How to Benefit from Exercise
Even Though You Have Chronic Fatigue Syndrome

Learn how to exercise without worsening your symptoms.

Learn how to exercise without worsening your symptoms.

Although exercising “the wrong way” can wreak havoc on your fragile health, exercising “the right way” will likely be an essential piece of your return to optimum health.

To honor the importance of exercising, I want to shine a light on this sensitive topic. Let me share with you in this lesson:

  • Why exercise is essential for reaching your optimum health.
  • How to begin exercising “the right way,” without harming your body.
  • How to make exercise fun and easy.
  • How to sidestep my mistakes (for the longest time, exercising was one of my blind spots).
  • How to get started with exercise in four simple steps.

Why exercise is essential for reaching your optimum health

According to the great pioneer of ME/CFS and Fibromyalgia self-help techniques, Bruce Campbell, PH.D., exercise can counteract many of the negative factors that come from having Chronic Fatigue Syndrome or Fibromyalgia.

While being ill reduces activity levels and can produce deconditioning, fatigue, pain, stiffness, anxiety, and depression, exercising can help you reverse that downward spiral by increasing your levels of fitness; reducing fatigue, pain, and stiffness; and improving mood.

Think about it: Your body is made up of many muscles. You have muscles in your legs, core-muscles, and even your most-central organ, your heart, is a muscle. These muscles need to be exercised in order to prevent them from deconditioning.

Campbell shares in this article how exercise played an important role in his own recovery from ME/CFS. I, too, have benefited greatly from exercise after some initial struggles. I will discuss my initial mistakes later in this article, and you can read about my successes in this blog.

How to begin exercising “the right way,” without harming your body

If you’re like most of us, you tried to push through your Chronic Fatigue Syndrome when you first got sick, only to realize that your continued pushing beyond your physical and mental limits triggered post-exertional malaise, the severe fatigue that results from doing too much. When we’ve experienced the dreadful effects of over-exertion on our condition, we understandably feel afraid of giving exercise a second chance.

But there is a different way! Top ME/CFS docs Dr. Daniel Peterson and Dr. Nancy Klimas have closely collaborated with exercise physiologists to develop an exercise approach for patients that is safe and effective.

An excellent free video series guides you through the exact exercise protocol Dr. Klimas’ physiologist Connie Sol guides patients through at their Institute for Neuro Immune Medicine in Florida.

The original exercise protocol requires some fancy and expensive testing, but the videos (and the Start with a safe exercise limit part of this lesson) explain how you can apply the exercise protocol without any of the expensive tests.

Watch the videos now.

Video 1: VO2 Max Testing Procedure
Video 2: Post VO2 Max Testing Consult
Video 3: Implementing an ME/CFS Exercise Program

I highly recommend that you sign up to the free online exercise group of the CFS Knowledge Center, the non-profit organization who produced the videos, to tap into more useful videos and peer support.

If you got all your questions answered from watching the videos, feel free to skip the this entire next part of this lesson and go right to the part on Choosing an exercise that’s right for you or How to make exercise fun and easy.

Start with an exercise limit that feels safe to you.

For some people this might be as little as a few minutes of physical activity a day.

Also, watch your heart-rate as your exercise; it may trigger malaise when it goes over a certain threshold. For most people, the threshold is around 60% of their maximum heart rate.

You calculate your safe heart rate in two steps. First, you determine your maximum heart-rate by subtracting your age from 220. For example, a 45-year old person’s maximum heart rate is 175 (=220 – 45).

Second, you calculate your safe heart-rate multiplying your maximum heart-rate by .60. Continuing the above example, the 45-year old person’s safe heart-rate is 105 (= 175*.60= maximum heart-rate*.60).

How many minutes of exercising feels safe to you at this time? Take a guess and write it down.

Tip: If you’re not 100% sure that you can do more than ninety seconds of exercise, start with that. Ninety seconds of the right type of exercise is safe for most patients.

What is your safe heart-rate threshold? Calculate it by inserting your age in this formula:

(220-[your age]) * .60 ?

How to determine whether your current level of exercise is right for you

You know that you are engaging in the appropriate level of exercise if you can repeat it the next day without worsening your symptoms.

Every physical activity counts as exercise.

Taking a shower, grocery shopping, putting your clothes on all requires physical exertion. If you are close to reaching your body’s exercise limit just by engaging in your daily activities, only exercise on the days when you feel you have some energy left for exercise. I recommend keeping track of your daily activity level for a while by wearing a heart-rate monitor and a pedometer. You can find them on Amazon (Amazon.com page for heart rate monitors and pedometers). You’ll be surprised how easily you can exceed your safe heart-rate threshold. You might have triggered post-exertional malaise in the past without knowing it!

Example:

A mother might exceed her safe heart rate threshold by lifting up her child, and many people with ME/CFS might do it when they walk up a flight of stairs. A way for the mother to avoid post-exertional malaise is to sit down and let the child climb into her lap, and one can stay “safe” walking up stairs by stopping for a brief rest halfway up.

For the geeks among you: I have a heart-rate monitor that connects to my smart-phone, and I’m very happy with it because it lets me see a neat graph of my heart-rate during a workout, cleaning the kitchen, or a night’s sleep) in my endomondo app. The endomondo app is also cool because it can turn my smartphone into a pedometer.

If your symptoms are higher than normal on a particular day, reduce your level of physical activity.

Keeping records, the next strategy you’ll learn about, can help you discover the level of exercise that is safe for you even when you’re experiencing a dip.

Keep an activity diary.

Imagine this common scenario: A few days after a person, let’s call him John, starts to exercise, his symptoms worsen. Although, as John later finds out, the increase in symptoms was caused by a cold he picked up, John mistakenly believes that the cause was exercise. He concludes that exercise is bad for him and stops his exercise regime. Our memory and gut feeling sometimes fool us when it comes to tracking symptoms, just like they fooled John in the above example.

Other times, our gut feeling leaves us with a suspicion that something is good or bad for us, but doesn’t give us certainty. We keep wondering without ever gaining certainty.

The solution to this dilemma is keeping records. Keeping an activity diary will give you a long-term picture of your performance levels and factors that might impact on your health and functioning.

I’ve described in detail how to go about keeping records in this last lesson, “The #1 Strategy for Improving Your Health.” If you haven’t yet had a chance to read that lesson, let me give you a quick-starter guide, so that keeping records won’t delay your success.

To get a quick start on keeping records, print out this activity diary template. Post it on your fridge, or any other place where you’ll notice it at least a couple of times a day. Whenever you go by it, fill in any activity you’ve done between then and the last time you filled it in. Remember to include the length, type, and intensity of the activity. If your level of functioning is low, remember to consider every physical activity as exercise. A bed-bound person, for example, wants to include as physical activity how many times she got up in a day.

Be sure to schedule a time with a coach or a friend to evaluate your activity diary. Evaluating it on your own can be overwhelming, which might cause you to overexert yourself in the process or never even attempt to do it at all. Ask for help with evaluating your activity diary; it’s necessary and very much worth it!

Alternate physical activity and rest

You can increase the amount of exercise your body tolerates by alternating physical activity with intermittent breaks.

Example:

Let’s say Karen is okay with exercising for fifteen minutes but risks over-exertion if she exceeds that limit. Even though her current limit is at fifteen minutes of continuous exercise, it is likely Karen will tolerate a total of twenty minutes of exercise if she walks for ten minutes, then rests for twenty minutes, and then again walks for ten minutes.

If you go for a walk, take a book or audio book with you. After you’ve walked for a few minutes, find a place to sit or lie down and read or listen to your book for a little while. Then walk some more. Alternating physical and mental activity is one of those nifty little tricks that can help you make the most of your body’s current exercise limits.

Smart ways to increase your amount of exercise (when you’re ready)

At first, simply increase the length of your exercise periods in order to increase your overall amount of exercise.

For example, if you’re currently practicing three five-minute walking periods broken up by two five-minute rests, increase one of your five-minute walking periods to six minutes.

Another way to increase your overall amount of exercise is to include a short period of more intense exercise into the workout you are already doing. For instance, if you are already walking for twenty minutes, build into your walk five to ten seconds of faster walking or even jogging.

Again, remember to adhere to the five guidelines on How to begin exercising without harming your body.

Choose an exercise that’s right for you

In general, gentle types of exercise are best for you.

Your fitness regime should ideally encompass three types of exercise. Although your body may not tolerate the third type, aerobic exercise, I still recommend that you carefully give it a try it at some point.

The easiest way to cover all types of exercise is to practice yoga or Thai Chi.

Just in case you want to depart from the simple solution of practicing yoga or Tai Chi, let me explain in more detail the types of exercise people with ME/CFS need to engage in to best take care of their body:

Just in case you want to alternate your fitness regime from the simple solution of doing yoga or Tai Chi together with walking or slowly riding your bike, let me explain what types of exercise people with ME/CFS need to engage in to best take care of their body:

  • Flexibility: Stretching can reduce stiffness and pain, and keep your body flexible. Check out this excellent video (part one, part two) to learn a gentle stretching program designed specifically for people with ME/CFS.
  • Strength: Practicing strength exercises will counteract the deconditioning of your muscles caused by inactivity.You don’t need weights to start out with strength exercises. A simple form of strength exercise is to stretch your arms out toward the sky, your hands forming and releasing a fist three times. Do this once every 90 minutes and you’re already making a huge difference for your body’s strength.A great exercise for strengthening your core is a posture called plank (click here for picture). Plank is considered a demanding workout by some, but you can make it easy if you do it just a couple of seconds at a time.
  • Aerobic Exercise: This type of exercise, which can reduce fatigue and pain by strengthening your heart and lungs, can be difficult to engage in for many people with Chronic Fatigue Syndrome. The reason for this is that you need to stay within the limits of your safe heart-rate (the one you defined earlier in this lesson), which prevents you from entering the realm of aerobic exercise.Your best bet to train your aerobic system is to start by going on walks or slow bike rides, monitoring your heart rate to ensure that it stays within your safe limits. Then, gradually and slowly increase the lengths of your daily walks or bike rides. Remember to still adhere to the five guidelines from the How to begin exercising without harming your body section of this lesson to ensure that you won’t overdo it.

Example:

Choose from this list of exercises when you are just starting out.

Inspired by what the experts from the Workwell Foundation recommend to their ME/CFS patients, the types of exercise listed here go from “as gentle as possible” to gradually more demanding.

Diaphragmatic breathing. This is an excellent exercise to start out with, regardless of your current level of functioning. Since it requires minimal exertion and can be practiced lying down, you can practice it even if your current level of functioning is low. If your level of functioning is higher, you will still benefit from this exercise, as it calms your nervous system, relaxes your muscles, and improves oxygen supply to your body’s tissue. Learn diaphragmatic breathing in this video.

Just practice diaphragmatic breathing for a few minutes a day several times a day, and you are well on your way with exercise.

Lying-down yoga or leg-press. Once you can practice diaphragmatic breathing without worsening your symptoms, there are many types of supine (lying-down) exercise you can graduate to. I recommend that you start with this gentle supine yoga sequence (video) and, if you can do it without worsening your symptoms. With time, you might want to begin practicing this supine leg-press (video) as gently as possible.

Chair Yoga. The next step up from exercising lying down is to exercise sitting on a chair. I recommend you begin with exercises from this mindful chair yoga sequence (video).

How to make exercise fun and easy

Making exercise fun and easy is essential because it ensures that you’ll stick with it once your initial surge of motivation fades. Let me share with you a few simple techniques that have helped me overcome my resistance to exercise:

Think in “Mini Steps”

Thinking in mini steps is one of the most powerful mindsets I’ve discovered so far. It can help you to infuse any activity, including exercise, with ease.

Here is why thinking in mini steps works: Since we as humans tend to avoid discomfort, our mind tries to steer us away from it, especially if this discomfort is expected to last an extended period of time. In real life you’ll notice this human tendency when you feel resistance to big tasks (for someone with ME/CFS most tasks seem big), such as going outside and taking a walk.

The way for us to work around this deeply rooted human behavior pattern is to split big, seemingly onerous tasks into tiny, easy, and effortless mini-step tasks.

Example:

I cringe at the idea of having to go for a walk or bike ride for thirty minutes. Thoughts that pop into my mind are, “This will be uncomfortable! I don’t have time for this! It will be the worst thirty minutes of my life!”

I know it’s my primitive reptile brain speaking, so I don’t buy into it and instead find a way work around it. I split the task into small enough tasks to make each mini-task feel easy. “All I have to do it put on my shoes!” Sure, even my amygdala agrees that that’s doable. “Once I have my shoes on, all I have to do is step outside the door.” No problem! “Then all I have to do is take one little step, and one deep, relaxed, happy breath in.” Wow, this is actually fun!

Next, I take one more mini step, another one, and soon I’ve gotten fifty yards into my walk.  A few minutes later I’ve overcome my initial resistance to walking altogether and have begun to enjoy it as something that is not even a chore, but as something that’s fun.

The key is to focus your mind just on the next mini-step and forget about the rest. When you do this, you will notice that most of your activities, including exercising within your limits, become easier.

Set out to reach a motivating destination

I love to get a lunch sandwich at Subway and to work in the inspiring atmosphere of the UC Davis campus. When I set the intention to reach those destinations, I begin to better enjoy the walk or bike ride required to get there.

Listen to music or an audio book

In addition to making your walks more fun, listening to an audio book, can also keep your mind calm and focus during your walk. I’m currently listening to the free librivox.org recording of The Adventures of Tom Sawyer, and I love it.

Leverage the herd instinct and power of community

I’ve developed the Online Self-Care Hour to help people like you and I get a sense of community on their healing journey. It’s unlike any other support group you’ve experienced before.

Instead of having to go to a place you can tap into the OSCH from your home.

Instead of having to sit at your computer to benefit from the community, you can get the support you need on your phone while you are getting ready for or are engaging in your exercise.

To learn more about the Online Self Care Hour, click here.

Get help from a physical or occupational therapist

When you start an exercise program, consult with your doctor, as he or she may refer you to a physical or occupational therapist. These exercise specialists can provide useful support in getting you started right with exercise.

How to sidestep my exercise mistakes

Up until 2010, I held a rock-solid conviction that any exercise would harm my body. Having read in forums about people’s bad experience with exercise had led me to the false conclusion that any exercise would be bad for me.

This changed when my wife finally succeeded in getting me to join her gentle yoga class. During the class, I was still freaking out at first when I noticed myself sweating for the first time in years.

I expected my symptoms to worsen after the class–but they didn’t. Instead I felt good! As you can imagine, I was very excited t hat my body was healthy enough to engage in light physical activities again.

For the past three years, from early 2010 until early 2013, even though I knew that a certain level of exercise was safe for me, I didn’t give it the attention it deserved. Yes, I would exercise sporadically, but I never dedicated a daily time slot just to exercise. I didn’t because, first, I saw exercise as a struggle and, second, was unaware of its great potential to propel me to the next level of my recovery.

Once I saw the importance of exercise and started to exercise regularly, I noticed many benefits, such as decreased fatigue during the day and better sleep at night. Now I wish that I had introduced exercise into my recovery regime two or three years earlier.

To avoid my mistake, I urge you to get started with a safe level of exercise immediately. Read this next part to learn how to get started with exercise in just a few simple steps.

Get started with exercise in four simple steps

  1. Choose your exercise. In the How to begin exercising without harming your body section of this lesson, you defined your safe heart rate and had a guess at how much exercise your body can tolerate (If you haven’t yet, you can do it in no time here). The only task remaining before you can get started with your workout is to pick an exercise during which your heart-rate stays within your safe limits.
    Then just do your chosen exercise for as long as you determined as safe for you.
Example:

Claire, who is starting out bed-bound, tolerating very little exercise, might begin her exercise experiment with the simple routine of stretching her arms out and forming and releasing her hands into a fist three times. This should take no longer than twenty seconds, and she can likely do it for at least three times a day. From this safe starting point, Claire can now gradually increase her exercise for as long as it doesn’t worsen her symptoms.

  • Track your activity using a pedometer, heart-rate monitor, and activity diary. Ideally you’ll use at least a heart-rate monitor and an activity diary. With the heart-rate monitor you can gauge the intensity of your workouts and with the activity diary you can discover the effect of exercise on your condition.
  • Schedule a time with a coach or other member of your support team to evaluate your activity tracking sheet. It will be time well spent and you deserve to get help with this important task.
  • Remember to apply the items from the How to make exercise fun and easy section of this lesson Making exercise fun and easy will be crucial to your keeping it up.

By making exercise safe, easy, and fun, I hope that you’ll feel confident and motivated to give your body the workout it needs to hold on to and eventually regain its strength. May your body reward you for taking good care of it with a higher level of fitness, reduced fatigue, and improved mood!

In better health,
Johannes' Signature

P.S.

If you’ve got here without being subscribed to the free CFS Recovery Project E-Course, you’re missing out. This is lesson #10 on how to reach your maximum health and happiness potential if you have Chronic Fatigue Syndrome or Fibromyalgia. If you’re not already a subscriber, click here to learn more.

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