Angela

I live with chronic post-surgical pain as a result of significant facial nerve damage after maxillary and ongoing oral surgery.

Although I was aware of the risks, I hadn’t prepared myself for the pain and subsequent impact on my life.

Life has been a challenge at times, not being the person I once was. The ongoing, constant pain has had unfortunate consequences, emotional and physical.

My diet is severely restricted and anything but normal (it is essentially soft foods and liquids). This has made me somewhat antisocial and reclusive because so many social engagements involve sharing and enjoying food, which is something I cannot do.

It has become increasingly apparent to me that most people don’t really understand what being in constant pain is like because it is not as visible as, for example, having a broken arm or leg.

The pain is an unrelenting, constant dull ache; there is no reprieve. Then, just to make life interesting, it develops a different personality and becomes more intense. It is unpredictable and it can be so, so depressing.

To manage my pain, I take Endone, together with a cocktail of other medications for other conditions. Although the Endone is effective, it does have its side effects, but at least it allows me to function and continue to work. I’m very conscious of its addictive properties, so I am very disciplined with the dosage.

With work, I find that matters just take longer. I need more time to think and am not as reactive as I used to be; but it is a saviour. I might still have pain but at least I’m intellectually and socially engaged. This is good for my mental health.

Coping with chronic pain has now become part of life and I just ‘get on with it’. What’s the alternative?

I have to admit there have been many dark days when I get depressed and have to overcome scary thoughts. As hard as it is at times, I try and focus on the positives in my life and convince myself that living is the best option.


ANGIE

I lived with ongoing pain for three years until I reached a point where it was either going to take me down, or I had to make a change.

It started in my early 20s with shingles, which was untreated and then developed into a nerve pain condition called Post Herpetic Neuralgia, or PHN, a painful condition associated initially with nerve damage.

It was an all-consuming pain, which felt like someone had placed my neck and shoulder in a vice and proceeded to tighten it.

I tried every type of therapy and had numerous tests. I never had a conversation about persistent pain and was never given any education about how to manage it. The PHN wasn’t even diagnosed until later.

Pain is a silent affliction and I largely battled it on my own. I experienced misunderstanding and disbelief from others, including my then partner.

I got more and more tired of fighting through the pain, and without the tools or understanding to know how to change things, I decided to pack my bags for a five-month job at a hiker’s cottage in a remote part of New Zealand.

The outcome was pretty spectacular and almost immediate – the pain went away. This was a big revelation for me and set me on a different path.

I decided to give up my career in event management and get involved in the health sector. I started with massage therapy and then did a medical science degree majoring in neuroscience. Pain now fascinates me.

With my new knowledge, I understand that at the time I had an accumulation of perceived dangers in my life; and like a warning system, it had expressed itself as ongoing pain. When I changed everything about my life, the danger disappeared, and so did the pain.

The pain comes back from time to time when I’m sick or fatigued or under stress, but now I acknowledge it as a warning that I need to make changes. I used to catastrophise and worry that the pain had returned permanently, but it doesn’t bother me that much these days.

I just look for what needs to be fixed in my life, and the calm restores me.


ANNA

I was 24 when I developed recurrent acute pancreatitis. Around the same time I was also diagnosed with polyarticular spondylising arthritis.

The conditions arose out of nowhere and the pain has had a big impact on my life. Inflammation of my pancreas results in severe abdominal pain.

The arthritic pain is all over my body. I’ve been in and out of hospital every month or so for the past 18 months. Most upsetting is the effect on my hands.

I play the piano and ukulele and I’ve been learning the guitar and violin. But I can’t even consider playing unless my pain is under control.

The pain and hospital stays have also made certain aspects of study difficult, but I haven’t given up and I look forward to completing my studies.

Some of my friends have been supportive but others don’t understand. They do very physically intense activities like rock climbing and bushwalking. I can’t do those things but usually a compromise can be found.
I’ve had periods of depression and I have anxiety not knowing what is making me sick or what the future will hold. I worry about whether I’ll ever get the pain under control and how it will affect the rest of my life.

My GP manages my treatments and has been one of my biggest supporters. When the pain specialist told him he thought the pain was all in my head, he didn’t listen. I’m grateful for that.

I’m currently on a cocktail of medications, including opioids. They are effective for me but only up to a point and need a lot of tweaking.

I also use non-medicine approaches. I do simple non-strenuous exercise, meditation and relaxation every day and I maintain a healthy diet.

It can be hard, but I try to embrace the challenge and find creative solutions to my problems. All in all, I feel lucky that things aren’t worse and that I have so much support from friends and family.

In the future I’d like to sacrifice less of my life to the pain. I’m looking forward to working in the health industry and I know I’ll understand when patients tell me they have pain.


BEN

I’ve had several major injuries, but it took decades to learn how to manage pain and go through it to the other side.

At 14 I was struck in the back with heavy machinery on a farm, which temporarily paralysed me. I made a full recovery until becoming a competitive show jumper, when the weakness in my back caused pain into the night and sometimes the next day.

At the age of 21 while competing in a show jumping event my horse fell on top of me, which damaged my ribs, spine, pelvis and coccyx. The top and bottom of my pelvis had to be pulled back into place, ending up on a slight angle.

I had grown up believing you just ignore pain and tough it out. So that’s what I did.

Then in my 30s I was re-educating a horse when it lashed out at its owner, breaking my hip in the process. I couldn’t use my left leg for two months. I didn’t want a hip replacement so I decided to look for alternatives.

A sports doctor found that one of the nerves in my back had become trapped, and with some work it was released. For the first time in my adult life, I wasn’t in pain every day.

I did physiotherapy and worked on my core strength and fitness, and began doing weights, which helped my body become more symmetrical.

Next came a paragliding accident. Spending four months in hospital, for me it was a turning point. The accident did so much damage, doctors were able to straighten my pelvis. And with my knowledge about rehabilitation, I was now in a better position to recover.

Rehabilitation was exhausting. The first time I did a yoga class I slept for five hours afterwards. But I knew it was the right thing to push through the pain.

Strengthening my body allowed me to get back to work, and back into life. I’ve done so much rehabilitation, I’ve even had some pins and rods removed from my spine.

I keep improving my body because I want to get as much mobility and strength back as possible. If I don’t, my body will seize up and the pain will be worse. Keeping myself fit and healthy means not letting pain limit my life.


DONALD

I have osteoarthritis, scoliosis, and compacted lumbar vertebrate as well as osteoarthritic spurs – plus heart problems etc!

Youthful stupidities such as jumping out of trees, and war time experiences that at one point saw me blown out of the water, led to some of these problems.

Despite this, I’ve been active most of my life, including volunteer bush and cave rescue and fire fighting. Eventually I couldn’t work anymore. Aged 60 I found myself on the Disability Support Pension and increasing drug regime.

This really impacted my mental health. I gradually increased my pain medication and, after knee replacement, I was given opioids and continued taking them long after recovering from surgery.

I might have still been on the medication treadmill had I not discovered the St Vincent’s Hospital pain clinic telehealth service.

I asked my GP in Bega to make the first appointment and had all my appointments in a private room at my GP’s surgery, using their computer. I was able to have my first consultation in six weeks, which was much faster than waiting 12 months for the public pain clinic in Canberra.

At the time I had been booked to see a spinal surgeon for possible spinal fusion. I had been concerned about becoming a paraplegic. But after the first session with the team from St Vincent’s Hospital, I cancelled the appointment.

For a period of six months I had monthly appointments with the Sydney-based Pain Specialist, psychologist and physiotherapist, together or separately. The psychologist helped pull me out of suicidal tendencies, my local physiotherapist supported me, and I reported back to my GP about my progress.

That year I ended up doing a crash course on everything to do with pain. I learnt a lot about brain plasticity and how thought patterns can influence the pain you feel. Pain Support ACT was an invaluable source of information.

I’ve cut down on medication, and now only take Panadol Osteo. I’m grateful to have a better understanding of my body, pain, and how to manage it. I’ve regained quality of life.


ELLYN

I’m a young woman who has lived with pain for as long as I can remember. I’ve learnt that mindset is everything.

I experience a range of symptoms that fit within the neuromuscular condition ‘fibromyalgia’, which is characterised by regular widespread pain, fatigue, sleep disturbances and occasional cognitive fog.

Fibromyalgia gives me ongoing and unpredictable musculoskeletal symptoms, which created challenges growing up. A simple hug on occasions caused nerve pain and rib displacement requiring physiotherapy rehabilitation. The unknown of whether movements were helping or hindering my body caused regular anxiety.

I constantly sought control and assurance that I was doing the right things to stay healthy and functional. This propelled my interest in the human body and led me to undergo a Medical Science degree and Masters in Dietetics.

I began contact martial arts in 2013 to increase fitness to in an attempt to re-train my brain to the responses of pain. I feel like my body gave me a ‘break’ for about a year.

Towards the end of 2014 I started experiencing unusual nausea and pelvic pain, which was worst when I was menstruating. Almost a year later this was diagnosed as endometriosis and required minor surgery. I am now on the Microgynon pill and Implanon to manage further endometrial growth. Although the medications have minor side effects, they are necessary to manage my symptoms and are just one part of my pain management.

In the past 10 years I’ve become more attuned to my body and realised my perspective is key. My pain gets worse if I’m anxious so mindful breathing has become a valuable practice in my day.

I’ve also learnt to cut myself slack if a flare up occurs. In these times I give myself a pep talk to get moving and practice basic mobility movements, knowing this will assist my functionality long-term.

I cherish the support and understanding of those around me and the ability to be open about my capabilities day-to-day. Despite the pain, I’ve chosen to live a full life. I’m proud of myself.


GARY

My story is about learning the value of daily management of my condition, which has resolved the pain and stopped it from returning.

In 1972 at the age of 24 I had a cerebral haemorrhage, resulting in permanent paralysis on my left side. I have limited movement in my left shoulder, can’t use my left arm or hand, and can’t move anything below my left knee.

Over time this caused musculoskeletal problems and at times pain, both muscular and nerve pain. My body is out of sync.

The first time I had a severe pain episode in my lower back was after retiring from work in 2003, when I became less active. The pain felt like an 8 out of 10. I saw a physiotherapist, did the exercises they recommended, and the pain went away. I then stopped the exercises.

The pain episodes happened again and again, with me taking the same course of action after seeing either a physiotherapist or chiropractor. Some instances required painkillers, but most did not.

Then in September 2014 after a long visit to Floriade, I fell asleep in a lounge chair and awoke with a sore lower back. I could move just enough to get into bed. When I awoke the next day, I could hardly move. The pain seemed like a 10 out of 10. I also had sciatic pain.

I was bedridden for three months and couldn’t sit more than 15 minutes before the pain kicked in.

My GP prescribed strong painkillers and the physiotherapist prescribed exercises. Although I didn’t like taking painkillers, my physiotherapist told me that by masking the pain I would eventually be able to do the exercises to help me move freely again.

Over time I was able to sit for an hour and walk for 30 minutes. I continued to do the exercises. By July 2015 I was able to drive and resume my life.

I now do my exercises morning and night. I maintain good posture, keep active and make sure I don’t sit for too long. For me it’s all about keeping my body flexible to keep the pain away. I’ve had twinges since, but thankfully no flare ups.


KIM

I’ve lived with pain since my early 20s and now my life revolves around appointments to help me manage it. I’ve recently had a breakthrough and feel I’m on the right path.

I have widespread pain in my body, mainly in my upper body and feet. It’s a very unpleasant feeling, burning and aching. It’s like a monster in my life. The pain has given me a lot of anxiety and has impacted my mental health.

 

Although I was employed for most of my adult life I always found work difficult. Around the time the pain first started, I remember having to sit on a stool to cook dinner because my feet were so sore. I persisted with different jobs for 15 years until the pain was just too unbearable and I couldn’t cope anymore.

In my last job, I left my shift early one day and never returned. I went straight to a medical centre and it was the first time that I heard the term ‘chronic pain’. I had always dismissed pain as part of my life. I was 34 years old.

For four years I tried to get help without finding the right fit. I had numerous tests that showed no particular problem.

Since getting support from the National Disability Insurance Scheme (NDIS), I’ve been able to get the care I needed.

I now have weekly sessions with a psychologist trained in chronic pain and an exercise physiologist. It has blown my mind. I’ve learned about how pain can impact the mind and how to manage it through my mind. I’ve learned to lift 25kg weights without even thinking of my pain, and I’m learning how to control my anxiety.

For most of my life pain has stopped me from living. I had to give up travelling, dancing, going out, meeting people, working, sport – everything I enjoyed. Now I’m finally feeling as though I can move beyond the pain and reconnect with life.

I told my psychologist I want to be independent and flourish in every area of my life, and managing my pain is an important part of making that happen.


ROBYN

My whole life people have told me the pain is all in my head. They say I don’t look sick. Others say I’m ‘faking it’. The reality is a different story.

For more than 20 years I’ve had Chronic Fatigue Syndrome/ME. For 15 years I’ve lived with fibromyalgia, which causes pain all over my body.

More recently this has been compounded with the onset of several forms of arthritis: psoriatic, osteoarthritis and rheumatoid. I also have plantar fasciitis in my right foot.

Every day I experience joint pain, muscle aches, tingling in fingers and toes, and sharp, shooting pain. I feel very lethargic, as though I have a bad flu without the head cold.

Living with pain has decreased my mobility and impacted my ability to work. For 18 years, I had a good paying job but when I had to take a lot of sick leave my employer wasn’t very understanding. I took a less demanding job but then had to leave work altogether for several years.

I find it difficult to sleep and my mental health has been affected. I have depression and anxiety and have been on antidepressants for many years. The last few years have been particularly difficult with the arthritis worsening.

However I’ve now realised I have to take control of my own health. I’ve learned to take each day as it comes and just deal with it. I don’t push myself too much anymore.

I take several medications for arthritis and do gentle exercises every day to strengthen my body. In the past I had some relief with alternative medicines and I would like to see a physiotherapist or chiropractor regularly, but I can’t afford these on a low income.

Community services have given me a house cleaner and I pay for someone to mow my lawn. I save my energy for the things I really enjoy, like my veggie garden.

My experiences have given me a lot of empathy for others and I’m gaining a lot of satisfaction from my new part-time work in disability.

I do believe ‘what doesn’t break you makes you stronger’.


SARAH

I was diagnosed with Complex Regional Pain Syndrome at the age of 12. I have now self-managed chronic pain for several years, but it is still part of my life.

My pain began years before my diagnosis. It started as unusual aching and sharpness in my ankles and legs.

The first significant flare up was when I was aged 10. I was unable to walk, and we began to see many specialists. I was admitted to Canberra Hospital, but tests proved inconclusive, and doctors began to say it was “in my head”.

My peers were unable to understand and would often make similar comments. It was very difficult to be so heavily criticised.

With the support of family and physiotherapists, I was able to attend hydrotherapy and regain control of my body.
The pain came back after an illness in Year 7. Without treatment my condition quickly worsened. Despite being confined to a wheelchair I was unable to gain admission to the pain clinics at Canberra Hospital or Westmead Hospital in Sydney.

Only when unbearable pain while traveling on a family holiday caused us to stop at Sydney Children’s Hospital in Randwick did my recovery truly begin.

They were able to assist my admission to the hospital’s paediatric pain clinic. It took many trips to Sydney but was worth the effort. I had many different specialists working on my recovery as a multidisciplinary team, consulting with me in the same room. Although I was only 12 they were able to explain what was happening in my body and define causes and treatments.

This knowledge provided me with a solution. I was treated with hydrotherapy, physiotherapy and Cognitive Behavioural Therapy, both during my visits to Sydney and back in Canberra.

These therapies and the discipline I learnt for daily exercise and mental strategies allowed me to become self-managed without medication, and have allowed me to live a full life.

I am now 19, an engineering student at ANU and working in the aquatics industry. I enjoy recreational sports and have recently become an advanced open water diver.

I feel empowered and now want to be an advocate for young people in pain.