“Fortunately”, the pain from my neck injury was so severe that it was taken seriously from the start.
I have chronic pain from several sources but the most serious and debilitating resulted from a herniated disc at C6-7 caused by, of all things, a coughing spasm.
It has left me with neuropathic pain affecting my neck, shoulders and upper arm, mainly on the right side. There is also a tingling sensation in my right middle and index finger. That the disc injury was caused by a coughing spasm is good for a laugh, but not too hard as it aggravates the injury!
The problem was diagnosing the pain. The first reaction when I eventually presented at the emergency department was to hook me up to a heart monitor. I caused a similar problem in the reception area of a cardiologists' office when I suffered an excruciating spasm of hideous pain in my upper arm a couple of years ago.
The actual diagnosis was made by a post-graduate physiotherapy student at the University of SA (I had gone to their teaching clinic to sidestep a delay in the hospital system). Medical imaging has been problematic due to the discomfort of the procedure. An attempt at an MRI had to be aborted because lying down on the table was so painful – I didn't even get a chance to be claustrophobic!
My first experience of chronic pain was joint pain at around 10 years of age. Subsequent sporting injuries affecting my feet and lower back and hips added up but the neck injury in 1999, mentioned above, was the tipping point into the utterly unbearable.
For some time, pain management consisted of maximum dose Panadeine Forte and sitting in a chair at home until I started to nod off (quite painful with a neck problem) whereupon I would go to bed and sleep until the balance between pain and tiredness shifted back to pain and I would go back to the chair.
Following an adverse reaction to an anti-inflammatory drug that had been prescribed for me, it seems that my brain got tired of registering severe intense pain and stopped. This left me with just a continuous low level pain and the tingling.
It was around this time that I saw an episode of the ABC program “Quantum” on pain that mentioned the use of anticonvulsants to treat neuropathic pain. I happened to bump into an old friend who had trained as an anaesthetist and in catching up on old times he mentioned Gabapentin and the fact that it was not available on the PBS for pain management.
I requested that my GP refer me to the Pain Management Unit at Flinders Medical Centre. After assessment I was prescribed Gabapentin and the tingling sensation was dramatically reduced. I was still having problems with episodes of intense pain. Kapanol was prescribed and later Paracetamol was added to the cocktail. More recently the Gabapentin was replaced by Pregabalin.
A couple of years ago we tried a nerve block. The tingling disappeared for four weeks to the day and then came back with a vengeance. I was subjected to intense electric sensations firing down my right arm into my fore and middle fingers. Not for me.
Currently I am on the Pregabalin/Kapanol/Paracetamol cocktail. This reduces the tingling and the intense pain although I am still subject to severe episodes.
Looking back, I am very fortunate that I have a mindset and circle of acquaintances that enables me to search out information and navigate bureaucracies. To many people this is a foreign country with hidden border crossings. Finding your way through all this when your thought processes are already impaired by pain is a bit much. At least I've been able to help a few friends and strangers through the system.
There are certain ever-present elements of my pain that are untreated by my pain management regime:
• Tiredness: In addition to the side effects of the medication cocktail, dealing with the actual pain is very tiring. Although the medication may bring some relief from the sensations of my pain, the fact is that my body is still coping with the pain itself. This is tiring and reduces my powers of concentration.
• Loneliness: Unlike the more pleasurable sensations in life, actual pain cannot be shared. I've often wondered which is the more difficult – being in intense pain or watching a loved one suffering intense pain, powerless to share the burden. Whichever one, the fact of pain creates a social barrier that takes a lot of effort to overcome.
• Inability to sit for long periods: A feature of my pain is that it is very difficult for me to stay seated in the one position for long periods of time. This makes attending concerts, theatre and cinema problematic as well as attending meetings, reading and sitting at a computer terminal.
• Inability to engage in my usual physical exercise: I am no longer able to engage in walking as I used to, nor am I able to engage in the physical activity of singing and playing musical instruments to the degree that I used to.
• Depression: The above elements combine to create a depressive emotional weariness that, at times, just sits on me.
An additional problem is that the unpredictable nature of episodes of intense pain render me essentially non-functional.
Having been a professional musician at the time of my injury I immediately became unemployable.
The whole point of the job is that you turn up at the same time and place as the rest of the ensemble and the audience. I've since realised that almost all employment requires the employee to turn up at a given place at a given time to perform a given task – something that I cannot honestly guarantee.