0 - 1 year 9 months

In 1992 I was working on my Masters in Engineering. This involved much computer use. I found my work very stimulating and exciting, but often things (as always with computers) would take much longer than I expected. I did not do a great volume of typing (words per minute) but would spend hours (up to 15 a day occasionally) in front of the computer without significant breaks. Always sitting in the same positions, hands ready next to the keyboard, and often in some state of excitement (or annoyed/angry). (We are currently taking out an internationally patent on a television coding technique I developed).

When not working I did alot of cycling, swimming and running, and competed in triathlons. I have always been quite fit. I also spent my spare time tramping, climbing, kayaking, and caving. These activities were my idea of relaxation. I did not like to waste my time doing nothing constructive, and would feel guilty or annoyed if I did waste time. I would tend to work or train/tramp in bursts, whilst the adrenaline was running, full on, then switch to something else for a while.

I began to get pains in my neck whilst sleeping on my side, and when swimming, and pains in my arms and hands after computer work. After a year I began writing my thesis, and working 12 hr days 7 days/week for several months (a common regime for students writing up a thesis). My symptoms became alot worse. I had to give up computer usage and work on my thesis and try to get better. Unfortunately, despite lots of physio and massage I continued to get worse, cycling between slightly better, then doing something and getting much worse. For a long time I ignored the pain to a large degree and continued with all my activities, convinced that it would eventually go away (I had always recovered from injuries in the past, and seldom saw a Dr about things). However these activities only seemed to make the pains worse and eventually I had to give up swimming due to hand pain and weakness, cycling due to neck pain, and running due to an unconnected knee injury. My fitness began to deteriorate and my pains worsened and spread. I tried to avoid activities that worsened the pain, but more and more activities began to fall into this category.

I did not have a regular Dr in Chch, but saw one at the Sports Medicine clinic (whom I had seen about my knee injury a year previous (which he and the physio he recommended had not fixed)). He did not have much to say about my symptoms, but sent me to the physio I had seen before. This physio did very little hands on work, mostly trying to get me to correct my posture (in the wrong manner it later turned out), and told me all the pains in my hands and arms were referred from my neck (which was also sore)).

Although I had given up work on my thesis, I did continue to do research, in a large part due to pressure from my supervisor I prepared half a dozen papers for national and international conferences. I was placed under considerable stress to achieve prepare these and in presenting at conferences.

During this time I had a consultation with specialist, Dr. Turner. He diagnosed me as having OOS and recommended further physio, including deep transverse massage to my hands, cool and stretch after Travell and Simons, as well as regular stretches and breaks whilst working.

I had by this time changed to a new physio who supposedly specialised in treating OOS. She was definitely better than the last, doing alot of myofascial release, and giving me some muscle and nerve stretches to do. Unfortunately this physio did not follow Dr Turners instructions directly, she did not appear to believe Dr. Turner's recommendations were necessary. I trusted her judgement to be more informed than mine and so did not challenge her treatment. (Also, I did not at first have a copy of the specialists report, though the physio and my Dr did. Why is it that when you pay an enormous amount of money to see a specialist you are the last one to hear the specialist's decisions. I had to convince my Dr to give me a copy)

1 year 9 months - 2 years

In view of my worsening condition and inability to continue working I decided to return to Wanganui, and stay with my parents for a couple of months. I had intended to spend the first month or so recovering, then regain fitness, and spend the last month having a long overdue 'holiday'.

For the first month I followed a programme of rest only, with some aerobic activity (walking), but no use of the afflicted areas. In all the books I had read on RSI simple rest was put forward as being the most effective of all treatments.

Unfortunately the pains did not reduce, and I became more and more sensitive to any use of my arms/hands. Brushing my teeth, holding a telephone receiver, or using a knife and fork, were all painful activities. In despair I rang Dr. Turner in Chch. He suggested I try some Acupuncture. I began seeing an Acupuncturist once a week with a small reduction in symptoms. More importantly I began to get some motivation about treating myself for my symptoms. As well as seeing the Acupuncturist I began to try out some of the treatments indicated in Dr. Turners specialist's report and also treatments described in a section (see attached - Myofascial Pain Syndromes of the Head and Neck [1] out of a recent medical text written by Dr. Turner [2] . This included Ischaemic compression (Acupressure), cool and stretch after Travell & Simons [3], deep massage. I began applying these treatments myself. It was very painful, applying ischaemic compression to the active TPs was sometimes so painful that I would get dizzy and begin to sweat. However, within several weeks the pain had considerably reduced, using a regime of Ischaemic compression, followed immediately by cool & stretch, and then a heat pack on the area, this done several times a day. At first massage was too painful and did not help, but after several weeks I began to use massage as well, once a day. (For a detailed description of these techniques see ).

After a month the pain level had been considerably reduced. However, perhaps after the many months of doing little, I was quite weak, and many activities would quickly start causing problems.

However, for a number of reasons I had to return to my flat in Christchurch, and the University, and I hoped I would be able to continue my recovery there, now that I was making progress.

2 years - 2 years 5 months

I Christchurch I attempted to regain some fitness, doing a bit of cycling, jogging and some using some free weights I had at home. However, I was very sensitive to doing the wrong activity, or doing too much. Unpredictably often, I would overdo something a bit and the TPs would all reactivate. It would then take me several weeks to get them back under control, meanwhile I had to stop many activities to prevent the worsening of my condition. I was often reluctant to stop all activity again, to give up the ground I had gained, but the longer I waited before pulling back the longer it would take to recover. I still had problems with neck pain and my posture, so tried to apply the techniques my original physio had instructed, pulling my shoulders back and tucking my chin in at all times, this did reduce the neck pain. Unfortunately I began to get pain in my back as a result, and developed TPs in the Trapezius.

I was also under quite alot of stress at this time. Our landlord sold our flat and I had to find another. However, I did not get on well with my new flatmates and began a period of continual flat hopping. This placed tremendous strain on me, trying to hide my problem, get on with people as well as shifting gear whilst in alot of pain. I was also very worried about my future, unable to study properly and unable to indulge properly in any of the pastimes I had enjoyed in the past, for fear of worsening my condition. The seemingly unpredictable nature of my symptoms (sometimes an activity would be OK, next time it would cause all TPs to reactivate and take weeks to recover from), also added stress.

In many ways the worst bit was not really the pain in doing an activity, but the knowledge that I might have weeks of pain afterwards as a result. In fact the precipitating event was usually not painful at all. I would try to swim, or write, and would be pleased that there was no pain. Whilst doing the activity my body would remain pain free, BUT several hours later, or perhaps the next morning, all the TPs would be reactivated. With no pain in doing the activity I was seemingly unable to predict what activity might cause problems and what might not. The fact that I was powerless to predict, control and prevent my pain was, I believe, by far the most demoralising aspect.

I tried pain killers for a while, but when I stopped them the pains would just come back twice as bad. So I decided to avoid pain killers so that I could at least use the pain as a guide to whether I was making things worse. I was also concerned at being able to hide the pain with painkillers and meanwhile cause further damage to myself.

The sum total of this was that I ended up going backwards more than forwards (one step forward, two steps backwards). I had become very good at deactivating TPs, but could not stop them from reactivating.

Massage and other treatments only gave temporary relief. I became depressed and frustrated, especially at the seemingly unpredictable nature of the symptoms. I began to lose contact with friends (who could not understand my condition and its severity), avoided external activities and went into social withdrawal to a large degree.

I also began to get other problems. I became sensitive to heat, strong light, loud noises and any excitement or stress. These would worsen my symptoms.

During this time I worked hard to find out treatments for my condition and to develop an understanding. I tried all the treatments listed that I listed to you, but despite temporary improvements I always got worse again, usually more so than before. I researched in medical libraries to find any information on the condition that might help.

The specialist Dr Turner said that I needed to try and accept my disability and develop pain management techniques. I did not want to accept this, but it looked very much as if my life would never be the same. I would never be able to enjoy many of the things I had in the past. What concerned me most however, was that my symptoms were not stationary, they were continuing to worsen all the time, and spread. I could not live the rest of my life in increasing pain and disability. To add to this Dr. Turner had indicated to me that I had some chance of developing fibromyalgia. To quote exactly, I asked Dr Turner what my chances of developing fibromyalgia were, he replied "You may not".

(The tone of these last paragraphs perhaps reflects my feelings at the time, I hope it doesn't sound too melodramatic).

At the end of this time Dr Turner placed me on the sickness benefit. Up until then I had been borrowing money to live on and pay for my treatments.

2 yrs 5 months - 3 yrs 5 months

I returned from Christchurch where the University was, to Wanganui to stay with my parents, I could no longer pull my weight in a flatting situation.

I decided I would concentrate all my efforts 100% on trying to get better, or at least finding a way to manage my condition at a pain free level. I did not know whether it was possible to do this or not, several doctors I had seen (I saw another rheumatologist, and my family doctor), did not seem to think so. I was committed to spending as long as a year at home with my parents.

By this time I was in constant pain. I was sleeping poorly, was depressed, had pain in my hands arms, neck, shoulders and back. The symptoms were virtually identical on both sides, consisting of on each side approx. 9 trigger points (TPs) in the hand, 2 in the upper forearm, 1 in neck, 2 in shoulder, and two in trapezius in back. I am not sure how these points match with the 'standard' FM points, however, they were in the normal points shown on a standard physios TP chart. I was no longer able to type, could write a few minutes. I could not drive. I had pain in holding a knife and fork, brushing my teeth, and in dressing and personal hygiene (started growing a beard to avoid shaving). Basically all activities caused pain, and more frustrating, I was uncomfortable and in pain even when doing nothing.

I also began to suffer from irritable bowel syndrome, and a constant knot in my stomach, and bouts of 'neuropathic' pain (as labelled by Dr Turner). With the neuropathic pain I would feel as if all TPs had been re-activated, my hands/arms would feel weak, my skin crawled, I would feel unwell and sensitive to any activity.

To undertake the recovery I intended to use every treatment and idea I had come across, use them as correctly as possible, and hopefully by combining everything, 'turn the tide'.

Thus began the 'Recovery' that finally seems to have produced a 'cure'.

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