Rehabilitation of the Patient with CFS
By Sue Ann Sisto, MA, PT
Traditional physical and rehabilitative therapy has largely been unsucessful
treatment of chronic fatigue and immune dysfunction syndrome (CFIDS). This is likely related to the relapse
following exertion that is a hallmark of the disease.
Sue Ann Sisto and her colleagues evaluated
CFIDS patients and developed a specialized physical therapy-based rehabilitation program which responded
to the unique abnormalities in posture, breathing and exercise response they observed. This program
emphasizes low load, low repetition strengthening exercises performed several times a day Breathing exercises
are a key part of the therapy, both to correct abnormal breathing patterns and to promote relaxation.
Although this rehabilitation program does not treat the
elusive cause of CFIDS, nor does it begin to approach a cure, it may relieve
some of the misery associated with the disease.
Reprinted with permission by The Haworth Press, Inc., 10 Alice Street, Binghamton
10304, from The fournal of Chronic Fatigue Syndrome, Vol. 1, #314. Subscription price $36.00 per
Originally published in NJ Rehab Magazine, March
Under the direction of Thomas Findley,
MD, PhD, Kessler Institute for Rehabilitation's research department developed a collaborative relationship
with the Veterans Administration Medical Center's (VAMC) research laboratory in East Orange, New Jersey.
The neurologist/researcher at VAMC, Benjamin Natelson, MD, has an established practice of chronic fatigue
patients. Dr. Natelson was curious as to whether
rehabilitation was appropriate for these individuals. After having the
opportunity to observe a few CFS patients, it was apparent that these
individuals could benefit from some physical therapy (PT).
CFS Program: A Collaborative
The Role of Physical TherapyThe PT evaluations included
the review of extremely long,
complicated and disorganized medical histories. They represented the
hopelessness of these individuals in not finding a cure for their relentless
fatigue, and very little if any recognition from most primary physicians that
their symptoms were organic in nature. Although it was not always easy to
extrapolate meaning from these histories, it appeared that the time taken to
obtain this medical information was somewhat therapeutic for the CFS patients.
It was evident that by just listening, the patients experienced a sense of
relief. They then seemed to discover a new sense of motivation and could better
concentrate on getting well.
The objective component of the PT evaluation revealed poor sitting posture including
elevated protracted shoulders and reversed lumbar curve. Manual muscle testing did not reveal significant
isolated static muscle weakness as a rule. Activities which required repeated movements over time, however,
were limited in duration and resistance tolerance. Sensation testing revealed a hypersensitivity to deep
pressure in certain key repeatable locations such as the iliac crests, pectoralis area, trapezii and gastrocnernius
areas. This representation is similar to that seen in fibrornyalgia and is a common sequelae of the illness.
Muscle soreness was sometimes exhibited as overall muscle aches that frequently were without remission
and limited the patient's sleep. Range of motion limitations were not exceedingly pronounced unless the
onset of the illness was many years ago and the inactivity left the individual with
soft tissue shortening, particularly around
the proximal joints such as the spine, shoulders, hips and distally at the
Postexertional fatigue soon became the dominant description as a somewhat traditional
form of strengthening
began, such as two minutes on a stationary bike. The reports after only one session of PT immediately
indicated that this type of intervention was far too vigorous for these patients. It was not at all apparent
to the patients that they were overexercising, but 24-48 hours later they experienced a "setback" or a
relapse of their symptoms, including sore throats, muscle aches and severe fatigue that lasted anywhere
from two days to two weeks.
It became apparent that the strengthening program had to be significantly reduced and
of the program would have to be gradual and based on retrospective reports from the patients as to the
tolerance of each exercise bout. The patients had to be taught how to rely on external
cues such as frequency and duration of exercise, rather than the
internal cues that normal individuals rely on to trigger a need to terminate
exercise. Often when our muscles are tired or
when breathing becomes too difficult, we stop exercise. The CFS patients feel
little or no fatigue during exercise that would indicate [a need] to stop
exercise within appropriate limits.
Probably the most outstanding abnormality in the PT evaluation was the breathing mechanisms
patients. CFS patients breathe in an apical fashion, using mainly the upper thoracic musculature rather
than the diaphragm. They often breathe in a rapid shallow pattern. When asked to breathe using the diaphragm,
these individuals usually find this to be very difficult if not impossible.
For nearly two years, Kessler Institute's PT
treated approximately 28 patients. Although the CFS patients vary extensively as to the severity of their
symptoms, duration of illness and overall support system available to them, there are several core treatment
paradigms that have proven successful. First, breathing exercises are a critical starting point for the
treatment of CFS patients. Here the patient should be taught to breathe diaphragmatically and at
a more closely appropriate rate at least for short bouts in the beginning. Sometimes the patient may need
some soft tissue mobilization of the rib and abdominal musculature to allow for the greatest amount of
expansion during breathing as possible.
While practicing breathing exercises, CFS patients not only learn more appropriate breathing
but also derive a relaxation benefit. Since CFS patients usually exhibit high stress levels due to their
frustration about their illness, they greatly need a mechanism for stress reduction that gives them an
element of control which often they have lost since the onset of their illness. A variety of relaxation
exercises helps with reducing overall muscle soreness as well.
Soft tissue mobilization and stretching to all shortened muscle groups sets the foundation
posture and more balanced strengthening exercises. The strengthening routine should begin with the trunk
and proximal limb muscles such as postural exercises or upright/slouch exercises. These
exercises should be progressed to proximal limb muscles and then finally to equipment workout such as
the treadmill, bicycle and upper body ergonometer. Gymnastic ball exercises with the patient sitting on
the ball seem to be a very successful mechanism for strengthening as well.
principle upon which exercise for CFS patients should be based is low load, low
repetition, to be performed several times a day incorporating slow,
diaphragmatic breathing. Once the patient is comfortable with a set workload,
the number of repetitions should be increased first and the load last. As early
as possible, the training should include functional tasks that the patient can
practice at home, such as climbing steps and carrying groceries.
Overall, there is much to learn and study about the rehabilitation of the CFS patient.
currently being conducted at Kessler Institute and the VAMC to study what the effect of breathing, as
well as other interventions, have on the autonomic nervous system in CFS patients. In the meantime, it
is imperative that these individuals remain as active as possible and follow a well guided and paced exercise
Sue Ann Sisto is affiliated with
the VA Medical Center in East Orange, NJ. She is collaborating with Benjamin
Natelson, MD and his group at the N111-funded New Jersey CFS Cooperative