‘Exercise’

“The key is patience–not doing too much at once and learning not to exceed the threshold that results in “payback” symptoms…Today, 9 years after onset of CFS…. I HAVE BICEPS.. I have lost 15 unwanted pounds. I look better and I feel better in some ways. Besides adding stamina and strength, exercise has reduced my pain”

Linda Milne, disabled 64 year old CFS patient

Exercise in Chronic Fatigue Syndrome (ME/CFS)

Finding Your ‘Exercise’ Safety Zone – Post-exertional malaise or a severe increase in symptoms (called a ‘crash’) after even mild exercise is a hallmark symptom of chronic fatigue syndrome (ME/CFS). Plus ‘exercise’ is a loaded word for ME/CFS patients some of whom have been exposed to damaging exercise programs or who can hardly walk down the block without getting symptomatic. Indeed exercise in ME/CFS  can refer to any physical activity that causes increased heart rate such as walking, cleaning the house, going to the store – for some people, just getting up to go the bathroom.

One can make good case that the inability to physically or mentally or emotionally ‘exercise’  is the essential problem in this disease. Still, all patients should ‘exercise’ or engage in activity to the extent that they can without causing their symptoms to flare up. Why? Because a complete lack of exercise takes a high toll on the body – contributing to cardiovascular problems, difficulty standing, osteoporeosis, joint problems, etc. which can add greatly to the burdens of this disease.

Despite the problems with ‘exercise’ Dr. Lapp states that exercise and activity are one of the first things he talks about with his patients. He believes its critical that ME/CFS patients walk the ‘narrow road’ between too little and too much exercise.

But how to exercise in a disease defined by post-exertional malaise?

The Foundation of a Chronic Fatigue Syndrome (ME/CFS) Exercise Program

The key to a successful exercise program is staying below the ‘threshold point’ at which exercise is transformed from a beneficial activity into a pathological one. While being cognizant of the fact that many people with this disorder already exceed their activity thresholds on a daily basis (see Pacing) patients that carefully manage their exercise program can increase their stamina and reduce their pain.

  • Warm up First!  with seated stretching, relaxation and breathing exercises. In Figuring out Fibromyalgia, Dr. Liptan states that 15 minutes of slow warm up has ‘made a huge difference’ in how much exercise she can tolerate. She keys warming up a ‘key component to helpful and effective exercise’. 
  • Exercise Gently – A CFS patient  reports using the ‘Intu-flow‘ exercise approach, which has been referred to as ‘yoga in motion’ or ‘high-tech Qigong’  he is able to exercise without pain and doesn’t need pain-killers to sleep at night. 
  • Progress gradually with strengthening activities. Begin with very low weights, light stretch bands or body weight. Strength training should initially be limited to 30-60 seconds with at least I minute of rest in between and a maximum of 3-5 intervals per session. Start with 2-4 repetitions and build up to a maximum of eight. The total amount of activity in a single session should not exceed 20 minutes. The CDC recommends CFS patients rest for 3 minutes for each minute exercised.
  • Be careful with cardiovascular conditioning. Start with a slight increase of your daily activities. Increase slowly and find a sustainable regimen. Because exercise in water creates a pressure gradient that may assist with circulation and is less impactful on the joints hydrotherapy is a good option. (See Using a Heart Monitor To Stay Within Your Aerobic Safety Zone below. )

Helpful Hints

  • Don’t ‘go for the burn’. Instead of ‘No pain, no gain’ CFS patients should follow the adage ‘No pain, no pain’.
  • Drop the Word Exercise. ‘Exercise’ with all its connotations should be dropped in favor of less heavily charged ideas such as ‘keeping ones muscles from becoming weak’, ‘staying loose and flexible’, and ‘building up ones conditioning’. CFS patients should also expand the definition of exercise to include any kind of physical activity such as walking, pulling weeds, doing the dishes, etc.
  • Break up the exercise period. CFS patients are far more tolerant of five three minute exercise periods than one fifteen minute one. Try the ‘Five up, five down’ approach; alternating five minutes of activity with five minutes of rest. CFS patients should take at least one rest day between ‘workout’ days’ and be ready to allow for more if necessary.
  • Don’t push too hard. All negative symptoms caused by exercise should be back to baseline the next morning. Each step of the conditioning regime should plateau at for several weeks at a certain level before moving to the next level.
  • Be flexible. If you have problems standing (orthostatic intolerance) do your conditioning while seated or supine or in the pool or on a stationary bicycle.
  • Focus on the abdominals. The abdominal muscles are the foundation of the body. Strengthening the abdominal muscles can help relieve back pain and improve circulation.

Use a Heart Monitor to Stay Within Your Aerobic Safety Zone – Researchers have found that a significant subset of ME/CFS patients appear to have a metabolic dysfunction that inhibits their ability to exercise. These researchers are able, using sophisticated exercise tests, to chart the heart rate at which aerobic activity begins to ‘go bad’. Once they have their target heart rate patients can use inexpensive heart monitors to stay below this heart rate. Many are able to increase their health and their ability to exercise by rigorously staying within their aerobic safety zone.

Learn how in the video series from ME/CFS Community Center below

Many patients don’t have the chance to go throw expensive aerobic testing to determine their safe heart rate but a general guideline has emerged. & Each person’s maximum safe heart rate is different but Eleanor Stein, M.D. reports that 120 beats/minute is a good place to start. While doing this try the five up, five down method; five minutes of activity up, five minutes of rest, five minutes of activity, five minutes of rest, etc. Many people can increase both the amount of exercise and some can even increase the intensity (ie heartrate) of exercise they can tolerate without flaring if they follow this approach.

Conclusion: Exercise in CFS will always be problematic to some degree but researchers and physicians are devising ways CFS patients can glean benefits from exercise while sidestepping its costs.

__________________________

CFS and the Exercise Conundrum, Lucinda Bateman, M. D. p>

The ‘Skinny” on Exercise and CFS. The CFS Research Review. Summer 2006. Vol. 7, Issue I, 8-10, A publication of the CFIDS Association of America.

A Realistic Approach to Exercise for CFS Patients By J. Mark Van Ness, PhD, Christopher R. Snell, PhD, and Staci R. Stevens, MA.

3 comments

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jennifer July 26, 2011 at 9:52 pm

I started doing water aerobics last year. It is the first time that I have been able to exercise without crashing since I got sick 14 years ago. I think that because you can tailor how hard you work in the water, it makes it ideal for CFIDS/ME patients. I started out slow and have built up in my intesity. It also helps boost my mental state. This is the first time that I have had energy from working out – I feel good when I am done. WOW!!!!!! I actually got certified online to teach because I became such a fan of it. It just amazes me that I have been able to finally exercise 2 times a week for 50 minutes each time. A true miracle for CFIDS/ME people.

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Cort July 27, 2011 at 6:27 am

Congratulations Jennifer. That is a lot of exercise! (for someone with CFS, anyway :)). How slowly did you start out? Did you make sure that you didn’t have crashes afterwards?

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Linda November 13, 2014 at 3:26 am

I have had CFS for 15 years, also, fibromyglia, although I think I have had it longer, as my doctors kept telling me for years that I just had the flu. DUH. I also am diabetic, have restless leg syndrome, and very severe allergies. Exercise had been a lost cause with me, as with all this, sometimes brushing my teeth is a major accomplishment. I used to do water exercise, which I loved, but the gymn’s with pools as very few and kept getting more and more expensive. Public pools will not allow floatation devices, which I need. I learned to this in a pain clinic that I was in for eight months in 2002. I have a recumbent bike which I use when I can and when my legs to not hurt too bad. I always have pain to some degree, the weather really aggravates the restless leg.
Ok, so this is my biggest problem, my doctors tell me to exercise, and I want to and know I need to, but they are no help in helping me a plan I can tolerate. I don’t know where to begin and I am very frustated about living the rest of my life with no energy, no stamina and being too tired to move. I am 64 years old and have always exercise up until the last 2 years when everything just seemed to get worse. I have learned self-hypnonis to help with everything, trigger point massage and have an ETPs machine which I don’t use often as I seem to be electrical already. I know this is long, but I really need some sound information. Thank you, Linda

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