Sally’s story: “Something which for nearly two years defined and disabled me is now a chapter of my past”

I knew I was in trouble when, a year after my initial lower back injury, I was still attending physiotherapy and getting no lasting relief from my pain nor any closer to a diagnosis. The injury had developed over a period of months of practicing advanced Pilates moves in my home, and had flared up one day after an intense session of these exercises and other gym classes. These exercises had been recommended by a past physiotherapist to build core stability and prevent a minor lower back strain from recurring. This time, the physiotherapist told me that I had ʻjammedʼ my left sacroiliac joint doing the Pilates moves with incorrect technique. The pain however had now moved away from its original site to the top of my left buttock and had taken on a tingly, tight and extremely uncomfortable quality. For months I diligently attended physiotherapy appointments in an attempt to find relief from my pain. I followed every instruction and treatment recommended including Pilates-based exercises targeting weakness in the area of pain, massage, ultrasound, acupuncture and stretching. New pains developed which actually started during some prescribed exercises which, according to the physiotherapist, I had done ʻtoo many ofʼ or at ʻtoo high an intensity. As I sat in the waiting room week after week I would watch other patients come and go as they were diagnosed and treated. This was the path that was intuitively ʻnormalʼ to me: you play sport and exercise, you push yourself a little too hard or are unlucky and are injured, you seek professional treatment, you recover. The fact that I was a year in without a diagnosis and with worsening pain said to me that my condition was ʻabnormalʼ. For someone who is easily worried, this was profoundly troubling. Along with physiotherapy I pursued other conventional treatments – chiropractic, acupuncture, steroid injections, all to no avail. I underwent x-rays, MRIs and CTs, all of which were inconclusive. If there was nothing ʻwrongʼ with me, why was I in so much pain and for so much of the time? The pain was emotionally and physically draining and interfered with my work, study and sleep. [I have addressed this in more detail two paragraphs below].
Every so often I would hear or read about the concept of ʻchronic painʼ and would dismiss it quickly on the grounds that it was irrelevant to my situation. No physician or physical therapy specialist had diagnosed me with chronic pain nor had they categorically ruled out a structural or musculoskeletal problem as the root of my pain. Besides, I was young, healthy, and prior to very recently, fit and active – not exactly your prime candidate for ʻchronic painʼ. What was chronic pain anyway? The term ʻchronicʼ was in itself disturbing and ominous, and an internet search revealed enough sinister ʻfactsʼ and stories to send even the most calm and rational mind into a state of distress. I was determined to keep searching for a diagnosis, for relief, for reassurance. The longer I went without these, the more fearful of never recovering I became. The number of pain killers and sleeping tablets I needed to get relief was increasing as my body seemed to adjust to their effects and as I became more anxious about my condition. My mental focus on the pain was growing and had become a near obsession. I stopped exercising altogether out of fear of further harming myself. I reduced my work and study load as I felt that I was unable to perform at normal levels. My mind was constantly distracted by the pain to the point where the most simple of mental tasks was challenging. It was also clear that the more I concentrated on study and work the worse the pain would become. I withdrew considerably from my social circles feeling that I was no longer the person that my friends knew and loved. It was so hard to be my usual upbeat and effervescent self whilst in so much discomfort. Contributing to my sense of despair was a lack of understanding from those around me – friends, family and workmates. By this I donʼt mean a lack of sympathy, rather, their difficulty in coming to terms with what was happening to me and why I was experiencing this level of suffering (especially being so young). Though well-intentioned, they were confused, and I felt isolated from my traditional support networks. My beliefs about my pain and its cause were confused and often pessimistic. Based on information I had picked up about my ʻbackʼsʼ anatomy from practitioners and personal research I generated a number of my own hypotheses. And without certainty from the medical profession my mind ran wild with speculation. An ʻunstableʼ pelvis, spasming or torn buttock muscles and a jammed Sacroiliac joint were just a few of the possibilities I had been given. Again my typically anxious mind was no help, always jumping to the worst case scenario and fixating on whatever that may be. On the other hand, I always maintained hope that I would find answers and eventually get better. Having exhausted all apparent treatment avenues to the cost of thousands of dollars I travelled across the country to consult a Specialist Musculoskeletal Physiotherapist who specialised in the diagnosis and management of chronic pain disorders at Bodylogic Physiotherapy. If anybody could get me ʻpain-freeʼ, I thought, it was him. He confirmed that I had no structural problem and I was diagnosed with a centrally mediated myofascial pain disorder (chronic pain). I believe the specialistʼs diagnosis was based on the absence of pathology in diagnostic tests and his observations of my behaviour and responses to my pain. He identified my inability to relax, fear-avoidance behaviour and hyper-focus on the pain as major contributors to the cycle of pain and trauma I was experiencing. The chronic pain diagnosis came as a blow. Contrary to my wishes and deeply held beliefs, the goal, I was told, was not to become ʻpain freeʼ. There are no known cures for chronic pain and so any further searches for a silver bullet to eliminate my pain would be futile. What I needed to do was learn to live with the pain. At first I found this insensitive and condescending: how could I possibly learn to live with something that was making living impossible? With a definitive diagnosis finally in my possession, when I returned home, I felt I had no choice but to accept the judgementand follow his treatment plan. As difficult as the ʻchronic painʼ iagnosis was to come to terms with, it was the most compelling explanation of my condition I had been offered to that point, and with no other treatment options left to pursue there really was nothing to lose. The treatment plan was based on best practice principles around the management of chronic back pain conditions. It involved therapy with a cognitive behavioural therapist and/or meditation teacher with the goal of learning new responses to the pain and developing strategies to circumvent the pain-anxiety cycle that had become so engrained. I was advised to resume exercise (mainly walking and swimming) on a regular basis (which up to know I had avoided out of fear of further harming myself), and to begin a low dose of Endep (a drug which aids sleep and dulls the sensation of pain). The low-dose Endep provided almost immediate relief, and returning to exercise (swimming, salsa and walking) was not only good for my physical strength and flexibility but also for regaining the confidence to move. Through cognitive behavioural therapy I learnt that the pain that was always with me was not a sign of damage or harm, but a response that hadbecome conditioned or learnt over time. My difficulty relaxing and constant negative thoughts about my pain were actually fuelling the sensation of pain and reinforcing the pain messages from the brain to the site of pain. Mindfulness meditation was a key tool in addressing these unhelpful behaviours and thought patterns. Practicing mindfulness has been the most challenging of my management strategies, however I believe it offers the most rewards. I am immensely happy to report that two and a half years on I am completely in control of my chronic pain condition. Importantly, I am not without pain. Instead, the sensation of and trauma around the pain has diminished dramatically and it no longer interferes with any aspect of my life. I just received a first class Honours and the University Medal, the culmination of the most challenging and rewarding years of my life. In 2008 I had an incredible time backpacking around Eastern Europe and the UK and I am about to embark on another trip to the USA and Central America. I have returned to my much loved dance aerobics three times a week,and feel that I am physically able to do anything I wish to. My overall mood and outlook on life is very positive and I brim with anticipation of all the new and enriching experiences that lie ahead. When people ask me “how is your back?” it takes me a moment to register what they are referring to. Something which for nearly two years defined and disabled me is now a chapter of my past.