies are now proving) you negative remark about this guys post pointless and unhelpful. Some people with cfs or me do benefit from GET, some benefit from CBT and some don’t. This guy isn’t forcing you to do anything, he’s simply offering an experience that may be helpful. Don’t damn his approach because it doesn’t suit you, it will help some people and some people like me currently experiencing a severe relapse it reminds us to have hope.
      Regarding CNT, again it’s different for everyone. I’ve had some help with my cfs from it, and a friend with me swears by it, but we’re all different and need the various options to work out what is best for us.

  3. Been diagnosed with ME for about 16 years
    A sure fire way to relapse is regular exercise however gentle

    Glad it worked for you.

    • I’m sorry to hear that even gentle exercise is not tolerated by your body. It is very well possible that your ME just doesn’t allow for exercise.

      I’m curious, how gentle is your exercise? Do you relapse from getting our of bed? Do you relapse from taking a shower? If you can do one of those two things, it’s likely that your body tolerates at least very gentle exertion. If it does, I encourage you to do what you can do multiple times a day, not just once (hey, don’t get me wrong. I’m not asking you to shower 5 times a day.).

      The exercise can be as little as just lifting your arm and clenching and releasing your fists for 10 seconds every hour. Also, I find Suella’s ‘repetitive movement’ regime in one of the previous comments very inspirational:

      For me I like the idea of piggy-backing some activities together. When I make my first cup of tea in the morning I can stretch. When I use the bathroom I can do stretches or isometrics. after taking out the garbage I could do a wall push away.

      It’s likely that you’ve already tried all this but I just wanted to share it in case you haven’t. I deeply respect your daily efforts to live with this condition and trust that you are doing what’s best for you.
      Many well wishes,
      Johannes

  4. Ah – CFS – I was diagnosed with M.E. (Myalgic Encephalomyelitis) = BIG difference and not to be confused with CFS – M.E. needs proper Biomedical Research – not GET nor CBT – to be put in place to even begin to understand the neurological complexities of this much misunderstood illness M.E.

    • I agree that there is a difference between M.E. which is based on the Canadian definition and CFS which is based on a definition by the CDC. The definition for M.E. is a bit stricter than that of CFS; both are serious conditions that deserve biomedical research.

      I also agree that GET is not a good approach to either illness. Yet I want to reiterate how important exercising within ones limits is to managing either illness well. I’ve been diagnosed with M.E. and due to reading some patients’ negative experience exercise, I did not even give it a fair chance. I hope that this article helps those of us who have not tried exercise for a while realize the importance of exercising in M.E., and give it a fair chance.

      For more ideas what exercising within one’s limits can look like, have a look at my comment in reply to Paul and my e-course lesson on how one can exercise despite having ME/CFS (When I write ME/CFS, I mean both ME and CFS).

  5. For myself I think finding a way to get my body to relax first whether through mind/body work, nutrients, drugs or whatever is critical to being able to exercise. I’m working on it. :)..Thanks for sharing how it worked for you 🙂

  6. Thanks for sharing your experiences. I am glad it worked for you. I find it helpful to have a bank of ideas of things to try in the future, even if I can’t manage it now. It is something to aim towards. I have spent 5yrs now since diagnosis trying lots of things at Drs or OTs suggestion. The current one from our local support group is pacing and setting small goals for ourselves. One lady knitted an egg cup warmer (in a few weeks, but she managed it). Thank you for being brave enough to share your story and respond to the comnents despite the (I assume expected) backlash from the people who aren’t so open to new ideas.

    • Thank you for your sharing your great approach of trying things and for your kind words 🙂

      Having a list of things to try has worked well for me too. I call this list my six month success plan.

      Again, thanks for sharing!

  7. Hello 🙂 I am a young person with ME/CFS and have been on a yoga programme for people with mobility problems such as arthritis for about 3 months! It has helped me so much 😀 yes I am in constant pain and has been no massive improvement but I can now sit crossed legged with both feet flat on the floor, my shoulders aren’t as stiff and my energy levels have gradually increased 🙂 great article!! I know my prognosis is different as 94% of young people recover but seriously its AMAZING and very very low impact my class is all done laid down 🙂 xx

  8. crossed legs flat on the floor 😉 brain fog!

  9. Jesse Hartigan says:

    Thanks, this is helpful, and you have encouraged me to give it another go. One thing I also find, linked to gentle exercise, is the state of mind we are in when we exercise. Cheers.

  10. I bought an electric bicycle (a real bicycle that you pedal, not one of those scooter things), so now I can have the fun of a bike ride without the effort. My strength is improving, although my fatigue has not really changed at all in over a year of this.
    So the exercise hasn’t helped my fatigue, but my well being has improved and that alone is worth it.

  11. Hi Johannes, I just found your blog. I recently ordered the Gupta Programme and have done 3 months of Valcyte, but had to stop the antivirals because I was having such bad reactions to them. I am in my 30’s and I have been ill with CFS since December after coming down with a viral illness and then collapsing, and was bedridden for six months and am now partially bedridden and completely housebound. I can only walk through the house a few times a day and I have difficulty sitting in a chair like a normal person, I have to sit with my legs up. I have made progress, but it’s been slow. When I first got ill I couldn’t even sit up and could barely raise a spoon to feed myself. My question is, do you believe it’s possible with this level of illness to be able to exercise again? Have you seen bedridden patients make a recovery enough to exercise, and how long did it take? Thank you!

  12. Laura Lee says:

    I have subscribed to your course. After reviewing the course summary, I see that you don’t even get to pacing until lesson 5, but I am already in need of that step, and waiting 5 weeks(!) to even get to the basics of addressing what I have already been trying to do by myself for more than a decade is too much to bear. I had symptoms in my teens, then a car accident and a whiplash injury that seemed to accelerate the process of deterioration. Diagnosed first with Lupus in 1998, that was altered to Fibromyalgia by a Rheumatologist in 2001. I have been unable to work even part time since 2006. Had 2-level artificial disc replacement a bit over a year ago, and I am much improved now. According to the doctors at Mayo last July, I no longer have Fibromyalgia, and Chronic Fatigue Syndrome is now the diagnosis. But I also have a congenital foot deformity that should be corrected surgically later this spring. I have been working to build strength and stamina, especially since my spine surgery, but am constantly flummoxed and set back by overwhelming fatigue, pain, etc., despite my consistent and careful attempts to pace myself. Of course, I have addressed the food sensitivities over the years, and have tried every type of therapy and treatment available. I need to be exercising now–especially in preparation for my imminent surgery, that will force me to sit or lie down for up to three months of recovery! Is there any way to jump ahead in the course so that I can try to benefit from your program in a way that would meet my needs and circumstances? (My sole income is SSDI and my resources were depleted a long time ago, so paying someone to coach me just is not an option for me.)

    • Hi Laura,

      Thank you for your message.
      Unfortunately there isn’t a way to skip forward in the course at this time. However, if you google “pacing for cfs,” you will find some info that can help you with that particular aspect of recovery.

      I wish you all the best!
      Johannes

Speak Your Mind

*

I take your privacy very seriously. You can read our entire privacy policy here.
© 2012 Johannes Starke, All Rights Reserved. By entering, you agree to terms and conditions found here. The information on this website is not intended to replace a one-on-one relationship with a qualified health care professional and is not intended as medical advice. Johannes encourages you to make your own health care decisions based upon your research and in partnership with a qualified health care professional. Disclaimer: The entire contents of this website are based upon the opinions of Johannes Starke, unless otherwise noted. By entering your email address you are also requesting and agreeing to subscribe to my free "CFS Recovery Tips" Newsletter. The information provided is for entertainment purposes only.