How Physical Therapy Can Help Manage Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that affects
the body's collagen; one of the key components that provide strength and structure to
skin, joints, and blood vessels. While the hallmark of EDS is joint hypermobility, the
reality for those living with it is much more complex. Many people with EDS also
experience widespread pain, chronic fatigue, frequent joint subluxations or dislocations,
and co-occurring conditions like Mast Cell Activation Syndrome (MCAS), Postural
Orthostatic Tachycardia Syndrome (POTS), chronic fatigue, and more.
Physical therapy can play a critical role in managing EDS, but it must be approached
with a deep understanding of the condition’s complexity and how it interacts with the
rest of the body. A tailored, patient-centered therapy plan can offer significant benefits,
including improved joint stability, reduced pain, and greater independence in daily
activities.

Strengthening and Stabilization

Because connective tissues in EDS are more elastic and less stable, the body often
relies heavily on muscles to support the joints. However, muscle weakness is common,
especially after repeated injuries or long periods of reduced activity due to pain or
fatigue. A physical therapist can guide patients through initial low-impact strengthening
exercises that target the muscles surrounding unstable joints. The goal isn’t to “tighten
up” joints, but to improve functional strength so the body can move more safely and
efficiently.
Exercises may start gentle, controlled, and performed with a focus on precision and
alignment, emphasizing quality over quantity. It’s important to gradually build up in
exercise intensity and endurance, while working towards each patient’s individual
fitness goals.

Managing Chronic Pain and Fatigue

Chronic pain is a daily reality for many people with EDS. It may stem from joint
instability, muscle tension, or nerve compression. Physical therapy can help relieve
some of this pain through gentle manual techniques, posture retraining, and movement
education.

Fatigue in EDS is not just about “being tired.” It can be profound and debilitating,
especially when compounded by conditions like POTS or chronic pain. Therapy must
account for the patient’s energy levels, using a pacing approach to gradually build
endurance while avoiding post-exertional crashes. Sessions may include breathing
exercises, mindfulness techniques, and education on energy conservation.
Addressing Dysautonomia and POTS

Many people with EDS also experience dysautonomia, a dysfunction of the autonomic
nervous system. One common form is Postural Orthostatic Tachycardia Syndrome
(POTS), where standing up leads to a rapid increase in heart rate, dizziness, and
sometimes fainting.

Physical therapy can support POTS management through guided recumbent or semi-
recumbent exercises, like recumbent biking or swimming, to improve cardiovascular
conditioning in a way that’s more tolerable. Over time, this can help reduce the severity
of symptoms, alongside medical treatment and lifestyle adjustments. Therapists can
also help with positional training and strategies to transition between lying, sitting, and
standing more safely.

Supporting Proprioception and Balance

EDS often affects proprioception, or your body's ability to sense where it is in space.
This can make walking, balance, and even daily movements more difficult or risky.
Physical therapists can incorporate balance training, coordination drills, and functional
movement patterns to help retrain the body and reduce the likelihood of falls or injury.

The Importance of Pelvic Floor Physical Therapy

Pelvic floor dysfunction is often overlooked in individuals with Ehlers-Danlos Syndrome,
but it’s incredibly common due to the laxity of connective tissues that support pelvic
organs. Symptoms can include pelvic pain, urinary incontinence, constipation, or a
feeling of pressure or instability in the pelvis. A pelvic floor physical therapist trained in
working with hypermobility disorders can help address these issues through gentle,
individualized strategies. This may include breathwork, coordination exercises, and
techniques to improve pelvic stability without over-recruiting surrounding muscles, and
always with an emphasis on comfort, safety, and pacing.

Navigating MCAS Sensitivities

Mast Cell Activation Syndrome is another condition commonly seen in people with EDS.
It can cause allergic-type reactions to triggers like pressure, temperature changes, or
chemicals, or even exercise itself. Physical therapists working with EDS and MCAS
need to be especially mindful of environmental factors and physical inputs that might
provoke symptoms.
This may involve adjusting temperature, using hypoallergenic equipment, choosing
gentle manual techniques, and scheduling rest breaks to avoid overstimulation. Open
communication between the patient and therapist is crucial to identify and manage flare-
ups effectively.

Finding the Right Therapist

Not all physical therapists are familiar with the nuances of Ehlers-Danlos Syndrome and
its related conditions, so finding someone with experience, or a willingness to learn, is
essential. A compassionate, flexible, and knowledgeable therapist can make all the
difference.
Look for someone who listens, respects your boundaries, avoids aggressive stretching
or manipulations, and understands the importance of pacing. A trauma-informed,
a collaborative approach is especially helpful when working with such a multi-systemic
condition. At Women in Motion we would love to support you, and have one therapist with extensive experience. 

Moving Forward, One Step at a Time

Physical therapy won’t “cure” EDS, but it can empower people living with the condition
to manage symptoms more effectively, reduce injury risk, and regain a sense of agency
over their movement and function. Progress may be slow, and setbacks may happen,
but with a supportive therapist and a plan tailored to the individual, healing becomes a
more achievable goal.

If you or someone you love is living with Ehlers-Danlos Syndrome, consider exploring
physical therapy as part of your care team. With patience, education, and the right
support, a more comfortable and capable life is possible.