Ehlers-Danlos Syndrome: Is Your Physical Therapy Hurting More Than Helping?

When Well Intentioned Therapy Impairs Function and How That Can Be Resolved!

It is estimated that as many as 1 in 5000 people are diagnosed with the hypermobile type of Ehlers-Danlos syndrome. As a connective tissue disorder, it often leaves those individuals with unstable joints. They experience considerable difficulty in overall safe mobility, and often suffer musculoskeletal strain and pain, much of which is related to the excessive effort required in every day activities.

The typical and presumptive sensible therapeutic approach is to offer these patients strengthening exercises with an emphasis on stabilizing the weight-bearing joints, especially the hips and spine. Right? Appears quite logical. But here’s the kicker! Regrettably, HOW joint stabilization is typically taught in the traditional physical therapy approach creates even MORE instability!

Why is that? Well, imagine trying to play on the piano while you are wearing mittens. Every Ehlers-Danlos patient that I have seen has received prior therapy that missed the need to learn how to access neuromuscular control of the individual segments of the spine and the smaller more intimate muscles of the hip joints.

Traditional Physical Therapy

If we look at a typical therapeutic program, unfortunately only the larger, longer, more superficial muscles are targeted and involved. The smaller, more intimate muscles of the spinal segments and the hips are ignored, or at least inadvertently not included in the exercise program. (The three deep muscles of the back include the semispinalis, multifidus, and rotators. These muscles stabilize the vertebral column and also have a role in proprioception and balance. Moreover, these muscles help with the movements of the vertebral column and to maintain posture.)

Imagine this

Here’s an example that will help you to appreciate how profoundly detrimental this approach is for anyone with instability. Please imagine a child stacking 15 blocks on top of one another. The child, of course, wants to play with those blocks and they keep falling over. If the child’s intent is to keep the stack from falling they may become frustrated. Here are two possibilities for helping to stabilize that stack of blocks-
            1.  You attach 4 long elastic bands, one on all four sides of the stack. One end attaches to the top block and the other at the bottom. The middle 13 blocks are not connected to any elastic.
            2. The other option is to have shorter elastics connecting each block to one another. All 15 blocks are connected on all 4 sides.

And let’s pretend in both arrangements that the elastics can contract and respond to electrical impulses, as do muscles. Which of those two situations is more stable? Which would allow the child to create many shapes with all 15 blocks, like playing with a Slinky?

In the first case, those 4 long elastics would have to be incredibly tight to prevent the tower from falling apart with any attempt at reshaping it. Regrettably, the traditional exercise approach to stabilization is very similar and undifferentiated (Remember trying to play a tune with mittens on!) and engages only the large muscles. The exercise programs are almost all linear in nature, NOT including a three dimensional engagement that would invite the small muscles to learn how to participate, and thus provide dynamic stability for that person.

When primarily only the large, more superficial muscles are exercised, that person’s body is moving with excessive tension and sadly, considerably less stability. The Ehlers-Danlos patient becomes excessively vigilant and guarded against any free-flowing activity. This makes for an incredibly limited, frustrating and painful movement repertoire.

When the smaller, deeper more intimate muscles to the spine have been properly engaged (the second use of elastics connecting all the “vertebral blocks” to one another), for example in a Feldenkrais inspired movement lesson, you have a neuromuscular pattern that is responsive to the body‘s needs in all shapes and situations.

Integrative Physical Therapy

At the Wellness Station, our physical therapy method is an integration of the Feldenkrais method, gentle yoga, and the best of traditional physical therapy. We provide somatic learning that allows for the joints to be both stable and mobile, a body that moves skillfully, freely, and elegantly.We are so gratified to witness our Ehlers-Danlos clientele’s dramatic improvement in confidence, comfort, and the ability to live life more spontaneously and joyfully. The Wellness Station welcomes all individuals with any issues related to hyper-mobility and compromised living styles. We derive incredible satisfaction from seeing the enhanced quality of life that can result from the integrative Feldenkrais methodology.

Solving the Pain Mystery: Movement Alleviates Chronic Pain

Do you experience musculoskeletal pain that diminishes spontaneity, peace of mind, and joyful living?

This post will help you begin to understand the factors contributing to chronic pain and how a movement awareness based approach can bring you relief.

Pain Means Change

It is widely accepted that pain is our body’s way of communicating a request for change, asking us to do less of certain stressful behaviors and more of stimulating, comforting, and nourishing activities.

At The Wellness Station, we see clientele who have often had prior therapy that has been unsuccessful. The key missing piece, the piece to solving the mystery of chronic pain, it’s not so much WHAT we do activity wise, but HOW we do it!

Here is an opportunity to experience a Feldenkrais-inspired movement lesson that will improve neuromuscular coordination, decrease tissue stressors and improve bio mechanical efficiency and comfort.

Try This At Home

1. Please come to standing, and preferably have some object - real or imaginary - that you might be reaching up to. For example, the molasses on the top cabinet shelf.

   Let’s assume you’re right handed. If otherwise, just transfer all the below instructions to the left.

   Which ever arm you are reaching with for the object is to that side above you.

2. Please take a moment to pay attention to easy breathing.

3. Have both feet making full contact with the floor and reach up with the right arm for an object that is a couple of inches beyond a simple overhead reach. In other words, your heels stay on the floor and you have only moved primarily from the shoulder complex.

4. Now explore how you would get your hand 2 inches higher to access that object. Do you lift a heel, one or both? If only one, which one?

   Any tipping of your head, change anything at all in your rib cage?

5. Lower your arm, and return to paying attention to relaxed breathing.

   Now explore doing the same with the left arm, reaching for an object that is to the left of the midline.

6. Leave that and sit towards the front edge on a relatively firm chair.

   Feel your feet making firm contact with the floor. Push with your right foot and feel your pelvis rolling to left; reverse that by pushing with the other foot, Your pelvis with now role to the right.

   Repeat that a few times. it’s a little bit like being on a rocking boat, Your pelvis like a ball rolling left and right.

7. Pause; interlace your fingers and place them on top of your head so that your elbows are out to the side like wings.

8. Resume rocking your pelvis left and right and tip your arms and your head the opposite direction.

   Your pelvis is like a ball going one direction and your head is another ball at the top of your spine going opposite. For example, as your pelvis roles to the left (you could slip a thin piece of paper under your right buttock), your arms are tipping with the right elbow going down and the left elbow going up. And then experience the reverse as your pelvis rolls to the right.

9. Rest for a few moments.

10. Resume your pelvis rolling left and right with the head and arms tipping the other way. Can you feel how your body is acting like an accordion, folding in on one side, expanding on the other?

11. Please come back to standing.

    Return to reaching for that imaginary or real object and whichever arm you reach with raise the heel of the opposite foot pushing with the ball of the foot and keeping that knee straight. Explore that for a while.

12. Can you feel how on the side of the lifting heel, your rib cage and torso are folding in. On the opposite reaching side your torso is expanding towards that object.

    For example, reaching with the right arm and pushing with the left foot, your left shoulder will drop and your right shoulder will go higher.

    Repeat that a few times.

13. You may want to shift to the other arm reaching.

    At some point go back to the original reaching and compare which reach feels easier and more accessible.

14. Let’s make this reach for that object that’s 2 inches beyond a simple reach, let’s make it even easier!

    Initiate with the opposite foot pushing, sense that the arm reaching is a result of the opposite foot pushing and your body shaping like an accordion-expanding on that reaching side to send that shoulder and hand higher.

15. AND, The next time you reach for that object allow your head to tip away from where your hand is reaching reaching with the right, slightly rotate your head to the left.

Clients who have participated in this Feldenkrais inspired lesson, especially shorter women, explain how grateful they are to reach higher — no longer experiencing strain on the neck and shoulders.

How would you describe the difference in effort and relative ease when you compare reaching after having done the lesson?

That lesson, “reaching with my foot,“ is an example of a task being done with optimal musculoskeletal organization.

When we move with more awareness and bio mechanical efficiency, the outcome is less stressful forces on our tissues and joints.

Please, again reach for a higher object. Can you feel your body thanking you for the absence of muscular strain and the experience of ease and flow?

The take away relative to chronic pain is that by using the Feldenkrais method to you are practicing preventative medicine and enhancing the healing of overstressed tissues.

If you pause and reflect on what happened with your reach after doing that lesson, you may realize that the missing link in resolving chronic pain is learning how to better coordinate and integrate all of the moving parts from the head to the toes.

In summary, by moving better, we feel better!

The Elusive Obvious: How Better Movement Heals the Whole Person

How are stress, anxiety, movement challenges (e.g. balance issues, neurological disorders, musculoskeletal injuries), chronic pain, and even long-term symptoms of COVID-19 related to our approach at The Wellness Station?

At The Wellness Station, our clientele present primarily with issues of musculoskeletal pain, movement disorders, balance challenges, and various stress-related conditions. Our therapeutic approach is neuroplasticity in action, with the goal of helping people achieve their goals and live healthier, more active lifestyles. We provide movement lessons that emphasize working with one's body, rather than on one's body. These lessons help to establish and strengthen motor pathways that facilitate efficiency of movement and inner calm in order to move towards a more fulfilling and pain-free experience of daily life.

Our approach, based on the Feldenkrais Method and therapeutic yoga, helps to shift the autonomic nervous system into the parasympathetic state with all of the various organ systems working inter-dependently in a homeostatic, rhythmic flow. And thankfully when the body is more in a state of calm and balance, that systemic harmony allows for healing to occur in a variety of our bodies systems.

Our focus on decreasing the body's stress response (fight or flight) goes beyond improving movement and decreasing pain. Much to our delight, our clients often report that other health issues also improve, including sleep quality, gastrointestinal distress, memory and cognition, energy levels, and positive management of blood pressure and other heart-related conditions. While we do not claim to treat those conditions directly, research and our experience as healthcare providers can tell us that lifestyle choices- how well and how often we move, our ability to manage stress, the choices of what we put in our bodies, and our daily practices of self-care can have major influences on our mental and physical health.

For example, COVID-19 can lead to long-term symptoms including cognitive issues, labored breathing (dyspnea), pain with deep breaths, loss of smell and taste , and overall malaise. And all of the above create tremendous fear and anxiety about one’s present and future capacity for functioning well -the sympathetic division of the autonomic nervous system becomes over-stimulated, and fight, flight, or freeze characteristics prevail. By learning tools to regulate the nervous system through mindful movement and other daily practices, our clients develop the self-efficacy, knowledge, and wisdom necessary to combat or prevent the symptom manifestation of many diseases.

Coming full circle with the above health challenges, at The Wellness Station our emphasis on improving the quality of how we move, think, feel, and sense regularly resolves musculoskeletal pain, improves balance and movement difficulties, and also has many positive effects on the various organ systems.

It is wonderful to hear our patients report improvement with memory and other cognitive issues, high blood pressure and cardiac disorders, various gastrointestinal challenges, sleep quality, and expressing “I feel I have my life back again!”

In the words of Moshe Feldenkrais, we help our clients "make the impossible possible, the possible easy, and the easy elegant."

Just For Fun: Playful Movement to Nourish Brain and Body

According to “Kids Beyond Limits,” in the first three years of life, the brain grows four fold, reaching 80% of its adult weight. This increase in size is due primarily to an increase in the number of connections between nerve cells.

(Kids Beyond Limits: The Anat Baniel Method for Awakening the Brain and Transforming the Life of Your Child With Special Needs by Anat Baniel)

And, of course, a playful engagement with and in the world is a major contributor to the exuberance and thrill of child development.

How does this relate to we adults, wanting to live a life of spontaneity, joyfulness, and well-being?

When we live a life frequently engaging in movement of many varieties, done with curiosity and attentiveness, it stimulates our imagination, engages those billion trillion synapses in each of our brains, and provides a life of spontaneity and pleasure!

We look forward to seeing you in the four week Feldenkrais series with Paul Mcandrew, Just For Fun: Playful Movement to Nourish Brain and Body.

The Sea Squirt: Lessons on Brains and Pains

Have you come up with any resolutions or intentions for 2021? We hope you’ll add this sea squirt inspired idea too: You can improve brain and body health with ONE activity! What’s the ONE activity? Read more to find out!

Brain Synapses

The human brain is incredibly complex and diverse. It contains 1 billion trillion synapses! (Yes, one billion trillion is grammatically correct!) The synapse is where neurons meet to send messages for communication.

Brain synapses contain approximately 1000 different proteins, and each and every synapse is diverse from any other.

What does this tell us about the purpose of the brain and the nervous system?

And, even more importantly, what does this tell us about how to keep our brain and ourselves healthy?

The Sea Squirt

Did you know that without one particular phenomenon occurring in any organism, there would be no brain present?

Let’s see if thinking about a tad pole like organism, the sea squirt, can give us a clue as to why we have brains…

The sea squirt has a brain and a spinal cord connected to a single eye and a tail for swimming. But once it attaches itself to something, it no longer moves. It then actually absorbs its own brain!

It no longer needs it because it is no longer moving!

Photo courtesy of Brittanica.com.

Brains are for Movement

Yes, movement is why we have brains!

And what of the quality of movement do you think keeps the brain active, engaged, and thriving?

You got it! —movements that stimulate curiosity, activities that engage in a variety of shapes and rhythms—three dimensional movements that keep us young and healthy!

If you will, please visualize the following:

• children who have just been let out for school recess

• the joy of participants in recreational sports and dance

• dogs romping at a dog park

• the sheer ecstasy of an infant discovering the ability to crawl and eventually walk and run!

The variety and pleasurable aspects of movement are what keep the brain flowing, maintaining the complex synapses as well as the simple ones.

Pain Prevention

Sadly, most of us decrease the complexity and variations of our movement experiences as we get older. The old “use it or lose it“ saying.

Our body and brain suffer—less variety of movement creates more tension in the tissues and pressure on the joints, and thus pain and diminished mobility result.

What can we do to prevent and even reverse these changes?

The good news is with what we know about neuroplasticity, we can always revitalize and create more functional brain tissue for greater mobility and pain-free well-being.

Movement Classes

And the key to that is movement…

…especially of the nature that you will experience in the Feldenkrais “Awareness Through Movement“ educational classes.

The movement class series “Superflow” begins in January and continues through March. Get more information about the classes, and sign up for one class…or sign up for a monthly series… or sign up for all three months!

Remember, “As the brain flows, so the pain goes!“

We look forward to joining you in 2021 as we achieve happier and healthier bodies and lives!