Blog Post #1 My Story

My journey with Pain, Numbness, and Discomfort

Pain was no stranger to me. I have no memory of not having pain in my upper back as a child. I never thought about it as pain because it was all I had ever known. I thought this pain was normal, at least I did until much later in life. When I was 18 and a driven college freshman in music school studying horn and music education, the pain in my upper back intensified and traveled down my arms. My hands felt unusually tired or weak all of the time but, I said to myself, “no pain, no gain” and I pushed harder. Again, I thought this was normal until I started losing feeling in my hands (both the ulnar and medial nerve sides) so I went to the reputable physical therapy (PT) department on my college campus. They tried all kinds of strengthening and therapeutic approaches but I was not improving. When you have an invisible disability some people actually question your claims and credibility. When I described the intensity of my pain to the head of the PT department he said that I seemed stressed and that I should “go for a run”. He clearly insinuated that my symptoms were in my head. I felt so betrayed and confused. Around that time I was carrying a large stack of books to my dorm room when I felt both of my hands/arms suddenly become completely numb, weak, and then my back went into spasm. 

The intensity of my discomfort and pain was extreme. In my vulnerable state I thought it was because I was not talented-I doubted myself on every level and felt worthless. I called my mother crying and she told me to see a doctor-I was worried about the cost because I had no money but she said she could add me to her insurance. I was incredibly lucky to find an orthopedic doctor who was able to give me an initial diagnosis which he said was Thoracic Outlet Syndrome (TOS) due, in part, to an extra cervical rib. He pointed out how my shoulders dragged down with weight and had compressed the thoracic inlet area. This drag or compression was caused by holding my horn, heavy bags and books using poor posture combined with hypermobility or joint laxity. He also said that I had carpal tunnel syndrome (CTS), severe tendinitis, and a sublexing ulnar nerve on the right side. 

The doctor told me that I should pick another major, something other than music and performance, but this was not possible because I was on a full talent scholarship and I had no other means to pay for my education.

The PT was given a doctor’s prescription on how to treat me and I felt somewhat vindicated at having paperwork and x-rays indicating a real diagnosis. I felt like I had a little more of my power/optimism back that I tried to use toward getting better. I used some of my loan money to see a naturopathic doctor who gave me herbs that made me sicker. I love naturopathic doctors but not for the TOS diagnosis. I saw a chiropractor who seemed to help lessen the pain, numbness and muscle spasms for a day or two but it always came back. Seeking out help in the beginning gave me some hope even when nothing felt entirely successful. Finally, after 10 months of physical therapy, I resorted to one carpal tunnel release surgery. I had to see three doctors before anyone would help me, they said I was “too young for CTS and that TOS was not a real diagnosis”. I chose to ignore those doctors. The CTS surgery helped the chronic numbness on the right medial nerve but did not help the weakness and chronic pain or the numbness on the pinky side of hand. The recovery after the surgery was painful and I immediately regretted having had it. I began to resign myself to a life of chronic pain and, against the doctor’s advice, I refused surgery on my left hand. I couldn’t type, turn a door handle, play horn, piano (or any instrument), lift weights, swim, do yoga, run, or even sleep without pain/numbness. My friends carried my bags for me, I was limited in what I could do but managed to get through college with support from my peers and the college faculty. Getting through my undergraduate years was the hardest thing I have ever done. After graduating from college I got a great job teaching, conducting, and doing some performing oversees. The pain continued, I still struggled to perform, write reports for my students and with everyday life activities but I had a salary so I saw every type of practitioner I could find. I saw an osteopath, acupuncturist, shiatsu masseur, sensitive masseuse, dietician, and even a healer. No one at that time had heard of TOS so I stopped mentioning it and I stopped identifying with the diagnosis. Everything helped a little but my issues always seemed to come back. Next, I read a dated Alexander technique (AT) book that explained the concepts of AT. I went to an introductory class to learn more about the technique and how I could improve my posture and the ways I used my body. It was interesting because it introduced me to learning how to use my body differently. I learned that we can become more aware and change the way we move and breathe in the world. The more I did this the more I started to undo chronic patterns of tension taking lessons and using the technique’s concepts. From all of the modalities I had studied and tried I was starting to see a domino effect that when the pain in my back (sitting, working, playing etc) would intensify it was only then that my arms, neck and hands started to cause me more trouble. If I used my hands too much, my neck and back would hurt. If I turned my head quickly I would get a shock on the right side of my neck. 

Eight or nine years after my initial diagnosis I started taking AT lessons. I only took one lesson every two weeks but I mysteriously started to feel better after my lessons. I learned how to sit, stand, do computer work and hold my instrument with less stress in my body. My pain lessened significantly and the positive effects of a lesson lasted much longer than the other modalities. This did not happen overnight but it happened. After I successfully graduated with a MM in horn performance I continued lessons every few months, I was seeing big improvement and felt I wanted more. I trained as an AT teacher and within two-three months I felt what I had been waiting for. The dreadful pain in my upper back was gone!!! It was the first time in my life I knew what it was like to not have constant pain in my right shoulder. It was one of the best moments of my life-I felt free and thought, “this is what everyone else probably feels like-normal and without pain”. That was nearly twenty years ago and today and pain or numbness, if it happens today is rare and very short lived. I still need to be aware of my use working out, practicing, and finding the right combo and balance of activity and muscle tone but I can do pretty much anything I want now.

 I realize AT might not be for everyone but, for me, it changed my life, the quality of my life, improved my performance, breathing, anxiety, and taught me so much about my brain-body connection. It also gave me the skills, experiences, and arsenal of tools I needed to address my pain, tension, and performing issues if they arise. I am hoping this book will do the same for you.