The High Cost of Pain

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Your Stories

Dave: Doctor with pain

daveI'd survived the traumas of a major motor car accident, the ignominity of a prostatectomy, and the despair and exasperation of three separate cancers and their harsh therapies, but nothing had prepared me for the greatest challenge of my life, dealing with chronic pain

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Daniel: Car Accident

danielBefore my accident, about six years ago, I worked at a prestige car dealership in Brisbane. This work was physically demanding as well as being quite social. We all had to get on well as it could be quite a pressured environment and humour often kept us going.

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Margaret: Hurt Shopping

margaretThat Friday in June 1990 began like any other Friday – two adults, three teenagers, family pets, all heading out. I was totally unaware that this was the day "Super Mum" would die and life as I knew it would be over.

 

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Peter: Accident at work

PeterPanandfamilyIt happened on 28 August 2008 at 8.28am. Everything after that is a bit of a blur, but the moment the accident happened will be stuck in my memory forever.

 

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Elisabeth: Herniated disc

ElisabethNonnenmacher

For the past four years I've been struggling to cope with a herniated disc condition,

which has not improved much, despite me taking positive action and trying to manage it. The condition gives me severe back pain, which I feel almost every day and every night.

 

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Katia: Sport injury

katiaI was nine years old when I damaged the ligaments in my left leg in a hurdling accident.After a year of treatment my leg hadn't healed – in fact the pain had worsened and I was diagnosed with chronic regional pain syndrome.

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Jill: Breast cancer pain

jillBreast cancer is a diagnosis heard all too often these days at 13,000 diagnoses a year in Australia.

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Jacqueline: Hip Pain

Jacqueline Emmett

One day in Year 8 I was playing with some classmates when I hurt my hip. Stuck on the ground and unable to get up, I was taken to hospital by ambulance, but doctors couldn't find anything wrong with me.

 

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Symantha: Chronic migraines

samAs a chronic migraine sufferer I've lived with pain since I was a small child. With the help of sub-occipital electrodes and an implanted pulse generator (IPG implant) I can now manage my daily pain and rely less on heavy medications.

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Maria: Stress-induced migraine

MariaThornton

I've suffered migraine for about 12 years. Originally I would have a migraine

almost every day, so now I consider myself lucky to get just two a week.

 

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Deb: Reaching under a bed

debI woke up one morning in 1988 with a sore back.As the pain continued to increase, I consulted my general practitioner who referred me to an orthopedic surgeon. After some tests, I was told that there were no problems and that the pain should go away. It didn't.

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Renée: Car accident

reneeIn 1962 at the age of 21, Renée was involved in a serious car accident that kept her in an English hospital - in a 40-bed geriatric ward - for nearly two years.

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Eliza*: The right diagnosis changed my life

neural image web

Prior to becoming a chronic pain sufferer, that is, someone who experiences daily pain for three months or more, I had led a busy life. Post pain, it has been devastating to have to adjust to a vastly different life.

 

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Aileen: Hurt lifting files

aileenMy injury happened over two days – August 30-31, 2001 – when I was asked to reorganise the office's new filing system.

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Elizabeth: Managing pain

elizabethI was an advisory teacher when I suffered a spinal injury in 2007 that landed me in a Brisbane hospital emergency department.Thanks to a neurosurgeon, I regained the use of my left leg and the crushing pain eased.
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Marie: Cycling accidents

marieI had two major cycling accidents in the 1980s which caused a spinal fracture and severe whiplash.I quickly got over the accidents and was fine until the early 1990s when I started to have migraines. This gradually progressed to daily migraines by 1996.

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Olivia: Endometriosis

OliviaHamilton

I've suffered bad period pain since I was 15, but it wasn't until my late 20s when

I was diagnosed with endometriosis.

 

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Juliet: Inherited pain condition

neural image web

My pain symptoms started when my menstrual cycle began, at the age of 12. I had blinding pain in my pelvic region, sweating and nausea associated with menstruation. As I got older I also experienced intense back pain, and I would often blackout.

 

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Kelli: Autoimmune Disease

neural image webWhen I was 25, I was living life to the full. Then, literally overnight, I became ill. It was 15 April 1998, a date I will never forget, when I woke up in severe pain.  I had to crawl on my elbows and knees to go to the bathroom. I had pain in all my joints – it even hurt to breathe.

 

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Mandy:

Injury caused by phone

mandyMy problems started in the early 1980s with the introduction of computers in most public service departments.In 1986,

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Gabrielle*: Chronic migraine

neural image web

I suffer from chronic severe migraine. It started 20 years ago and became a daily

occurrence in 1996, from the time I had two cycling accidents.

 

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Trevor: Injured lifting a child

trevorI injured my neck in 1993 while attending a Scout Jamboree in Canada as a carer for a child with cerebral palsy.My pain symptoms didn't really show up until 1997 when I started getting lots of neck and arm pain.
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Peter: Struck by lightning

peterMy first taste of pain and injury was when I was only three years old.We had a car accident and I had my lower lumbar joints damaged as well as whiplash injuries to my neck. No one knew this at the time, though, and by the time I was nine I was having X-rays on my back to find out why I was in so much pain.

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Gerard:

Sneeze led to neck pain

gerard"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.

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Danielle: Childhood pain

danielleIt was during a long jump attempt at my school's athletics try-outs when I was nine that I first hurt myself.As usual, I ran and jumped but as I hit the sand I felt pain in what I thought was my ankle.

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Charmian: Pacing

My pain journey began in 198Charmian6 when I was 17. Unrelated to any incident, I began to experience extreme back pain. I later discovered it was a degenerative disease with no cure, but at the time I thought it could just be 'fixed'.

 

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Harry: Pain in Children

Harry PerkinsHarry Perkins, son of Olympic champion swimmer and Painaustralia Director Kieren Perkins OAM, was diagnosed with chronic migraine at the tender age of eleven.

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Janet: Crushed by a tree

janetSeptember 23, 2006 was a beautiful, still, sunny autumn day.I was in the UK to visit my elderly mother and other family members and had taken the train to London to visit a friend.

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Wanda: Back injury at work

wandaI first incurred a serious back injury at work in 1985. It was not able to be evidence-based for five years (at the time of surgery).

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Gerard:

Sneeze led to neck pain

gerard"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.

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