Ehlers-Danlos syndrome (EDS) is a genetic condition that affects the connective tissues throughout the body. Connective tissues are important structures that hold your body together.

They attach different structures together, cushion joints, absorb impact, protect your organs, and perform other important jobs.

Connective tissue is found everywhere in the body. Although the name may be a little misleading, connective tissue can refer to many different structures, including body fat, bones, cartilage, and even fluids such as blood.

Ehlers-Danlos syndrome affects the body’s ability to produce and process collagen, a structural protein found in skin and other connective tissues. Collagen provides strength and elasticity to connective tissue.

Unfortunately, this means individuals with Ehlers-Danlos have weaker connective tissue, and therefore experience symptoms that affect their skin, joints, muscles, and blood vessels.

Symptoms of Ehlers-Danlos syndrome can vary, as the syndrome is actually a spectrum of 13 connective tissue conditions with different defining factors. Even people with the same type of Ehlers-Danlos may experience different symptoms.

Although there are 13 different types of EDS, many of them are very rare. The most common type is hypermobile EDS (hEDS).

Individuals with Ehlers-Danlos may experience any of the following symptoms:

• Overly flexible joints that are prone to dislocation
• Stretchy skin, which may be unable to support stitches
• Predisposition to bruising, prolonged bleeding, or poor wound healing
• Skin fragility (skin may tear easily)
• Joint and muscle pain
• Chronic pelvic pain
• Prolapse
• Incontinence
• Constipation
• Painful sex
• Fatigue
• Gastrointestinal problems
• Muscle weakness
• And more

As listed above, individuals with EDS have a higher likelihood of pelvic floor dysfunctions such as incontinence, prolapse, and pelvic pain. The pelvic floor supports all of your pelvic organs, and allows for stability and balance for the entire body.

It engages in all sorts of movements and activities, and also allows for functions like urination, defecation, and sexual activity. When these structures and muscles are weak or poorly coordinated, it results in pelvic floor dysfunction.

Pelvic floor dysfunction is common in those with Ehler-Danlos, as the affected connective tissues create weakness in the pelvic floor structures. This weakness translates to weak pelvic floor muscles, joint instability, and pelvic misalignment.

Later in this article, we’ll discuss how both orthopedic physical therapy and pelvic floor physical therapy can address these symptoms of EDS, so stay tuned!

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Ehlers-Danlos syndrome is caused by a genetic mutation. There are various types of genetic mutations that can cause Ehlers-Danlos, although the mutation is not always identifiable in every case of EDS.

In some cases, Ehlers-Danlos syndrome can be inherited. Therefore, having a family history of the syndrome makes you more likely to have it or pass it onto your children.

Although there is no cure for Ehlers-Danlos syndrome, there are ways to manage your symptoms and support a higher quality of life.

This condition affects the connective tissues of the body, and so physical therapy is often a primary form of treatment used to manage symptoms.

Physical therapy for Ehlers-Danlos syndrome may vary from person to person, requiring unique plans of care for each person’s individual needs and symptoms.

Both orthopedic and pelvic floor physical therapy can be beneficial for individuals with the condition. For many with Ehlers-Danlos, physical therapy can provide a better quality of life by supporting and maintaining long-term mobility and function.

Below, we’ll explore how each of these physical therapies can support the symptoms associated with EDS:

Orthopedic Physical Therapy

Orthopedic physical therapy looks to improve comfort, stability, and function for those with EDS by strengthening joints and addressing chronic pain.

Orthopedic treatment for this condition often involves strengthening or endurance exercises, education, pain management, and more.

Individuals with Ehlers-Danlos will need curated treatment plans to avoid injury, overloading, or overstretching during exercise. Some treatment methods commonly used for EDS include:

Strengthening

Strengthening exercises will involve low-impact, low-load exercises that aim to strengthen muscles around joints that may be hypermobile and prone to dislocation.

Your physical therapist will lead you through safe exercises and therapeutic activities that will improve function while being careful not to overstress connective tissues or joints.

These exercises will help build strength and joint stability, lowering the likelihood of joint troubles and relieving pain from muscle spasms, strains, or sprains.

Working closely with a physical therapist is the best way to learn and engage in exercises that are not only safe for Ehlers-Danlos, but also your individual abilities and limitations.

Each and every person’s unique needs will vary, but a physical therapist will be able to curate an exercise routine that works best for you!

Stretching

Stretching can be a beneficial treatment, especially for tight muscles—however, individuals with EDS will need to take extra care when stretching their body, as they are more prone to overstretching.

Your physical therapist can teach you gentle, slow stretching exercises that don’t push you past your personal limits.

Not only can they teach you to stretch correctly based on your unique needs, but they can also correct any muscle imbalances that may create an excess desire to stretch.

Education and Behavioral Modifications

Physical therapists are very knowledgeable about musculoskeletal conditions and the body itself. They can help teach individuals with EDS ways to manage pain at home, avoid movements that may cause pain, and other strategies for symptom management.

For example, poor posture is one simple lifestyle factor that can worsen pain for those with EDS. Your physical therapist can correct your posture to lower the risk of joint pain or instability. This can help relieve pain from excess pressure on your joints.

Physical therapists will be able to teach you strategies to avoid overextension or overloading joints—such as which postures, positions, movements, or activities you should avoid or modify.

They can help ensure you engage in the proper body mechanics for daily tasks, and may assist in modifying those tasks as needed.

If necessary, your physical therapist can suggest mobility aids, supports, or other tools that will help reduce pressure on your joints and allow you to engage in movements safely.

This can include tools or methods like bracing or taping, if applicable to your unique needs.

Joint Mobilization

Some individuals with EDS may benefit from very gentle joint mobilizations, which can help improve joint positioning and relieve pain.

However, spinal manipulation and other more vigorous chiropractic activities may be contraindicated depending on your specific type of EDS.

Hive’s physical therapists are always careful to collaborate with your other primary health providers in order to provide treatment that aligns with your personal care needs.

In fact, the providers at Hive Therapy and Wellness are always ready to collaborate with other healthcare professionals like geneticists, rheumatologists, and pain specialists in order to provide a comprehensive care experience for individuals with Ehlers-Danlos.

Pain Management

Unfortunately, individuals with Ehlers-Danlos syndrome often experience chronic pain, especially associated with the joints, hypermobility, or dislocations.

While physical therapy looks to lessen the frequency of dislocations and improve joint stability, it can also provide pain relief modalities as needed.

This can include a variety of treatments, such as heat or ice therapies, electric stimulation, dry needling, and more.

Pelvic Floor Physical Therapy

As mentioned before, individuals with Ehlers-Danlos syndrome are predisposed to pelvic floor dysfunctions due to the effects of the condition on the pelvic floor structures.

Therefore, pelvic floor therapy aims to relieve pain, improve pelvic floor muscle strength, and encourage muscle coordination to allow for both comfort and function.

This can involve exercises, postural corrections, and manual therapies. More specifically, pelvic floor therapy for EDS can include any of the following treatments:

Pelvic Floor Training

Individuals with EDS will need to strengthen certain muscle groups to support joint stability.

This applies to the pelvic floor, too! As discussed before, the pelvic floor is an important muscle group that supports all of your pelvic organs, and allows for stability and balance. It also performs functions like urination, defecation, and sexual activity.

When this muscle group becomes tight, weak or uncoordinated, it can cause many uncomfortable symptoms such as pain, pressure, heaviness, incontinence, and more.

Individuals with Ehlers-Danlos syndrome are more prone to these symptoms, so it is very important that your pelvic floor is cared for properly.

Your pelvic floor therapist will help you gain control and develop a deeper understanding of your pelvic floor by utilizing treatments such as neuromuscular re-education or biofeedback.

These treatments will help you regain control over pelvic floor contractions and relaxations—which will allow you to strengthen those muscles, too!

Not only will you strengthen your pelvic floor through guided exercises, but you can also expect to strengthen your shoulders, hips, back, and core.

These areas are directly affected by the pelvic floor, as they all coordinate and interconnect to support various functions and movements.

Strengthening all of these areas will help support the hip joints and lower the risk of pelvic floor dysfunction. Improving the strength and coordination of your pelvic floor will address a variety of symptoms associated with EDS, including bladder, bowel, or sexual dysfunctions.

Pain Management

Pelvic floor physical therapy can provide significant pain relief, utilizing treatments similar to the methods described in the orthopedic physical therapy section.

Pelvic floor dysfunction can often create chronic pain in the pelvis, hips, lower back, and abdominals; especially for individuals with Ehlers-Danlos.

Pain in these areas can be addressed with gentle manual therapies that address trigger points and relax tense muscles. Additionally, your physical therapist can teach you relaxation methods that will help reduce stress or muscle tension associated with your pain.

Prolapse Management

Individuals with EDS are more predisposed to pelvic organ prolapse. Therefore, pelvic floor physical therapy will look to provide guidance and treatment to help lessen this risk.

Not only does this require the pelvic floor training and strengthening described earlier, but also education on minimizing pressure and strain on the pelvic floor muscles.

This can involve aspects such as teaching proper bathroom habits, practicing good form when doing exercises, avoiding positions that create strain, managing constipation, and considering supportive devices.

For individuals with a vagina, supportive devices such as a pessary may be helpful for individuals with EDS.

Education and Behavioral Modifications

In addition to the education or behavioral changes used to manage prolapse, there are other practices individuals with EDS may need to engage in for general pelvic health.

Managing constipation or pelvic strain is applicable here as well, but also other lifestyle aspects such as posture or breathing patterns.

Poor posture or inefficient breathing patterns can strain the pelvic region, which can worsen symptoms of pelvic floor dysfunction or chronic pain.

Your physical therapist can teach you proper breathing techniques and postures to prevent pressure on your pelvis.

Additionally, you can expect to learn strategies to manage your condition at home. This can include at-home pain management techniques and exercises that will help maintain good health and joint stability.

These at-home techniques will be essential for maintaining good pelvic floor health in the long run! To further maintain good long-term health, it may be necessary to check in with your physical therapist occasionally to address any new symptoms that appear with age or bodily changes.

As you can see, physical therapy is a powerful treatment that empowers patients with Ehlers-Danlos syndrome to better manage their symptoms and live a more comfortable life!

Hive’s physical therapists are dedicated to providing a holistic treatment experience and supporting you in any way they can. While under their care, you can expect to receive any of the following treatments as needed:

• Neuromuscular re-education 
• Manual therapy
• Exercise prescription 
• Dry needling 
• Cupping 
• Tissue scraping 
• Behavioral modifications 
• Therapeutic activities 
• Electrical muscle stimulation
• Spinal manipulation 
• Therapeutic modalities 
• Biofeedback