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After 5 consecutive months in physical therapy (and 7 months of the past year in PT), I am finally graduating! The issues that prompted the referrals were related to my Ehlers Danlos Syndrome diagnosis. First the subluxations (slipping) of my sacroiliac joints worsened until I was having nerve pain down my legs when I sat for any length of time. Then I developed tendonitis in my right shoulder that progressed to partial rotator cuff tears and a frozen shoulder. Today, after months of PT and a month of rigorous daily workout routines, I feel stronger than ever before in my life and ready to achieve a higher degree of fitness.
Not all physical therapy providers are equal. Initially, when my symptoms became problematic enough to necessitate PT, I chose a practice for the sole reason that they offered hydrotherapy in a 90-degree pool. Hydrotherapy is low-impact and very beneficial to the person with EDS, and the PTA who administered my therapy was engaging and fun. Hydrotherapy feels wonderful and I looked forward to my sessions. However, in two months of biweekly therapy, I saw the actual physical therapist exactly twice. Upon my initial evaluation, he gave me 4 home exercises that never changed through the 2 months that they treated my shoulder. My injury progressed from tendonitis to two partial-thickness tears and a frozen shoulder. I had to stop working due to pain and disability. Ultimately, the care provided by this practice yielded no benefit.
Dismayed by my diagnosis and frustrated by my lack of progress, I returned to Neff Physical Therapy in Quarryville, PA. I had been a client of Neff PT a few years earlier to treat subluxations of my left shoulder, which quickly resolved under their management. This time I arrived in sorry shape in the dark, dark days of January. I was in tremendous pain and the slightest rotation of my forearm sent paroxysms of agony though the inflamed shoulder. I couldn't sleep, couldn't put on a sweatshirt, and couldn't put my hand on my head or on the opposite shoulder. I was anxious and miserable, frustrated about my inability to work, and terrified at the possibility that the shoulder would require surgical intervention. People with EDS do not heal well from surgery, and sometimes surgical repair involves trading one problem for another.
Neff’s approach to physical therapy involves manipulating the joint to restore its normal anatomical position and movement, then working through an ever-expanding regimen of strengthening exercises to maintain that alignment. I saw the same physical therapist, Dr Davis, at every appointment, and worked with the same PTA, Dillon, who put me though my paces each time, modifying exercises as my strength and ability improved.
With each visit, Dr Davis listened carefully to my self-assessment, answered questions, performed manual therapy that restored normal alignment, and prescribed exercises that helped me continually gain strength and improve functionality. While my shoulder injury was my presenting problem, Dr Davis saw me holistically. He worked on the spasms and restrictions that prevented my neck from moving normally. My sacroiliac joint suffered frequent subluxations and he used manual therapy to correct abnormal rotation of my sacrum. On a typical visit, I would undergo 10-15 minutes of manual therapy and perform 45 minutes of stretching and strengthening. Under their care, I made steady progress.
Today, after 5 continuous months of physical therapy and a month of daily workouts, I feel strong. I still have months of stretching and strengthening ahead of me to recover my previous range of motion. But I feel strong and vibrant, ready to build my future self though hard work and clean sweat.
As a person with EDS, it is almost inevitable that I will require physical therapy in the future. Now that I have adopted a lifestyle that emphasizes daily fitness training, I hope that my future breakdowns and subluxations will be infrequent in timing and minor in degree. But it has become clear to me that some physical therapy providers are much more effective than others. I am grateful to Neff PT for restoring the functionality of my arm and pointing me towards a lifetime of better health.
Bonnie Gruenberg is a certified nurse-midwife, artist, author, photographer, blogger, and hobby farmer. She also struggles with the challenges of a chronic connective tissue disease: Ehlers Danlos Syndrome.