FSHD Brochure_

Physiotherapy for FSHD
4 Treatment
The role of the physiotherapist
The physiotherapist guides the patient in the
process of learning to cope with his or her
limitations in activities and participation in daily
life and optimising and preserving body functions
as much as possible. The physiotherapist cannot
influence the disease process itself. However,
general physical condition and coping with fatigue
and pain are aspects that can be influenced by the
physiotherapist. Due to the progressiveness of
FSHD, it is advisable for the physiotherapist to act
proactively and to discuss with the patient in good
time the potential problems that could result from
the disease in future.
complaints. Entrapment neuropathies can also
develop between pectoralis minor and thorax. In
addition, in some people with FSHD, subluxations
of the glenohumeral joint may develop. In cases
of shoulder complaints and FSHD, always be alert
to other possible causes, such as thoracic outlet
syndrome (TOS syndrome) or plexus lesion.
Refer the patient for specific treatment advice
on shoulder problems to a team of specialists in
muscle diseases (see section 5).
The patient as partner
Decisions that affect a patient’s treatment, health
and quality of life are made through a shared
decision-making process between healthcare
provider and patient. The physiotherapy
treatment of FSHD is therefore also done in close
consultation with the patient. An analysis of the
complaints is done together with the patient.
Based on the patient’s wishes and request for help,
joint treatment goals are formulated. In addition,
attention to the psychosocial influence of FSHD
is also important in treatment. Depending on the
patient’s wishes, the physiotherapist can include
the following aspects when considering treatment
and/or treatment goals.
Possible treatment goals for the
physiotherapist
Movement control: treatment of shoulder
problems
The abnormal position and movement of the
shoulder blades, so-called scapular dyskinesia
(SD), are amongst the most striking clinical
features of FSHD. This creates shoulder problems
that are an important part of the limitations that
affect the lives of people with FSHD. The shoulder
blade is mainly dependent on the timing and
strength of the functioning trapezius muscle and
serratus anterior muscle for its stabilisation on
the thorax. Based on the experience of experts, it
appears that the serratus muscle often fattens and
atrophies. As a result, the scapula typically tends
to rotate sharply downward and develops anterior
tilt. This can cause overloading of the proximal
scapula muscles and associated neck and shoulder
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