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.

 

 

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5 Responses to My story

  1. […] And finally the website of the practitioner who introduced me to the work of Dr. Sarno. His name is Hal and he recovered from R.S.I and chronic fatigue using the methods explored in this article. He’s a very nice guy and wealth of information. Be sure to contact him with any questions you might have. […]

  2. Diane says:

    Hal, I read your story so far, and can genuinely understand, as I suffered with fibromyalgia for years. Spent a fortune on different treatments. One day I was so fed up I typed random words on healing into google, and literally stumbled across Dr.Sarno. I have read his 3 books. I have been healed from pain for 2 years. I now find TMS syptoms emerge as different symptoms like anxiety. Using your mind to treat these symptoms are harder, but can be done. We don’t appreciate the power of our own brains/minds.

    • hal says:

      That is great to hear Diane! Yes I must say I do find it extraordinary that there are still so many people suffering with fibro and related mindbody illnesses who have lost hope or are still unaware of how using the mindbody connection could help.

  3. Lynne Kenny says:

    Maybe Hal when you keep taking money off people that are seriously mentally unwell you should think about the consequences for that person of you not encouraging them to get the right treatment such as medication etc instead of filling there head full of stuff that is not going to help them and in the mean time they are unsafe and causing harm to themselves and could possibly harm others this is a very dangerous and unsafe way to work. Shame on you

    • hal says:

      Hi Lynne,
      Thanks for taking the time to comment. I’m not sure why you are so hostile to the idea that many mental and physical illnesses can be treated without drugs… anti depressants for example are only designed to be a temporary management and they do not address the issues which inevitably underlie the depression. Even if there is a genetic component I am not a believer that depression is a purely biological phenomenon and I think this is consistent with the evidence.
      Sincerely,
      Hal

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