Thriving With EDS & POTS

Understanding Ehlers-Danlos Syndrome (EDS) & Postural Orthostatic Tachycardia Syndrome (POTS)

We’ve written in the past about how mobility and range of motion is good for the body. However, there are times when extreme range of motion proves to be a legitimate obstacle in daily life.

One such case is Ehlers-Danlos Syndrome (EDS).  Another syndrome which often presents in individuals with EDS is Postural Orthostatic Tachycardia Syndrome (POTS).  

At Carbon Physical Therapy, we’re committed to providing education and personalized care with our comprehensive, compassionate approach. It's essential for patients and healthcare providers to recognize the interconnected nature of EDS and POTS, as this understanding can significantly improve the quality of care and support.  

What Is EDS?

Ehlers-Danlos Syndrome  is a genetic connective tissue disorder that presents as joint hypermobility, skin elasticity, and tissue fragility.  13 subtypes have been identified with Hypermobile Ehlers-Danlos Syndrome (hEDS) being the most common.  

The problem arises when the body is unable to produce enough collagen for connective tissue, weakening skin, muscles, tendons, fascia, ligaments and other tissue.  The syndrome logo is a zebra because practitioners are taught “when you hear hoof beats, think horses, not zebras.”   

A recent patient at Carbon Physical Therapy notes they had to self-diagnose their symptoms after discovering others with similar symptoms online.  Bringing this to their physician's attention during an exam, the provider was able to confirm EDS.  This is an all too common story of patients having to self-advocate for diagnosis and appropriate treatment of a condition.  

This individual notes, “it has been my experience that many medical professionals do not even know what EDS is, let alone know how to treat it.”  This isn't the only difficulty with the current medical system.  “My insurance company does not cover treatment for EDS, as it is ‘outside the ICD-10 codes that we cover’”.  Clearly there is a problem recognizing and treating this condition.

Because of the joint laxity EDS patients present with, individuals can develop arthritis and other inflammatory conditions in their joints - likely due to the increased instability and subsequent movement of the joint.  It is important to discontinue stretching hypermobile joints and begin strengthening specific joints.  

At Carbon PT, we believe our patients when they report their symptoms and work together to find solutions to pain and dysfunction.  Our therapy staff is well educated on EDS and can assist in improving patients’ lives with specific strengthening exercises that reduce joint pain and improve function.

What Is POTS?

POTS is a syndrome which causes lightheadedness, rapid heart rate (tachycardia), or fainting when moving from lying down to sitting or sitting to standing up.  It often accompanies the EDS diagnosis.  

When asked how it affects their daily life, a Carbon patient expressed, "Everything is cautious; nothing is carefree. If I get up from the couch, or out of bed, too quickly, I'll have a POTS episode, blacking out and falling to the ground."

It is thought that POTS is caused by laxity (think EDS) in the arterial walls which help shunt blood from the extremities and torso to the head while changing positions.  When the body fails to supply enough blood to the brain, the sympathetic branch of the autonomic nervous system increases adrenaline in the bloodstream, causing a cascading event of increased anxiety, palpitations, lightheadedness, chest discomfort, fatigue, nausea, headache and other unpleasant feelings.

POTS is treated with specific cardiovascular training to improve the body’s ability to move blood from the rest of the body to the brain while changing positions.  It also improves overall cardiac output to the body and brain which will reduce symptoms.  

Many patients with EDS also present with POTS.  Therefore, finding a practitioner that is well versed in both syndromes is critical in receiving care that will help you thrive.  The team at Carbon PT has several protocols and will work around your fitness desires to create a program that works for you and effectively treats your condition. 

Strategies To Take On EDS & POTS

Movement must be delicate and deliberate. There's a heightened importance to treating EDS and POTS with comprehensive strategies that keep the individual at the center of treatment. 

Personalized Physical Therapy

At Carbon, our specialists create personalized treatment plans that focus on improving muscle strength, which is vital for joint support and stability. These plans also aim to maintain flexibility and joint mobility in a safe manner, incorporating regulated and safe cardiovascular conditioning to enhance heart health, especially beneficial for those with POTS. We work closely with you to tailor strategies that fit into your life, helping you achieve a balance between activity and rest.

Integrative Approaches

Intentional care brings health to the next level: the best healthcare professionals aim to treat the whole person, not just the symptoms. This means providing psychological support to navigate the emotional challenges of living with a chronic condition and offering nutritional support to optimize diets for better health outcomes. 

Our team also includes physical therapists who can help you adapt your living and working spaces to better suit your needs, making daily activities more manageable. EDS and POTS are challenging enough; we aim to boost patient quality of life with an integrated approach that yields informed optimism.

Patient Education

Arming yourself with knowledge about EDS and POTS empowers you to take an active role in your healthcare. Like any deliberate therapeutic action, lifestyle improvement, or recovery journey, a comprehensive understanding of your specific bodily needs and goals is the foundation on which to make optimized decisions.

Engage in close conversation with us at Carbon Physical Therapy. We are deliberate in our dialogue, designed to deepen your understanding of these conditions. By learning more about how they affect your body and ways to manage symptoms, you can take control of your health and advocate for your needs more effectively.

Building a Supportive Community

You are not alone. Finding others who share your experiences can provide comfort, validation, and practical advice. Community is a powerful commodity - particularly in rehabilitation and restorative care.

Carbon Physical Therapy encourages and supports individuals who are looking to connect. A sense of community is invaluable for emotional support and sharing strategies that work. Let us partner with you and support you in your journey.

Embracing a Positive Outlook

Despite the challenges posed by EDS and POTS, focusing on your abilities and what you can achieve plays a crucial role in maintaining a positive outlook. Celebrating your achievements, no matter how small, and setting realistic goals can significantly improve your sense of well-being. 

Embracing a positive outlook in any physical therapy program can be challenging, yet its importance should not be understated. When asked how the aforementioned patient seeks a healthy lifestyle, they shared, "I go to the gym to be able to work out, as advised per my Physical Therapist's guidelines. I also take every opportunity to do self care such as adult coloring books, beading, scrapbooking, painting, etc, anything creative."

Looking beyond limitations can allow individuals the opportunity to find activities and goals that bring joy and fulfillment into life.

Carbon Physical Therapy: Your Partner in Care

Our commitment at Carbon Physical Therapy is to help our patients with EDS and POTS not just survive but thrive. With our expert care, comprehensive resources, and a nurturing approach, we are here to support you every step of the way. 

If you are dealing with the conditions described in this blog, Carbon Physical Therapy has the knowledge and skilled care to help you maximize your function and minimize your discomfort while living with these syndromes.  We would love to chat with you and develop a plan.

Through personalized physical therapy plans tailored to each individual's needs, incorporating integrative approaches that address all facets of health, providing extensive patient education, fostering a supportive community, and encouraging a positive outlook, Carbon Physical Therapy endeavors to empower patients to navigate their journey with EDS and POTS with resilience and optimism.

Patients can cultivate a sense of empowerment and fulfillment in their rehabilitation journey. At Carbon, we are committed to accompanying our patients every step of the way, ensuring they receive the comprehensive care and support they deserve.

Contact us to discover how we can assist you in navigating these conditions and moving towards a healthier, more vibrant life.