PAIN INFO

A collection of stories from our members.

Read more: Reader Stories

My name is Denada Xhafa, I'm 32 years old, from Tirana (Albania). 

Although I have been suffering from fibromyalgia for a decade, more than six years ago my health deteriorated so much I had to leave my job. Then the consequences started: the quality of my life started decreasing and so did my social life.…

Read more: Letter from Albania

Mary-Lynne, a well-spoken 60-year-old Nun from Burwood in Sydney, has lived with chronic, often-debilitating pain for more than 35 years, since being diagnosed with arthritis in her mid-20s. Due to the impact of the condition on her joints, soft tissue and bones, Mary-Lynne has endured more than 20 different surgeries over this time, including total hip and knee replacements, major back surgeries and many other procedures, including operations to repair tendons that had snapped off bone.…

Read more: Mary-Lynne - 35 years of pain

In 2007, Kat Wright was in her mid-20s and working a Fly-In-Fly-Out administration role on a remote mine site in the Pilbara region of Western Australia, when she began to experience frequent and intense pain in her right side, concentrated mostly in her neck, shoulder and elbow. Thinking that the sedentary nature of her job may be a factor – she was working 14 days straight doing 12 hour shifts – Kat began incorporating stretching exercises and seeing a physiotherapist on-site, however these strategies did not seem to improve her situation.…

Read more: Katrina - Fibromyalgia

Abbey was diagnosed with Juvenile Idiopathic Arthritis when she was just 22 months old. She has lived with chronic, daily pain for the last 12 years, which can range in intensity each day. Some days the pain is so severe that just getting out of bed and trying to walk can be unbearable. Abbey’s pain is primarily in the joints of her ankles, toes, knees, hips, fingers and wrists. Some days she also experiences pain in her jaw.

The activities Abbey is able to participate in can vary day-to-day; some days she can be quite active, playing sport or walking long distances, however other days she can’t do anything.…

Read more: Abbey - Juvenile Idiopathic Arthritis (JIA)

Lyn has lived with Occipital Neuralgia for nine years, after a seemingly run-of-the-mill car accident in 2009 that left her with what doctors thought at the time to be mild whiplash. She spent six years in agonising pain, experiencing chronic and debilitating cluster headaches, before she was finally diagnosed with Occipital Neuralgia (nerve damage pain) in 2015, which has since been proven to be caused by whiplash or trauma to the head or neck.

Prior to her diagnosis, Lyn was at times taking so many different medications that she was experiencing severe incontinence, as well as other serious side effects. The intense, chronic pain left her feeling suicidal and completely hopeless. Lyn experiences pain 24/7 and likens it to getting electric shocks every five to 10 minutes, from the neck up to the head and behind her eyes.…

Read more: Lyn - Occipital neuraligia

Sean, a well-spoken 42-year-old man from Tasmania, first began experiencing chronic pain when he experienced a bulging disc in his spine six years ago, which he describes as “basically exploding” in his back, causing severe nerve damage. After surgery to remove the damaged disc, he developed severe, chronic back pain and sciatic pain down both legs, which greatly impacted his life. Sean visited several different pain specialists in Hobart and tried a variety of treatments, but could not find anyone or anything that helped his situation…

Read more: Sean - Spinal stimulator

Jing-Yun - a disciplined athlete

I think I cry more than most people. Strange coming from someone who used to pride herself in not letting anything bring her to tears, especially physical pain. Up until a few years ago, I thought I knew what pushing through pain meant. I thought I was strong enough to handle any sorts of pain. Why? Because my whole life has been surrounded by what comes with the strict discipline and obedience of being an athlete and performer where even the slightest sign of discomfort and struggle must be masked by confident and graceful movements.…

Read more: Jing-Yun - a disciplined athlete

I was a very healthy person: eating the right food, going to the gym, a non smoker etc. I have been suffering with IBS for more than 10 years. In 2014 I became very sick and the GP diagnosed me with lung infection. After being hospitalised the physician did a scope and diagnosed me with GERD. My esophagus was so burned from reflux. My symptoms were coughing I -  did not even have heartburn. …

Read more: Susan - IBS and Fibro

Kailey lives with chronic pain due to Juvenile Rheumatoid Arthritis (JRA). At age 14 Kailey suffered an injury involving a Segway which resulted in two bulging discs, and ultimately led to a diagnosis of JRA. Now 16, Kailey lives with constant, daily pain that can range from mild (“a dull throb”) to extreme, debilitating pain that can leave her bedridden. Often she is unable to sleep due to the pain in her back, and she takes daily medication for pain relief, and other medication to suppress the arthritis.…

Read more: Kailey - Juvenile Rheumatoid Arthritis

I recently turned 25 years old. I am a young woman who has lived with major chronic disabling pain for the past decade. I have had 2 major spinal surgeries (3rd one pending) and more hospital stays, surgeries and needles than I can count. I experience sciatica, numbness and tingling in my right leg due to a disc prolapse I had at a young age – with an unknown cause. Doctors dismissed my initial pain as ‘growing/period pains’ when I was complaining as a 12 year old and only helped when I pushed and advocated for myself. …

Read more: Akii - pain in adolescence

Brett, a well-spoken and passionate young man in his early 40s, has lived with chronic pain for around 20 years. A gifted athlete as a child, Brett played a variety of high impact sports, which, unfortunately, combined with a genetic propensity for spinal disc weakness, led to him experiencing his first episode of severe back pain at the age of just 13.

He was able to manage his back pain throughout his teens and did not think too much of it, continuing his love of sports and even going on to study to become a Personal Trainer and Massage Therapist. However, at the age of 24, just before Brett was about to the join the Army, he played a game of social tennis with a friend, and was bedridden for two weeks. This was the first time he realised his condition was actually very serious.…

Read more: Brett - surgeries & spinal discs

I experience pain in different ways and as a result of several different conditions. I am sensitive to pain killers and anaesthetic so pain is also often part of my life when dealing with infections or minor procedures such as dental work where other people could medicate it. My relationship with chronic pain started at 13 with menstruation - I now know I was dealing with endometriosis and adenomyosis, and profoundly deepened at 19 when I developed fibromyalgia. …

Read more: Sarah - endometriosis

Pauline - CRPS

Pauline, a 36-year-old woman from Mackay in North Queensland, was diagnosed with Complex Regional Pain Syndrome (CRPS) in 2010, after an injury to her knee. She experiences intense chronic pain that she describes as feeling like there is acid in her veins – the pain switches between feeling like a burning hot sensation to that of an ‘ice burn’. Touching the area increases the pain, and often even wearing clothes produces unbearable pain. If someone touches her on the area she says it feels like they have razor-blades on their fingers.

 …

Read more: Pauline - CRPS

Jaime first started experiencing pain in her back and legs as a young teenager, and had her first surgery – a laminectomy – when she was just 14 years old. This surgery was successful and meant that Jaime could live a normal life for around 10 years, when the same pain in her legs started to return. She then had another laminectomy, which held the pain at bay for another five years.

In 2008, when Jaime was newly married, living in the United States and working as a General Manager at a hotel, the familiar pain in her legs returned. …

Read more: Jaime - surgery in teens

Tina - PHN

Over the past five years, I have busily blended growing a new family with a career. Life as a working Mum was moving so fast I was blind to the affect it was having on my body. All of a sudden, I found myself completely unprepared for what the universe had in store for me next. Shingles. The brutal and agonising pain of shingles right in the middle of my back. At the time I had no idea what was wrong with me let alone that this condition was here to stay indefinitely in the form of Post Herpetic Neuralgia. …

Read more: Tina - PHN

Trinny has lived with chronic pain from migraines for around two and a half years, and experiences constant pressure behind her eye, and pain down the side of her neck. While she had experienced migraines on and off before, her doctors still have no explanation for why she one day developed a migraine that never really went away.

Trinny’s sleep is badly impacted, leaving her exhausted and grumpy, as well as in pain.…

Read more: Trinny - migraines

Six years ago, Natasha was on a backpacking holiday when she suffered intense neck, back and head pain. It took three years of seeing multiple therapists to get a diagnosis (including Neurologists, Chronic Pain Clinics, musculoskeletal specialists, acupuncture, Bowen therapy, physio, hydrotherapy, kinesiology, E.N.T., psychologist, psychiatrist, pain specialists, Neurosurgeon, chiropractor, naturopathy, dietitian, and more), until she was eventually diagnosed with Occipital Neuralgia.…

Read more: Natasha - Occipital neuralgia

Chris has lived with chronic pain for around 10 years, after he slipped and fell on his forehead at his own 42nd birthday party. While he heard an alarmingly loud crunching noise when he fell, at the time he got up and walked away, surprisingly feeling fine. Sometime later he discovered that he’d actually cracked a vertebra and ruptured several discs; scans showed he was only 4mm from becoming a quadriplegic.

Six months after the accident he woke to find that both arms were numb, and his back was in agonising pain. Then followed months of tests and scans, until he eventually saw a Neurosurgeon who performed an anterior foraminotomy and discectomy. However, unfortunately there was still no improvement and Chris continued living in constant pain.…

Read more: Chris - a fall at a party

I may look good but I don't (always) feel good!

I have a number of chronic pain conditions but none of them are visible so even if the pain is extreme no-one knows unless I say something. I think this is the hardest part of pain.

As my pain can't be seen even family and friends forget that I am struggling and expect me to be the same person. There is not the understanding or allowance made for why I might be cranky or teary even though I have tried to explain how I feel and what is happening.…

Read more: I look good but...

My story starts on the 6th of July 2008, just over 7 years ago. I went to a house where my daughter was staying and upon leaving I missed the stairs in the dark. I inverted my right ankle and heard a loud crack. I attempted to stay upright and stepped on my left foot and then back onto my right foot at which time I realised I was in extreme pain and that my ankle lacked any support at all. I allowed myself to fall the last two steps and lay face down in the driveway until an ambulance arrived. I was taken to Wollongong hospital, x-rayed, told it was a sprain, that I should walk on it, and sent home without pain killers despite being unable to walk from the hospital even with crutches. They wheeled me to my husband's car in a wheelchair.…

Read more: Tanya - pain after fall

Dennis speaks of his love and journey with Ann, his wife who lives with chronic pain ...

I would like to tell you about the most important person in my life, my wife.

I am over 6 foot and the biggest surprise in my life at the birth of our first born our son, to watch my tiny wife give birth to our 9 lb son was amazing, to watch her go through that and only seconds later laying there with our son laying on her chest, the look of contentment on her face was amazing, and 18 months’ latter to watch again as she gave birth to our daughter who weighed in at 9lb 9 ozs was just as amazing.…

Read more: Dennis - A husband's perspective

Susanne - multiple diagnoses of pain

My story is simple and one of four parts.

Osteoarthritis diagnosed in 2009. The osteoarthritis was diagnosed after age and a series of falls happened while I was living and working in England. Although saying this my knees had been damaged since I was a teenager. Migraines which developed as a teenager and stayed away for many years and then returned with a vengeance in my 30's. The migraines can cripple me at times but I try to manage them as best as possible but combined with many other things life can be interesting at times.…

Read more: Susanne - multiple diagnoses of pain

I have Fibromyalgia, an invisible and complex chronic pain syndrome. It has had me bedridden 4 out of the last 6 years and been the bane of my life for much, much longer. The pain management team at Randwick POW and in particular Dr Bhar has helped me "re-discover" some sense of a normal life. I was living and working in California when the Fibromyalgia slammed me down. Bedridden for months I finally made my way back home to Sydney, just in time for my husbands back surgery. My 25 year career which spanned Asia Pacific in Information Systems, Technology and Product Management was over. My business is now being a energy envelope manager, full time carer for my family and trying to reinvent my professional career via a mobile apps.…

Read more: Susan - Fibromyalgia

Megan - dealing with pain

For the past 2 years I've been living with chronic pain, brain fog and fatigue. Although fatigue doesn't really begin to describe it; it’s more like having an elephant sitting on you making it hard to move your body and having your brain be complete mush.

To begin with I didn't have any idea of how to deal with it; I spent my days collapsed on the couch unable to do anything. After searching for the right GP and doing tonnes of research I almost have a complete support team including my family, my GP, an acupuncturist; exercise physio,and a team of pelvic pain specialists. With the support of this team I have begun to slowly learn how to manage my symptoms so that I can live a life that is simple, sustainable and meaningful.…

Read more: Megan - dealing with pain

I grew up in country Victoria on my parents’ dairy farm, a very full on sporty kid into football, water skiing, running and of course motor bikes. I was mad keen on racing and riding with my friends. At the age of 16 we moved to another farm in Southern NSW and here I stepped up my racing. I also started a diesel mechanic apprenticeship in 1994 when I was 17. After racing for a few years in 1998 I decided motor bikes were too dangerous and took up water ski racing. As I had water skied all my life I was a natural and did very well in my first few years of racing.…

Read more: Matty - now off opioids!

Leonie - Life after pain

I experienced significant psychological and physical trauma at the tender age of 18 months at the hands of a trusted family member. At age 4, I fell from a balcony onto a cement slab and broke my sacro-ilium which is still un-mended now at age 42. Numerous other events, physical and psychological occurred throughout my life time, which contributed to a personal belief that I was useless, hopeless, life was too hard and ultimately I became chronically depressed and suicidal. I firmly believed for years that I was just a hypochondriac and my mother, bless her, simply couldn't understand how I could possibly have ANOTHER headache!…

Read more: Leonie - Life after pain

Laura - Thoracic Outlet Syndrome

I am interested in sharing my pain story with others to raise awareness about the fact that chronic pain is something that can happen to anyone, including young and educated people. It is not necessarily a disease of the poor or the mentally ill. Pain does not discriminate and a person in pain does not look like anything in particular.

Three and a half years ago, at the beginning of my career, I started to experience strange pain in my right hand. About a year later, this pain spread suddenly to my entire arm, then to my other arm, and never went away.…

Read more: Laura - Thoracic Outlet Syndrome

Kathie - professional dancer

I’ve lived in constant pain since 1996. My accident happened during a performance in NZ (I was dancing the Can Can!) and as professional dancers do, I continued my performance even after I had injured myself – adrenalin is a wonderful thing! I spent the first six months struggling to walk, couldn’t drive and definitely couldn’t dance which, as this was my life, was pretty traumatic. I worked with some amazing doctors…

Read more: Kathie - professional dancer

Karen - pain is complex

I have been an active, energetic, “together”, happy and organised person most of my 55 years. The health problems I have had in past years have not affected my life too much. Lower back, leg, ankle and knee pain were manageable with sensible behaviour, using a Swiss Ball as a chair at work, bandaging when necessary and exercise. I have psoriasis and allergies and used to have asthma, hay fever, high blood pressure and high cholesterol.…

Read more: Karen - pain is complex

I'm 30yrs old and a mother of a 4year old boy. I have endometriosis, pcos and adenomyosis and live daily with my chronic pain condition.

I would say I have had endo and pcos since puberty. I had severe period pains during high school, it would flood out onto my school dress every month and I would sneak to the toilets to wash my dress. I would have many over the counter pain killers daily and I thought this was all normal.…

Read more: Jenna - endometriosis

Hi my name is holly I'm 28 now and ever since I can remember pain has been something as integral to who I am as my name or date of birth. I remember thinking I was different as a little girl because all the other little girls had beautiful long hair and even at the age of 6 I still had but a tuft of baby style fluff. I remember wondering if it hurt to eat and go to the toilet for everyone else, but I never complained and I thought blood in the toilet was "normal".…

Read more: Holly - coeliac disease

Dave - pancreatitis

My story starts 25 years ago, with a trip to the hospital and a stay. My diagnosis was Acute Pancreatitis, a disease with one of its main symptoms and result of an acute attack is really severe pain. I would experience these attacks about once every 2 years until about 8 years ago. 8 years ago I started to get the horrible pain in my abdomen again, and although not as severe as during an acute pancreatitis attack, it was starting to effect my every day life.…

Read more: Dave - pancreatitis

Helen - ulcerative colitis

Where to start, where to end, What to reveal and what to hide?

My name is Helen and my pain story is one that is tangled up with the disease Ulcerative Colitis, some autonomic nervous system dysfunction and some very intense life events.

I was 21 when I was first diagnosed with Ulcerative Colitis, it was painful, bloody and messy to say the least. I am now 43 and trying to find my way back to a life that does not leave me in hospital every few months.…

Read more: Helen - ulcerative colitis

In days gone by women like me would most likely have been locked away in a psychiatric facility being told " Your pain is in your head!". We can't find anything wrong with you.

Fortunately a few health care professionals took the time to listen and support me in my quest to find answers to my chronic retractable pelvic pain sustained after pelvic surgery in 2004.

This pain is not just any pain as we know it. I couldn't believe such horrendous pain could exist.…

Read more: Catherine - Pudendal pain

Anne - CRPS

Anne, a well-spoken woman in her early 60s from Lake Macquarie, has Complex Regional Pain Syndrome, resulting from knee replacement surgery in 2010.

Anne was originally scheduled to have six weeks off work after her knee replacement surgery, which was extended to nine months, but eventually she realised she would have to retire – six years earlier then she had planned. Anne’s experience of pain means she is unable to participate in many of the normal activities of everyday life such as going to the gym or even for a walk, and sometimes her pain is so severe that she can’t bear to have anything touching her leg, including shoes and clothes.…

Read more: Anne - CRPS

Nicola - Broken neck

Everyone experiences pain. From the minor headaches, broken bones, moving up the scale to post operative, child birth and severe burns. But imagine pain that never goes away.

Chronic.  Constant.  Never ending.

After breaking my neck nearly three years ago I now have neuropathy, nerve damage that radiates pain from my neck into my arms and hands.…

Read more: Nicola - Broken neck

I have lived with chronic pain for nearly 10 years. I have gone through tough times - needing high medications and attending pain clinics. I suffer with chronic back pain and neuropathic pain also depression and anxiety. I have lost lots but gained knowledge as well. I try and keep going every day.

I had a workplace accident in 2006 - a low back pain injury.…

Read more: Ruth - workplace accident

Jo - standing up to the bullies

I saw a story about bullying - about how teenagers are so depressed and I thought how awful it was and how hard it is to change society’s mind. Where do you start when in life even as adults we are bullied by society and how I was so sick of being bullied by a system.

Having the strength to stand up to the bullies?…

Read more: Jo - standing up to the bullies

Amy - Rheurmatoid Arthritis

My story of chronic pain began when I was 20 years old. A new full time job was very demanding on my body and I was studying at University. As the year progressed, I realised the pain made it hard for me to walk. I wanted the strongest painkillers to numb the pain, yet the pain did not subside. Physiotherapy, hot and cold packs didn’t work either. I knew there was something wrong. It was then I was diagnosed with Rheumatoid Arthritis (RA).…

Read more: Amy - Rheurmatoid Arthritis

Jenn - fall down stairs

I fell down some marble stairs in my apartment in Caracas, Venezuela in 1977. My husband and I were living there for a year or so teaching English. I remember the pain vividly however I managed to eventually stand up and move. Over the period of a few days I seemed to recover quite well however I did have a heavy feeling in my lower back and legs. I ignored it as I was only 23 and didn’t want a silly thing like a fall stop me from enjoying my life.…

Read more: Jenn - fall down stairs

I have lived with pain in my lower back and hip for years after an injury. I hurt myself cleaning a spa bath and had five months off work. The pain never went away but I went back to work anyway. For several years I went back and forth to doctors and complained about the pain. It seemed like i was soon labelled as a hypochondriac.

Well i took pain killers and kept on working and would come home from my cleaning job and just crawl into bed. The pain in my hip would have travelled down my leg and across my foot making walking hell. Making it worse was the extra weight i was carrying.…

Read more: Debra - healthy lifestyle for me

Ann - Fibro strategies

I was diagnosed with fibromyalgia about 13 years ago, but I believe I have had it for nearly twenty years. Back then GP’s did not know or understand what fibromyalgia was and I did the rounds of GP’s, specialists, physios, chiros and massage therapists who constantly mentioned how tight my muscles were, but told me there was nothing wrong. I wasn’t really in pain… but of course I was.

I was finally diagnosed when a physio gave me a copy of a page out of a book about fibromyalgia.…

Read more: Ann - Fibro strategies

Sophie - neuropathic pain

I was first diagnosed with chronic neuropathic pain and a permanent injury early 2009. The pain is from a car accident that happened in January 2007. The main area of pain was in my right hip, from the seatbelt. From the get go, the doctors thought I may have fractured my pelvis. After a bone scan that came back clear of any fractures, I was still in pain, and kept presenting to my GP with pain in my right hip.…

Read more: Sophie - neuropathic pain

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