Integrative Care

Ehlers-Danlos Syndrome Part Two: An Almost Miraculous Improvement in Comfort and Function!

Brief Case of Patient with Ehlers-Danlos Syndrome:

Susan was 32 years old when she began her Feldenkrais inspired physical therapy sessions at the Wellness Station.  Prior therapy included three different sets of sessions of traditional physical therapy.  Susan said,  “I felt like I was being taught to move in a rigid fashion!”

Her primary concerns were-

            1: Her inability to safely manage weight bearing situation’s

            2: Bilateral lower extremity joint pain.            

She required using a railing to go up and down stairs. She could not safely manipulate up or down any steep inclines.  When climbing more than one flight of stairs, her husband often provided her with support from behind.

After three sessions, she described experiencing minimal discomfort and significantly enhanced weight-bearing confidence. By her seventh session, she was independently going down a very steep embankment to dismantle a fence on her property!          

Susan’s stated, “I now feel like my brain knows how to provide the appropriate actions for my life’s intentions!” She learned to enhance neuromuscular patterns of function for all of her spinal and weight-bearing joints similarly to someone learning all of the keys of the piano to play a tune!

Written by Paul McAndrew, PT, GCFP and The Wellness Station Team

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.