Treating Chronic Fatigue Syndrome (ME/CFS): '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
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 is associated with
any physical activity that causes their heart rate to increase, 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 characterized 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 Energy Envelope) patients that carefully manage their exercise program can increase
their stamina and reduce their pain.
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Begin slowly with seated stretching, relaxation and
breathing exercises. After several weeks of these graduate to standing stretches
or to strengthening activities.
-
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.
Lifestyle I: Foundation
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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.
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.
Hotpoint: Research studies have shown again and again that the real
abnormalities in ME/CFS show up when the system they’re examining is put under
‘stress’. This holds true across endocrine, immune and
nervous system tests; stress - whether it’s physical, mental or emotional -
equates with reduced performance in this disease. Some
researchers, in fact, are asking that all research studies stress their chronic
fatigue syndrome patients before they test them.
Dig Deeper! Check out
"Cracking the
Foundations" for research suggesting many ME/CFS patients may have distinct
metabolic limits.
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.