The High Cost of Pain

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Your Stories

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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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Mandy:

Injury caused by phone

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


I used to run a recruitment section within the old Commonwealth Employment Service (CES) and I used to hold the phone under my chin (wearing headsets was not an option) so I could use my hands to type.

Unfortunately I was born with extra cervical ribs and fibrous bands, which is quite rare. Working like this compressed the ribs on my thoracic outlet on both sides, as when the right side was sore I swapped to the left.

It took a few months before I experienced swelling, pain, discolouration of the skin, vascular changes and various other symptoms. At the time, I had a good career working full-time and I was married with two children aged three and four.

Within three years my life completely changed. I lost my career, my pain became chronic and I was depressed and unable to work. I couldn't even bath my children, drive my car or perform menial household chores.

I became a victim within the medical world as one doctor after another told me "I don't know what's wrong with you", "I can't see anything" or "it must be in your head". It was only an astute rheumatologist who worked out what was wrong.

I had thoracic outlet compression and had developed chronic regional pain syndrome (CPRS) type 1 which is also known as reflex sympathetic dystrophy or RSD, affecting both my upper limbs, hands and cervical spine.

In October 1989, I was sent to a surgeon who performed bilateral sympathectomies to relieve my excessive sweating and trans-auxiliary rib resections of the extra rib, bands and first rib to try to alleviate the pain. These were large operations and it took a couple of months to recuperate. Unfortunately they did not help - in fact they have left a lifelong legacy of problems.

I started to experience very low blood pressure, as having my cervical ganglia removed completely from both sides of my upper body (cervical symathectomies) exacerbated my already low blood pressure. I used a wheelchair for a couple of years (I used to embarrass my kids when I would get out of the car, walk around and get the chair out then sit in it to go supermarket shopping).

It was at this time my marriage broke down and my children went to live with their father. That was probably the lowest part in my life. Then, through chance, I was referred to the Caulfield Pain Management Clinic.

Under their wonderful guidance and help, I was able to pick up the pieces and get on with life. I was placed on liquid methadone (my body was not making enough of its own pain relief) and other pain relievers, and given phentolomine infusions for pain blocks at intermittent intervals as well as therapy, intensive care and counselling.

Fast forward 15 years and I am still on methadone (though in tablet form now via a government prescription). I have remarried after meeting Paul, a six foot seven inch policeman, on a cruise to celebrate my divorce and 40th. I have had another daughter – Tea Lee, who is now 11 and the light of my life.

I work part-time, as my condition is still chronic but I now live with my pain.

I still suffer from low blood pressure but it is now only in very hot weather. My little girl has never visited, nor will she ever, visit the beach with her mum. You have to make adjustments and sacrifices all the way along with chronic pain and your children (or family) suffer the loss with you.

I have had my credibility doubted all my life - I actually won a court case this year due to discrimination under the disability act. I fight to hold my head up high and succeed the best way I can. Just because you don't look disabled doesn't mean you are not disabled.

I started doing art work at a local studio and found this a wonderful distraction for pain. I have won several shows and prizes for my art. I went back to university in 2000 and made sure I got high distinctions. Yes, I am have this disease, yes I have a disability but I try to achieve every day and teach my friends , family and children - my older two children are now 29 and 27 and I have two grandchildren - that anything is possible as long as you keep trying.

Matt my son is now 27 and a musician. He has been affected emotionally throughout this time but he is finding his way through life and pursuing his dream. I really hope this will happen for him. One of my proudest moments was seeing him perform on the stage at the Palais in St Kilda.

My eldest daughter, Brooke, has just been diagnosed with CPRS and fibromyalgia. Her injuries are different from mine but unfortunately her pain is the same. I now find it my challenge to help her fight.

Brooke is just starting out down the path of the medical profession minefield and is finding out just how inadequate treatment for chronic pain is. She has the experience of watching me and my struggles and I hope this helps her at least avoid some of the pitfalls.

It is amazing just how inadequate treatment is for chronic pain and that ordinary people like me and Brooke need the professional help and empathy sadly lacking in the medical profession. We desperately need funding, training and follow-up to improve chronic pain education.

It is a silent disease. I call it the "black cat" as I have been so unlucky to have had it cross my path. It affects many millions of ordinary people just like me. Sometimes life is not fair but I have learned that it is what you make it - and mine is getting better.

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