In this post, we will explain what Hypermobile Ehlers-Danlos Syndrome (hEDS) is, how we help our hEDS patients at Warrior Wellness and Rehab, and why having a physical therapist who specializes in hEDS is one of the best things that you can do for your body, your health, and your future.
“It feels like I’m made of rubber bands that are about to snap.” -Katie
“It’s like an old house, creaking, squeaking, swaying, and popping in the night, the wooden walls and nails coming apart at the slightest breeze.” -London
“It’s like riding a bicycle with very loose bolts. You have to hold it together yourself or else it will fall apart.” -Melissa
“It’s like falling down the up escalator indefinitely while bystanders speculate about how you got there, what your injuries might be, and if you really even look hurt.” -Jess
“The cruelest symptom of our illness is disbelief by medical personnel.” -Mary1
If this sounds like you, Dr. Jen at Warrior Wellness and Rehab gets it. During her own diagnosis and journey with hEDS, she recognized just how difficult, frustrating and lacking the current healthcare system is in providing care to hEDS patients. And then she did something about it- she is a physical therapist and health coach who specializes in the care of patients with hEDS and other chronic mobility conditions.
Imagine how good it will feel partnering with a healthcare provider who has walked in your shoes. We know how important it is to have the energy to participate in the activities, the relationships, and the parts of your life that are meaningful to you. Let's work together to manage your pain, improve your strength (hEDS warriors are STRONG!), and increase your quality of life. Dr. Jen brings unmatched empathy, understanding, and perspective to her patients, and she is dedicated to helping you reach your goals.
What is hEDS?
hEDS is a genetic disorder that affects connective tissue. Each person experiences different symptoms and degrees of severity. hEDS may be relatively minor in some people, while others may experience symptoms that have a greater impact on their lives. The main features of hEDS are-
Joint hypermobility– Your joints have a larger range of motion, or flexibility, than usual. This leads to instability, where your bones are not held securely in place- causing pain, sprains, dislocations, and subluxations.
Skin hyperextensibility– Your skin can stretch beyond a normal range. You may have very fragile, soft, or stretchy skin with excessive scarring or stretch marks. Your wounds and injuries may take longer to heal.
Tissue fragility– your body's structures and organs are more vulnerable to damage.2
Connective tissue is found in almost every part of your body- in your bones, joints, tendons, ligaments, and skin. It also exists in your digestive tract and nervous system. It is in your heart, blood vessels, eyes, gums, and teeth- which can lead to expressions of hEDS in all of these places. Many people with hEDS experience allergy symptoms, dysautonomia, and dizziness upon standing, known as POTS (postural orthostatic tachycardia syndrome).3
Because hEDS can present with a staggering number of symptoms and varied severity, patients with hEDS have a strong history of being misdiagnosed or undiagnosed. Some have spent years, even decades, before receiving a diagnosis. And they can often feel overlooked, misunderstood, and neglected by healthcare providers unfamiliar with hEDS.
Meet Dr. Jen Bambruogh, PT, DPT, NCS
"I feel very heard and understood. This is such a relief as I build a care team in my new home. Dr. Jen has started me on a plan to achieve my goals and helped me set another functional goal that I will benefit from greatly. On top of this, my discomfort is reduced, and my mobility is back on track after the first visit." -Warrior Wellness Patient Testimonial
Dr. Jen holds a doctorate degree in physical therapy, is a board-certified Neurologic Clinical Specialist, and holds certifications in vestibular rehabilitation and dry needling. She specializes in treating hEDS and many other chronic conditions. She uses her extensive knowledge and skills in orthopedic manual therapy, combined with a holistic and patient-centered approach to help empower her patients to get back to living the lives that they want.
As a chronic illness warrior diagnosed with hEDS herself, Dr. Jen naturally empathizes with her patients and strongly values open and honest communication. She has been in pain, frustrated, and confused by healthcare providers before. And she never wants her patients to feel the way she did. At Warrior Wellness and Rehab-
We listen to you. Each visit begins with time for you to discuss how things are going, any changes you have noted, or any concerns you have.
We develop an individualized plan. YOU are the center of every plan. Using our training, we use the information you give us to tailor a plan to fit your needs.
We empower you to meet your goals. Through individualized 1:1 sessions with your DPT, you will gain the confidence you desire and need in your body. We also help you set and meet meaningful goals. You are never working toward your goals alone- we strongly believe in a team approach!
Physical Therapy for hEDS
Physical therapy and exercises that strengthen and stabilize muscles and joints are considered the cornerstone of treatment for hEDS. Still, not all clinicians are familiar with its symptoms, diagnosis, or effective treatment regimens.4
People with hEDS can often develop a fear of movement and have a decreased tolerance to activity and exercise, so partnering with a therapist who understands and empathizes with your unique struggle is imperative. As a patient with hEDS, your body has been saying "NO" for a long time. We can respect and honor why that is happening– and at the same time, help your body learn to start saying "YES" again. Here are some of the ways we manage hEDS at Warrior Rehab and Wellness-
Graded exercise therapy- We gradually increase your activity over time, which improves your strength and endurance. It is especially effective in helping patients with hEDS, POTs, and chronic fatigue regain strength and stamina.
Proprioception- This is the joint's ability to tell you where you are in space, and is often altered in those with hEDS- causing you to feel wiggly, loose and off balance. We work to train proprioception which decreases your risk of injuries, such as rolling your ankle.
Exercises for postural fatigue and headaches- The weakening of your neck, back, and skeletal muscles leads to poor posture, fatigue and headaches. Dr. Jen shows you exercises that strengthen these muscles to provide relief from headaches and migraines. We also help you correctly strengthen your core and skeletal muscles. This provides global increases in stability and endurance- leading to a decreased risk of injury.
hEDS-specific tape- In addition to stability exercises, we use Thrive Tape to help teach your muscles to correctly support your joints. This extra support helps you move with less pain and discomfort, and helps treat and prevent injuries such as strains or sprains.
Scar-tissue mobilization- If you have excess and stiff scar tissue, Dr. Jen can teach you manual therapy methods and recommend topical products to help your body heal.
Vestibular therapy- hEDS is associated with dysautonomia and POTS– which can mean dizziness and vertigo. We are pleased to offer vestibular therapy using video goggles from Vestibular First to ease these symptoms.
Dry needling- This reduces muscle spasms, inflammation, and pain, also promotes healing by encouraging your body to release its own natural pain killers.
Pain Science- With chronic pain, your body goes into overdrive to assess threats and protect you from things that have caused you pain in the past. Your brain can start assigning false threats to something that no longer causes pain. PT can help teach your nervous system to relearn this response.
Health Coaching for hEDS
"Dr. Bambrough's passion goes beyond her practice. She's dedicated to helping improve the lives of her clients. Her holistic approach allows for a unique perspective when identifying the cause of one's discomfort" -Warrior Wellness Patient Testimonial
hEDS is a chronic, complex, and multi-faceted condition. And life with hEDS can be challenging. We understand that living with chronic pain, fatigue, and illness can have substantial psychological and emotional impacts. Because of this, we embrace a holistic approach and are thrilled to provide health coaching in addition to physical therapy.
Through health coaching, we focus on teaching you tools to manage your limited energy best, and ways to help restore your energy when needed. Sleep, rest, and relaxation are tremendously important. So are planning and reviewing your activities to avoid the "boom and bust" cycles that can come with hEDS.5 Discussing lifestyle modifications and nutrition are all ways to help manage hEDS. We are there for support, we provide encouragement, and can help you set and achieve meaningful goals for yourself.
We always come from a place of compassion, and we honor where you are at in your hEDS journey. We promote a healthy body image and the importance of respecting and appreciating your body. And it comes from someone who has been there and truly gets it. Dr. Jen is a physical therapist, health coach, and expert in her field- but she is also a person you can talk to that will genuinely listen.
Why Warrior Wellness and Rehab?
"A warrior is a brave and experienced fighter, and those who have chronic conditions and still choose to continue to pave a path to their future are warriors. The symbolic nature of being a warrior demonstrates that the journey may not be easy, but with the right support, it will be worth it." -Dr. Jen
We want you to know that there are many ways to strengthen your body, strengthen your mind, and manage your symptoms to live a satisfying and meaningful life despite being diagnosed with hEDS. We are hopeful for the future, we love seeing our patients benefit from health coaching and physical therapy for hEDS, and we are inspired by each of our patient’s unique journeys.
hEDS is so much more than a benign joint hypermobility condition- and having a PT that understands this can make all the difference in your life. Dr. Jen welcomes you to the Warrior Wellness and Rehab community and is honored to partner with you in your chronic illness journey.