A journey through the mind-body maze.
When my wrists first started hurting I wasn’t at all worried about it.
I had had plenty of simple strains and muscle pains before and they all seemed to go away of their own accord, so why should this pain be any different? Fast forward two years and what had started as occasional wrist pain had morphed into a mysterious chronic pain syndrome which left me effectively incapacitated. I was a walking bundle of muscle and joint strains and sprains which wouldn’t heal. Whenever I moved or did the most basic activities I experienced significant pain in my wrists, shoulders, neck, lower back, thighs, ankles and feet.
The vibrant, creative person I had been throughout my mid twenties felt like someone I didn’t know. I found myself unable to walk further than 25 metres at a time, to go down stairs, or perform many of the basic activities of daily living without significant pain and fatigue. I couldn’t sleep properly. I felt scared of the unknown, of this mystery illness that had befallen me. I felt even more scared when I realised that it might last a lifetime, given that my multitude of symptoms could be diagnosed as either Fibromyalgia or Chronic Fatigue Syndrome, neither of which had curative treatments at that time.
The journey to this point had been, well, painful. Rewind back to 2000 and I was wondering what to do about RSI / myofascial pain in both of my wrists. The pain, that was particularly bad after typing or playing my bass guitar was not going away. I was doing long hours of dextrous activity with my hands in a cold Melbourne winter. I went to see my trusted long term GP and he asked me “Can you rest?”. I explained to him how I had become essential to the functioning of my small business and my two original bands, and it would be a bad time for me to down tools in either occupation. He gave me some anti-inflammatories which I faithfully took but there was no change in the pain.
A friend recommended a highly experienced physiotherapist in Brighton who I consulted as soon as I could get there. He gave me a soothing massage, whilst proudly telling me about some of his former clients including Mark Knopfler, lead guitarist of Dire Straits when they were on their Australian tours. I felt I was in good hands and stuck with his treatment program which included massage and strengthening exercises. Unfortunately though I found that my wrists would hurt during and after the exercises so after a few weeks I started looking elsewhere.
I had always had an interest in holistic approaches to health so I saw a well recommended local acupuncturist for 6 sessions, which seemed to make a difference just after the session but without any lasting benefit. He was a lovely guy but seemed to be disappointed in me that I was still in pain.
After a few months I realised that the pain was not going anywhere. My friend Emma who was a medical student had been warning me for a few months against continuing activity when I had pain. She had heard in her training of people getting chronic pain that didn’t go away, if they didn’t respect the body’s signals to slow down for a while. I didn’t want to but it was getting to the point that I had to stop doing the things that I loved, in order to try fully resting for a while. Playing live music in two original Melbourne bands dropped back to one, then none. My successful web development business was now a rather unpleasant occupation given how dependant I was on the use of a mouse and keyboard. “But hey,” I thought, “things are pretty bad, but at least I can rest up and the pain will go away”.
The unfortunate thing was, I did start resting, but the pain didn’t go away. I began to get quite anxious at this stage. I was still taking the anti-inflammatories the doctor gave me, and resting as much as possible. But the realities of life made it hard… I had a business to run and no one was going to pay me if I didn’t finish work for my clients. I had no income protection insurance and not a lot of savings. I started using IBM’s Via Voice software to cut down on my typing but found it infuriating to use and highly inaccurate in its voice transcription. So I resorted to paying a friend to come and sit with me by the computer, typing and helping me with manual tasks to save my wrists.
At the same time I started searching more widely for solutions, seeing a deep tissue massage therapist who thought that scarring of the muscle tissues could cause the pain. If his massage could breakup the scar tissue and I could rest properly, perhaps the pain would go away? Unfortunately not, it just hurt even more while he was doing the massage then subsided to the now ‘normal’ hurting while I performed any activity with my hands. I now had chronic pain! Yikes!
As the weeks rolled on, numerous compounding stresses mounted up. I was starting to feel the financial pinch now of needing to pay someone to transcribe my typing in my web business, and other programmers to do the technical aspects of the work. Not to mention paying cash for my therapy sessions. The pain was also starting to affect my social life in strange ways. I avoided shaking hands with people given the aggravation it created to do this. My love life had gone from an exciting and pleasurable part of my existence to a painful, depressing reality reminding that my hands are required for almost every aspect of human life. Many of the most ordinary activities I had always taken for granted were now pain producing, so I tried to avoid the ones I could and winced through the rest. A complex range of emotions now accompanied my pain, as I went from flare up to flare up, so I would feel sad, scared and frustrated usually at the same time.
I was really kicking myself that I hadn’t heeded Emma’s advice to rest straight away, as I now seemed to be stuck with a severe case of bilateral Repetitive Strain Injury or “Forearm myofascial pain with chronic features” as my doctor preferred to call it.
Visiting my parents in Canberra I discovered the RSI and Overuse Injury Association of the ACT who were very helpful and well organised. The convenor of the group spoke to me at length about her own experience with RSI, which scared me a bit to realise that despite trying to get better she still had it. She also provided a useful perspective that life can go on despite having chronic pain. I borrowed a couple of books from their library, and found it refreshing that people had written articulate works on the subject. Pascarelli & Quilter’s “Repetitive Strain Injury: a Computer User’s Guide” was well written and structured, but somewhat light on for hopeful insights into what might help me to get better. They seemed to be saying that once RSI gets very bad it is hard to make a full recovery. Doh!!
Back in Melbourne I continued to try various treatments which might make a difference. Nearly every alternative therapist I spoke to said they thought they might be able to help. They were great with providing hope, but, as I later discovered, greatly disappointing at providing any results.
I was wondering if the pain was a kind of a wake up call, a sign that I needed to change my life in some way. I had read Louise Hay’s classic “You Can Heal Your Life” a few years earlier and she described how so much healing can take place by heeding the symbolic significance of physical symptoms. I didn’t feel that great about so much of my life being swallowed up by computers so I began to imagine a life beyond my web consultancy. Healing and environmental activism had been my two main interest before starting my business, and with these in mind I started to sense into ways I could surrender my current occupation for something deeper and truer to my calling.
I started studying Holistic Kinesiology at the Australian College for Energetic Sciences in Carlton. It seemed like such an all encompassing framework for helping people, covering energetic diagnosis and treatment of the physical, mental, emotional and spiritual realms. The staff and students were lovely and I held a quiet hope that my departure into a career closer to my heart would be rewarded by greater physical health. Unfortunately I didn’t seem to get any better, and many of the physical aspects of the course were challenging to my now chronically aching wrists.
One day in particular I was struggling with the stress of trying to balance work and school whilst being in pain. I was rushing to school after work, running down Grattan St from the Swanston St tram and I suddenly felt a terrible pain in my ankles. I was late to get to an appointment with the finance officer at school so I kept running for a few moments only to realise I had done some kind of strain or sprain and I really needed to stop.
I hobbled in to school and had my appointment then wondered what I should do about my ankles. There didn’t seem to be any ice around so I caught a taxi home and rested up at home with some icepacks, eager for my new injury to be treated promptly and properly so I didn’t end up with more chronic pain. I was really feeling sorry for myself at this point, hobbling around at home, trying to look after myself but realising my ability to live independently was being seriously challenged.
One of the things I was rapidly realising by now was how dependent I was on other people – dependent in a bad way. My housemates (I lived in a wonderful share house in Kew I had established with friends a few years earlier) were great people but the added strain of living with a physically incapacitated friend who isn’t getting better was starting to show. Dishes need to be done, meals need to be cooked and cleaning in a five person sharehouse requires eternal vigilance. So despite reorganising chores to suit my abilities I found myself in a psychological struggle to maintain dignity in the eyes of my friends. And now I really needed to rest and be supported, determined that my ankles (or rather my Achilles tendons which seemed to be the site of the strain) wouldn’t turn into another poorly managed injury. But how do you do that when you are single, and don’t have any family in Melbourne you can call on? I did have a great group of friends and when I asked, they were happy to provide some help, although the realities of asking for regular support from a diverse group of already busy people left me feeling like I was at risk of slipping through the cracks.
After a week of the best rest I could manage in the circumstances, my Achilles tendons had improved a bit but were still hurting. Now it seemed I had chronic inflammation and pain in not two, but all four of my limbs. The more I used them, the more they hurt. If I didn’t use them however, the pain would pretty much go away. It seemed that rest was the only thing that really helped.
Given the worrying decline in my physical state I thought it prudent to go back to my doctor and get his opinion. He was looking less and less happy to see my distressed state and gave me a referral to a respected rheumatologist at the Monash Medical Centre nearby his clinic. I faithfully went to see her and she recommended some more tests (the ones previously undertaken by my GP hadn’t yielded any medical clues). She was at a loss for what might be going on, and the tests for some more exotic conditions I cant remember the names of didn’t show anything either.
Although things weren’t looking great I was enjoying the opportunity to try more forms of complementary medicine, being greatly interested in the paradigm shift in approaches to wellness that had swept the west in recent decades. It didn’t seem right to me on some level that western medicine’s deeply reductionist approach to knowledge could yield a truly successful form of healing. So whilst I respected the views of my doctors and of some aspects of their intellectual framework, the reality was that they had little to offer me. I was drawn to experiment with more holistic forms of diagnosis and treatment.
I tried numerous forms of massage including bowen, shiatsu, western myotherapy, as well as more deep tissue all to no avail. Another highly recommended acupuncturist for a few sessions. A couple of the most experienced (and expensive) holistic kinesiologists in Melbourne. Pranic healing. A couple of other therapies that I cant even remember the name of now, and as I reflect on the wild theories and bizarre practices that went on in some of the sessions, I not sure I want to remember!
The result? Bank balance – 0, pain syndrome – 4. I spent a lot of money and time and didn’t get any better. There did seem to be a pattern emerging which my scientific brain couldn’t help noticing. I would get hopeful and excited about a new form of therapy, go and see them for an initial consultation which was very promising, do a few sessions and feel that something was maybe starting to improve, then continue with the treatment only to realise there wasn’t any significant change. Whatever change I was feeling might have been a placebo… my first inkling that there might be some kind of mind-body aspect to the chronicity of my pain.
The year drew to an end and my experiment with studying kinesiology and getting my life-direction sorted was also yielding little in the way of pain relief. I was also feeling unsure about many of the theories I was taught… they seemed so simplistic and to overstate the ability of the practitioner to understand what is going on for the client. As for how they were arrived at in the first place… a hotch potch of hypotheses, case histories, channelling, and faith might be OK if the recommended treatment works for every client that you see but I couldn’t see that happening.
It was now a good two years into my chronic pain ordeal and my sense of desperation was steadily increasing. I had gone from being successful and creative, and widely respected in my community to feeling constantly stressed, a bit depressed and generally worn down. I was losing weight which from a starting point of 68kg was not ideal. But worse, I was losing those friends who preferred the successful, entertaining Hal over the burdensome new person I had become.
My business was still functioning but despite kinesiology not being the right way out of my predicament, it was still clear to me that I needed to let go of what I had been doing for the last few years. Perhaps in letting go, the answers would come. I found a buyer for the business and thankfully was able to get some money to keep living and paying for treatments. I was effectively earning nothing in the business and had to go on Centrelink’s ‘Sickness Allowance’ which was a pitiful equivalent of the dole, with no financial support offered for non-western treatments which might get me back to health.
So where to from here? I decided I needed to dedicate myself 100% to healing, and to set up a comprehensive and supported rest and rehabilitation plan. I had some money in the bank from selling my business and it was time to make some changes. I bought a new car which had power steering and an automatic transmission so when I really needed to drive I could do it without the aggravation caused by an old manual car with heavy steering.
I decided to move out of my current house and found a new place with some people I didn’t know so well. I explained to them my predicament and they were open to negotiating an arrangement of housework etc which would work for all of us. I kept an open mind in terms of treatment, trying still more western and complementary therapies. I was determined to get better.
One therapy I did experience some benefit from was the (home grown Aussie) Alexander Technique, a comprehensive approach to conscious postural correction, seeking a “lengthening and widening” particularly of the musculature of the back and neck. I spent about a year and a half regularly taking Alexander classes under the expert guidance of David Moore in Brunswick St Fitzroy. I noticed a huge difference in my experience of my voice and some improvement in my pain levels through diligent effort.
Day to day though things were still a painful grind. It was just so limiting not being able to walk any significant distance, or use my hands much, and now to also have to contract my financial expenditure greatly without a job… my anxiety levels were building up and up and I was in a state of chronic stress.
Unfortunately things werent working out in the new house though and my inability to contribute fully to cooking and cleaning was creating a tangible rub with my housemates. I was feeling less and less secure in the new house and had a new fear rising which was really quite terrifying. If things didn’t work out in this house and I couldn’t live independently anymore, I was going to need to ask my parents if I could move back in with them. At age 32! OK it sounds funny now but at the time it just felt like death… My parents, bless them, were quite conservative in many of their views and leaving Canberra to come to Melbourne had been a huge opportunity to break out and define myself for who I really was.
The thought of needing to move back home just filled me with dread. But what else was I going to do? I couldn’t afford supported accomodation, crash indefinitely with friends, and there were no hospital or residential programs available that would suit my situation.
In the meantime, my social life was going from bad to worse. My girlfriend at the time broke up with me, which came out of the blue and was just another heavy blow on top of my many woes.
I remember with a shudder one terrible night I arrived home after a party at which I was just feeling pretty out of sorts. I had drunk a few UDL cans and was feeling a little heavy as I went to bed, but had absolutely no idea of what was to await me in the middle of the night… I must have had a few hours sleep until I was jolted awake with the most terrible anxiety I have ever experienced… it was like a volcano erupting inside me as a massive geiser of fear exploded into my brain. Having never experienced an anxiety attack before it was just terrifying.
I had no idea what was going on. I called LifeLine in desperation, only to hear that no one was available to speak to me. I stayed awake the rest of the night pacing the house in a state of terrible fear and dislocation. I just couldn’t believe that this was what had become of my life.
Rock bottom
I knew I was at rock bottom, when it was clear that nothing was working anymore. I remember going to my Alexander Technique lesson and lying on the table. Nothing David was suggesting would help my body to lengthen or widen and I was lying in an exhausted, trembling state on the table. He asked me what was happening and I said, I don’t know, there is just so much anxiety I cant seem to relax or expand my body at all.
I was in an incredibly black mood after the session and spent some time sitting outside on the step overlooking Argyle St in Fitzroy. I couldn’t believe my life had come to this… struck down by a mystery illness which had robbed me of my work, my music, my love life, and the normal functioning of my body and mind. I had tried everything and now it was clear… Nothing worked, and I had no future other than a painfully disabled and insecure existence.
I racked my brains to think about what to do next. I was totally exhausted without being able to sleep properly or manage my spiralling fears. In the depths of my despair my old friend and mentor Yehuda Tagar who was a Steiner trained psychotherapist came to mind. I asked David if I could use his phone and I called Yehuda, laying out my desperation in plain language.
He said, “Look Hal why don’t you go Paolo Moraes at the Anthroposophical Medicine clinic in Warranwood. He is a Steiner trained GP and I trust him more than any doctor I know.”
I really, literally, had nothing to lose, so I called him and miraculously there was a cancellation for the last session of the day available. I booked the longest session available, put down the phone, and quietly allowed myself a tiny glimmer of hope amidst the inky blackness.
After resting a bit more it was time to go. I hobbled down to the street, hailed a taxi and jumped in. I remember the taxi sweeping through the streets of Melbourne and a curious feeling bubbling up inside. It felt like something was about to change.
Walking in to the session, Dr Moraes was a calm looking middle aged doctor. I was so exhausted I asked if I could lie down on his examining table as I couldn’t muster the energy to sit up and talk to him. He agreed and started to ask me about my medical history. I was impressed with his patience and thoroughness. He followed every line of investgation about the possible provenance of my symptoms with a considered clarity and focus. I unloaded the details of my terrible ordeal and my own frustrated speculations about what was going on. What was supposed to be a fourty five minute session turned into an hour and then an hour and a half. We left no stone unturned and by the end I felt a lot lighter as Paulo’s care and presence held a safe space for my wounded soul.
At the end of the consult Paulo paused and looked at me. He said “Hal, I do not know what is wrong with you. If I was to offer you a diagnosis it might be Chronic Fatigue Syndrome because you appear to have so much fatigue on top of your pain symptoms. I think you should go back to Yehuda and maybe see what he has to offer.”
I said my thanks and we concluded the session. I got up and started to walk out of the consulting room. I recall feeling that even though he hadn’t been able to diagnose me with anything definitive, I had been thoroughly heard. I had really been listened to. I felt a lot lighter and then it happened.
As I walked back into the waiting room to pay for the consult an intuition hit me like a veritable bolt of lightning. I have no idea where it came from, but to this day I can remember the intensity and clarity of this sense of knowing. It (i.e. my intuition) said simply “understand your relationship to fear and anger”.
At that stage of my life my intuition didn’t speak to me very much, at least not in that “lightning-bolt out of the blue that you cant possibly ignore” kind of way. So it was a huge inner event and now I felt a tangible sense of hope welling inside. My body was broken, but I now had a clear direction to pursue my healing.
Understanding the mind-body approach
As soon as I could get in front of a computer I started searching for connections between emotions and pain syndromes. I found the work of US rehabilitation specialist Dr John Sarno and ordered his book “The Mind-Body Prescription” from Amazon as it was impossible to get in Melbourne at that time.
As soon as it arrived I devoured the book. His theory was that stress and unconscious emotions lie at the root of chronic pain and fatigue…this dovetailed remarkably with what my intuition told me. His alternative diagnostic suggestion “Tension Myositis Syndrome” or TMS matched very well with my symptoms of pain, fatigue, insomnia and anxiety, and with my tendency to be a perfectionist and a “goodist” (Sarno’s term for someone for whom doing good is important). He observes that these traits are often present in people with chronic pain.
Since my intuitive realisation and the dawning of hope some of my anxiety had dropped away even though my body was still in a parlous state. Reading Sarno was like applying a divinely anionted intellectual balm for the soul. He laid out in lucid detail his account of the genesis of chronic pain and fatigue syndromes and with every chapter my excitement grew… at last! A proper diagnosis! The unconscious emotions were the missing link… the thing that none of my valiant 42 practitioners of healing had been able to help me grasp or even point to.
Sarno was adamant that the chronic pain was not stemming from my injured tissues anymore. Rather, he argued that tissues heal within days or weeks, and the ongoing pain is a response mediated by the Autonomic Nervous System as part of a whole-mind-body attempt to manage the stuff that was below the surface of consciousness.
I started to get physically better quite quickly at this point, after realising that the pain is not from physical damage from overuse as I had always believed. Eureka!
From here on, a virtuous cycle ensued in which less fear of the pain led to less pain, increasing my confidence in the mind-body approach, which in turn led to less fear of the pain that remained. It showed me in no uncertain terms how important the role of fear and anxiety are in the perpetuation of pain.
The other remarkable thing about that book was its description of the role of unconscious emotions in TMS. Essentially Sarno takes a neo-Freudian view that the pain and fatigue (or a vast number of other possible symptoms) are basically an autonomically mediated distraction mechanism, a way that the brain defends itself from painful emotions which are too threatening to allow into consciousness.
I started experimenting with trying to feel my feelings more. Each day as I awoke I would stay in bed for half an hour just sensing into my belly, dropping my consciousness as deep as I could, trying to feel more. Slowly the feelings started to show up, as I experimented more with sensing into and moving my body and breath. I also used journalling to explore and express my feelings through the written word.
I had to work consistently at identifying and letting myself feel the emotions which were blocked but it felt that as I did, each little release led to my body and mind feeling a bit lighter. Given the physical relief which ensued as a result (i.e. reduced pain) I experienced this as an exciting journey of discovery rather than a scary process.
To get some more support with this process, I tried Re-evaluation Counselling to help me understand my emotional self better, which was a great start. But later on I found that somatic / body based approaches to psychotherapy (in particular Radix Body Centered Psychotherapy) helped me to access the unconscious stuff more deeply and safely. As a major, major bonus I found that the more I did this style of work on myself my general level of wellbeing picked up immensely and other symptoms of depression / anxiety I had considered normal for years started to drop off also.
The rest, as they say, is history. These days I consider myself thoroughly cured of RSI / chronic pain / CFS. I still get the occasional twinge of pain which goes away rapidly when I apply my now well practiced mind-body approach to eliminating any symptoms. And when I am typing frantically to get something finished, or playing the drums loudly, or digging in the garden without pain, I often experience a sense of amazement and disbelief at how much my life has changed.
As well as Dr Sarno and the various people who helped me along the way, perhaps I should also give my intuition some of the credit as it was in fact this mysterious faculty of the self that pointed me in the right direction. Anyway, after spending periods of months in despair that I would be in pain for the rest of my life I feel extremely grateful to have my health back. I also have a much deeper understanding of myself and the reality of the mind-body connection.