I am often asked what “my story” is. Everyone who has suffered from Tension Myositis Syndrome (TMS) or a Psychophysiologic Disorder (PPD) has a long, tortuous story to tell – that is, if they are lucky enough to have found a TMS-trained physician or therapist who has helped them step off the Merry-Go-Round Epidemic of Chronic Pain in the 21st Century.
So, I’m posting “My Story” today. My goal in posting such an honest account of my experience is to allow others who suffer from TMS/PPD a window into another’s experience, so that they may see themselves and find hope that they too can recover. PPD is a trickster. It can make you believe you will never get better, that every one will get better but you. Often, it helps to see that someone else had the very same symptom and recovered.
I can’t say when my story began. As I look back, there were signs in my childhood that my body was crying out. But, the big problems that I could no longer ignore started in 2003 while working in a fast-paced, high stress medical practice – too little time with patients, too much time at the computer and doing paper work, too little sleep, too few coping skills to effectively mitigate the stress. I developed pain in my elbows which quickly blossomed into disabling “repetitive strain injury” which resulted in my having to stop work.
For the next 10 years, I stumbled from treatment to treatment trying to figure out what was wrong with my arms. Meanwhile, I collected more symptoms as time went on. Well-intentioned practitioners offered me their expert advice and treatments, doing their best to help me, to no avail. Some treatments would help for a while, but the symptoms would always return – or would go away only to make way for another, new symptom to appear.
I was only able to return to work for brief stints, ultimately being brought to my knees again by the intense computer usage – or so I believed that was the cause. At times, my symptoms made it difficult to lift a dinner plate much less anything of weight, clean my house, walk more than a few feet, or socialize. It affected every aspect of my life – my work, my family, my marriage, my social life, my health. There was not a single aspect of my life that was not impaired. Since most of my care occurred in the alternative medicine world, I spent a great deal of out-of-pocket money trying to find the answer. It was exhausting. It was devastating. It was terrifying.
Eventually, one of my physical therapists referred me to Dr. Howard Schubiner’s website. Upon reading the information there, I knew immediately that this was my problem – my mind was causing all of these physical symptoms! What a relief! I could recover from this! Despite nine years of medical training and being board-certified in both psychiatry and internal medicine, this never occurred to me. In medical training, we are not taught that the mind can cause physical symptoms. What a huge relief it was for me to find a TMS-trained physician who knew the truth, was willing to tell me the truth – in a compassionate way and offered a treatment! This affirmed my experience and gave me a way forward – a way home.
From there, I was referred to Alan Gordon’s Pain Psychology Center in Los Angeles. Compared to what I had gone through during the prior ten years, the treatment was a cake walk. Though it took time to undo all the fear and autonomic nervous system activation I had built up over a lifetime, recovery was steady. Most of my symptoms were gone within a few months and within a year, I began training for my first triathlon, which for me, was a celebratory marker for my healing.
Below are the TMS symptoms I had and the treatments I underwent. The quotes contain diagnoses I was given.
My TMS Symptoms:
Bilateral forearm pain, tingling, numbness, subjective weakness (“repetitive strain injury”)
Trapezius/neck muscle tightness, swelling, tingling, sensitivity to touch (“long neck syndrome”)
Hyperacusis (sound sensitivity)
Ear pain, popping, pressure changes
Temporomandibular Joint pain (“TMJ”)
Jaw clinching resulting in multiple cracked teeth
Upper back muscle spasm
Lower back muscle tightness
Buttock Pain (“sacroiliac joint pain”, “pyriformis syndrome” and “asymmetric pelvis”)
Lower back and leg pain (“sciatica”)
Ankle pain (“peroneal tendonitis”)
Knee pain (“chondromalacia patella”)
Femoral Muscle strain
Ham string strain
Rectal muscle spasm (“endometriosis”)
Nighttime urinary frequency
Multiple food sensitivities
Bilateral hand tremor
Workups, Specialists and Treatments:
Orthopedic Surgeon – normal lab work, nerve conduction studies, and cervical MRI
Ear, Nose and Throat specialist
Audiologist x 2 – unable to tolerate sound generators for hyperacusis
Acupuncturist x 3 different practitioners
Alternative medicine physician x 2 – prescribed bio-identical hormones, vitamins, supplements and herbs
Physical Therapy x 4 different practitioners
Massage Therapy – too many to count
Myofascial Release Therapy x 2 different practitioners
Mindfulness Meditation and Yoga – while I was unaware of the TMS diagnosis, these did not help at all; now, that I have recovered, I find them very useful to help me stay centered and calm.
Food Sensitivity Antibody Testing – I was told I was sensitive to 13 different foods; my diet became impossible.
What I find most concerning about this experience is that it not unusual. Many people suffer from chronic pain today and they are all on the Chronic Pain Merry-Go-Around – cycling through the hope and disappointment, over and over again, with each attempt at a new treatment.
My goal is to reach as many chronic pain sufferers as possible – to help them step out of the pain-hope-disappointment cycle and get back to the lives they left behind.