A Guide to Physical Therapy for Ehlers-Danlos Syndrome

In our practice, we’ve become fairly well known for providing effective physical therapy for Ehlers-Danlos patients. Due to our expertise in the area, we’ve had patients travel far just to meet with us. Below, we’ll outline some of the techniques and procedures we use to help our Ehlers-Danlos patients.

Ehlers-Danlos physical therapy commonly includes:

  • Customized exercise programs
  • Proprioceptive training
  • Pain management techniques
  • Patient education

In this article, we’ll discuss some of the techniques we use to work with Ehlers-Danlos patients, and hopefully provide you with the information you need to decide whether physical therapy is a good option for you to manage your condition.

A quick overview of physical therapy treatment for Ehlers-Danlos syndrome

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders characterized by hypermobility, skin hyperextensibility, and tissue fragility. Individuals with EDS often face chronic pain, frequent joint dislocations, and a myriad of other symptoms that can significantly impact their quality of life.

Ehlers-Danlos Syndrome (EDS) physical therapy works by strengthening the muscles around the joints to improve stability, enhancing proprioception to prevent injuries, and managing pain through tailored exercises and modalities.

Among the various treatment options available, physical therapy (PT) stands out as a cornerstone in managing EDS. This blog post delves into how physical therapy works for EDS, its pros and cons, and how it integrates with other treatment options.

How physical therapy works for Ehlers-Danlos syndrome

Ehlers-Danlos syndrome physical therapy focuses on strengthening the muscles around the joints, improving proprioception (the sense of joint position), and enhancing overall physical function. Given the fragile nature of connective tissues in EDS patients, physical therapists adopt a specialized approach that includes:

Low-impact exercise programs focused on strength and stability

Ehlers-Danlos patients need individualized treatment programs, but perhaps just as importantly, they need a watchful eye on them to ensure that the exercises are helpful. Ehlers-Danlos exercise programs are typically comprised of low-impact exercises that can build strength and reduce joint instability.

These strengthening exercises helps prevent dislocations in future activities, as well as providing patients with the confidence they need to tackle daily activities.

Proprioceptive training

In addition to traditional strength and stability exercises we would use in physical therapy, we typically have Ehlers-Danlos patients perform proprioceptive exercises This involves coaching the patient on techniques that improve the body’s ability to sense joint movement and position.

Better proprioception can help prevent joint dislocations and injuries. Examples include balance training, such as standing on one leg, and exercises that require controlled movements, like using a balance board or performing specific, guided movements with eyes closed.

Pain management techniques

Pain management techniques in physical therapy for Ehlers-Danlos Syndrome include various strategies to reduce pain and improve quality of life. These techniques encompass the use of modalities such as heat and cold therapy to soothe sore muscles and reduce inflammation, manual therapy to relieve tension and improve tissue mobility, and specific stretching exercises to alleviate stiffness.

Additionally, therapists might teach relaxation and breathing exercises to help manage chronic pain and stress, as well as ergonomic advice to avoid pain triggers during daily activities. The goal is to equip patients with tools to manage pain independently and reduce reliance on medications.

Education and lifestyle modifications

Physical therapy is only good if it has an impact on a patient’s quality of life outside of the clinic. To that end, we often also end up discussing modifications that patients can make to basic movements they perform throughout their day, and the important of regular, appropriate exercise.

Lifestyle modifications might involve ergonomic adjustments at home and work, recommendations for supportive footwear, advice on dietary choices that support joint health, and strategies for managing fatigue and stress.

A woman with Ehlers Danlos Syndrome.

Benefits of physical therapy for EDS

  1. Improved Joint Stability: By strengthening the muscles around the joints, physical therapy can reduce the frequency of dislocations and subluxations.
  2. Enhanced Proprioception: Improved awareness of joint position can help prevent injuries and improve overall coordination.
  3. Pain Reduction: Regular PT sessions can help manage chronic pain through tailored exercises and pain management techniques.
  4. Increased Mobility and Function: PT helps maintain or improve the range of motion and functional abilities, which can enhance the quality of life.
  5. Education and Empowerment: Patients gain a better understanding of their condition and learn strategies to manage symptoms independently, promoting long-term self-care.

Potential drawbacks of physical therapy for EDS

Like any form of treatment, physical therapy comes with some of its own pros and cons.

  1. Risk of Overexertion: If not carefully monitored, physical activity can lead to overexertion, causing increased pain and potential injury.
  2. Limited Effect on Severe Cases: In more severe cases of EDS, physical therapy alone may not be sufficient to manage symptoms effectively.
  3. Need for Specialized Knowledge: Effective PT for EDS requires therapists with specific knowledge and experience in treating the condition, which may not always be readily available.
  4. Ongoing Commitment: PT often requires a long-term commitment, and consistent attendance can be challenging for some patients.

Integrating Physical Therapy with Other Treatment Options

While physical therapy, in general, will benefit EDS patients, we also recognize that it can often require a mix of approaches to effectively manage the condition. First, we’ll say that it starts with having a good physician to guide you on your journey (feel free to reach out to us if you’re looking for one in your area).

However, the following treatment options can also provide a great help to EDS patients looking for the greatest improvement over time:

  1. Bracing and Supports: Orthotic devices can provide additional joint support and stability. PTs can recommend and help fit these devices appropriately.
  2. Dry Needling: Many of our patients have had success in managing chronic pain and alleviating myofascial trigger points by using dry needling for their Ehlers-Danlos.
  3. Lifestyle and Nutritional Counseling: A holistic approach that includes dietary advice to support connective tissue health can complement the benefits of physical therapy.
  4. Psychological Support: Chronic pain and the challenges of living with EDS can affect mental health. Integrating psychological support, such as cognitive-behavioral therapy, with physical therapy can provide comprehensive care.
  5. Medications: Pain management may include medications such as NSAIDs, muscle relaxants, or low-dose antidepressants. PT can help reduce reliance on medications over time.
  6. Surgical Interventions: In cases where structural abnormalities need correction, surgery might be necessary. Note that post-surgery, physical therapy will be necessary for rehabilitation and restoring function.

How to get physical therapy for EDS

Physical therapy plays a vital role in managing Ehlers-Danlos Syndrome, offering significant benefits in terms of pain management, joint stability, and overall function. While there are challenges and limitations, especially in severe cases, the pros often outweigh the cons.

If you’re looking for a physical therapist experienced in helping manage Ehlers-Danlos syndrome, reach out to us or read more about our Ehlers-Danlos treatment services.

We look forward to hearing from you!

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