Last week I had written a post about What Do You Do For Exercise? and one of my regular visitors here provided some information by the CDC on exercising with Chronic Fatigue Syndrome.
I can’t stress it enough that I am not a doctor so what I wrote about exercising is what I am trying for myself and don’t feel that you have to do the same thing. I am just one who gets tired of being down and sick and I personally think that not exercising at all may be making our health worse. I truly believe that even though we are chronically ill it doesn’t mean that our lives are over and that we can’t do anything that “normal” people do, including exercise. We just have to modify what we do and how we do it and learn what our limits are.
You need to talk to your doctor and figure out for yourself though what works best for YOU and for YOUR SITUATION.
Here is what the CFIDS Association has to say about exercising with CFS. This information is from 2000:
A Realistic Approach to Exercise for CFS Patients
By J. Mark VanNess, PhD,
Christopher R. Snell, PhD,
and Staci R. Stevens, MA
Drs. VanNess and Snell are professors with the Depart-ment of Sport Sciences at the University of the Pacific. Ms. Stevens is an exercise physiologist and chair of the Workwell Foundation, an organization specializing in helping people cope with chronic illness.
Since chronic fatigue syndrome (CFS) is characterized by debilitating malaise and the inability to perform physical activity, it is often assumed that patients should begin an exercise training regimen to increase their ability to function. However, the ability to generate energy through aerobic energy pathways appears to be dramatically impaired in CFS patients and post-exertional malaise can extend for days. Because of this, aerobic-type exercise may be inadvisable for the CFS patient.
This presents something of a problem, as the patients inability to exercise leads to further deconditioning. Practitioners are often contradictory concerning exercise for persons with CFS: some recommend aerobic exercise in an effort to recondition the patient, while others decry any physical activity because of the negative impact on their patients. This raises questions concerning the etiology of what is essentially a cycle of deconditioning for CFS patients and what, if anything, can be done to reverse the worsening of symptoms many patients have when they exercise.
There are a number of theories on why CFS patients are unable to perform even the simplest of tasks without becoming fatigued. Several studies indicate moderately reduced oxidative capacity in CFS patients, which may provide an important clue to the origins of this fatigue.1
Our own research has shown significantly lower exercise duration and peak oxygen consumption in a subset of CFS patients positive for the RNase L enzyme compared to CFS patients negative for the enzyme.2 Presence of the RNase L enzyme is believed to be connected to an immune system dysfunction that may interrupt energy production, reducing aerobic work capacity.3
Any reduction in aer-obic work function due to impaired oxidative function may lead to an abnormal reliance on anaerobic energy pathways during exercise. Therefore, what may be an aerobic exercise regimen for healthy individuals could actually be an anaerobic activity for CFS patients.4
Even activities of daily living, like vacuuming, may exceed the limited aerobic capacity of CFS patients. The rapid onset of fatigue and extended recovery time following physical activity may be explained as an expected reaction to intense anaerobic activity.
Our research shows significantly impaired oxygen consumption levels (according to AMA guidelines) in persons with CFS during treadmill exercise tests. Although the subjects volume of inspired air during exercise is normal, the oxygen they were able to use from that air was diminished.5 These findings suggest that exercise testing could be used to both diagnose and assess the level of disability in CFS patients.
A possible solution to this problem may be to prescribe exercise for CFS patients with the acknowledgment that performance will rely heavily on anaerobic metabolism. This means avoiding extended periods of aerobic activity and alternating short periods of resistance exercise or stretching with frequent rest breaks.
Therapeutic exercise designed from this perspective aims to increase strength and improve flexibility rather than reconditioning the aerobic system. Such a program would have the added goal of reducing muscle pain, improving cognition and providing a sense of accomplishment and well-being.
If exercise is to prove beneficial for CFS patients, it is important that the exercise prescription is one they can accomplish. This means starting slowly, gradually increasing the intensity, and most important, allowing adequate time for recovery between sessions. The following guidelines are intended as general recommendations for CFS patients without other health conditions. It is advisable for patients to perform these exercises under the guidance of a qualified physical therapist or exercise physiologist sensitive to the needs of patients with CFS.
Clinical guidelines
Appropriate exercise for CFS patients is exercise that they recover from. Therefore, the main goal of the program is not to develop aerobic exercise capacity, but rather to increase the patients ability to utilize anaerobic energy systems and then to recover in a reasonable length of time.
Click HERE to see the Cardiopulmonary Exercise Testing in CFS patients.
It is also important that exercise programs be developed based on CFS patients present abilities, not on what they were able to do prior to having the disease. Range of motion exercises, such as lying hamstring stretch, lateral bends, and lower back stretchers, can improve flexibility, decrease joint pain and enhance overall functioning. Light resist-ance exercises, such as modified push-ups, step-ups, and flex-knee crunches, can help to maintain and build strength.
Each exercise session should be comprised of very brief periods of activity (30 seconds or less) followed by at least 1 minute of rest or until complete recovery is achieved. Total periods of activity in a single session should not exceed 20 minutes.
A guiding principle to any exercise regimen is the necessity of allowing adequate time for recovery so that anaerobic metabolites, such as lactic acid, are removed to facilitate further exercise. If excessive fatigue ensues, decrease the number of exercises or their duration.
Determining whether a CFS patient has benefited from exercise requires a different assessment approach than with individuals suf-
fering from other illnesses. A return to pre-morbid fitness levels may not be pos-sible for CFS patients, but improvement is possible. Practitioners, therefore, should have a clear picture of a patients pre-exercise condition (not pre-morbid condition) and compare it to post-exercise accomplishments, such as whether patients can now independently perform tasks like vacuuming, doing the laundry, washing the dishes, etc., on a daily basis, with shorter rest periods and without relapse, may be just as important as counting how many times they can perform a particular exercise or assessing their cardiovascular condition.
References
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McCully K et al. Impaired oxygen delivery to muscle in chronic fatigue syndrome. Clin Science. 1999; 97: 603-608.
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Snell CR et al. Comparison of maximal oxygen consumption and RNase-L enzyme in patients with chronic fatigue syndrome. JCFS. (In press.)
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DeMeirlier K et al. A 37kDA 2-5A binding protein as a potential biochemical marker for chronic fatigue syndrome. Am J Med. 2000:108: 99-105.
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Clapp L et al. Acute effects of thirty minutes of light-intensity, intermittent exercise on patients with chronic fatigue syndrome. Phys Therapy. 1999; 79(8):749-756.
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VanNess J M et al. Exercise testing in patients with chronic fatigue syndrome (CFS)Diagnostic tool? Fed Amer Soc for Exp Bio J. 2000;14(4): LB41.
This is what the CDC has to say about exercising with CFS:
Managing Activity and Exercise
Avoiding Extremes
For patients with CFS, learning to manage activity levels is key to managing the illness itself. This requires a new way of defining exercise. While vigorous aerobic exercise is beneficial for many chronic illnesses, CFS patients can’t tolerate traditional exercise routines. Exercise programs aimed at optimizing aerobic capacity are not recommended.
The majority of people with CFS are affected by postexertional malaise, which is defined as an exacerbation of symptoms following physical or mental exertion, with symptoms typically worsening 12-48 hours after activity and lasting for days or even weeks. It’s important, however, not to avoid activity and exercise altogether. Such avoidance leads to serious deconditioning and can actually worsen other symptoms. It’s also important not to engage in an endless “push-crash” cycle in which patients do too much, crash, rest, start to feel a little better, do too much again, and so on.
Instead, CFS patients must learn to pace activities and work with their health care professionals to create an individualized exercise program that focuses on interval activity or graded exercise. The goal is to balance rest and activity to avoid both deconditioning from lack of activity and flare-ups of illness due to overexertion. Effective activity management may help improve mood, sleep, pain and other symptoms so patients can function better and engage in activities of daily living.
Developing an Exercise Program
It is imperative that any activity plan be started slowly and increased gradually. When beginning an activity program, some CFS patients may only be able to exercise for as little as a few minutes Patients who are severely deconditioned or who are caught in the “push-crash” cycle should limit themselves to the basic activities of daily living – getting up, personal hygiene, dressing, essential tasks – until they have stabilized.
Several daily sessions of brief, low-impact activity can then be added. Simple stretching and strengthening exercise using only body weight for resistance is a good starting place for most people with CFS. All exercise needs to be followed by a rest period at a 1:3 ratio, exercising for one minute, then resting for three minutes. These sessions can be slowly increased by one to five minutes a week as tolerance develops.
Daily exercise can be divided into two or more sessions to avoid symptom flare-ups. Activity should be intermittent, brief, spread throughout the day and followed by rest. If patients experience a worsening of symptoms, they should return to the most recent manageable level of activity.
Strength and conditioning exercises are an important component of the overall activity program. Standard rehabilitative methods, such as resistance training and flexibility exercises, may help improve stamina and function, increase strength and flexibility, reduce pain and increase range of motion.
Activity should begin slowly with simple stretching and strengthening exercises. Examples of functional exercises include repeated hand stretches, sitting and standing, wall push-ups or picking up and grasping objects. Patients can begin with a set of two to four repetitions, building to a maximum of eight repetitions. Once this stage is mastered, resistance band exercises can be added to build strength and flexibility. Patients should be careful to adhere to the principle of brief intervals of exercise, followed by adequate rest, to avoid postexertional malaise.
Severely Ill Patients
A subset of people with CFS are so severely ill that they’re largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point patients can handle essential activities of daily living-getting up, personal hygiene and dressing-is the next step.
A realistic goal with severely ill patients is focusing on improving flexibility and minimizing the impact of deconditioning so they can increase function enough to manage basic activities.
Nancy says
Hi Sandy – This is a really good post. I am actualy at the level of still not being able to get showered and dressed each day.
I was reading back over my comments on the exercise post and I thought I had really lost my mind. I guess you have more than one “Nancy” posting, as I know I didn’t post the article on the CDC and exercise. For a minute, I had myself thinking, “Wow, am I now posting stuff in a mental black out without it being alcohol induced?” lol No drinking for me these years.
But I guess I’m not the only Nancy with these crappy illnesses.
I actually had a flare from the stupid 3 minutes for 3 days. It’s really incredulous. So, back to step one for me.
Sandy Robinson says
I’m sorry to hear that Nancy. If you are having a flare exercise will not be beneficial during that time.