I am reading my last two weeks on your pages. This is unconscionable malpractice. I was literally sideswiped professionally when my GP broke his ankle and nobody would treat me. I had gone to a pain clinic in Gosford, and unbeknownst to me, this quack put a letter on my medical file that has all but made me, a compliant patient and a medic, thankyou, into a criminal from one day to the next. I have a long and illustrious history of degenerative OA. I didn't have time to deal with this sudden incapacitation. I have been given nonsense stories about how pain is misunderstood, etc. No it isn't. If it was misunderstood Hospice would abandon it. Fortunately the policy makers in Australia are not cruel enough to do this to the actively dying, but they are killing people with debilitating pain. I live from steroid injection to the next set three months later. This is a problem. The cavailer attitude everyone has with this new directive is irresponsible and I am actually going to take one practitioner to court. She literally falsified a diagnosis to support this idiocy. Where I come from that is punishable by fine and by jail time. I don't give a fig for what policy is in place. That is malpractice. This latest hell they are putting us through is cruel and irresponsible and I hope that NSW has a lot of money to support the lot of us who will not be able to work when they have finished with us. Personally I am not ready to be in a wheelchair. I am literally researching different countries to see if I can find one that won't make me live as a crippled person.

Hi this is my chronic pain story, if it helps even one person out there and to remind another person to keep going I’m going to share my story and how I am dealing with chronic pain since the age of 13, I am now in my early 20’s and it’s been a hell of a journey. I went to a sports high school growing up as that was the only school local. It first started with severe abdominal pain, period pain pains going right down to my legs, stiff joints and muscles to the point I couldn’t walk or move. I would get in so much pain I would collapse and have low blood pressure. It was scary every time I would stand my blood pressure would go extremely low causing me to faint. When I was in class I would dread the bell to ring for the next class as I knew I would pass out when I stood up and end up in hospital. My teachers thought it was somatic or just doing that for attention when in fact I was unwell. Even the gastroenterologist I saw in Sydney Children’s Randwick thought to was somatic or rumination syndrome. It wasn’t. At the age of 16-17 I was researching other gastroenterologists that could help me as I would go months without going to the bathroom - severe constipation and vomiting. I couldn’t eat everything I ate just came right back up. It wasn’t until I saw a gastroenterologist in a private hospital and he thought I had a functional GI condition colonic inertia (slow transit constipation) I ended up seeing a surgeon up in Sydney for help. We trialed a cecostomy tube which is a tube that helps irrigate the large bowel in hopes of gaining regular movements and building elasticity in the bowel. After 12 months of so I still wasn’t well - the surgeon decided a total colectomy with ileorectal anastomosis would help me - newsflash it did helped me a lot 4 years later I haven’t seems a gastro specialist since. During bowel surgery they found endometriosis - put a mirena IUD in place. After that surgery I was having abnormal uterine bleeding, i trialled low dose zoladex for a few years with no help and other medications to stop my periods as I was ending up in hospital every month due to pain and low blood pressure. I found a pain specialist up at WHRIA and he understood me and helped me with the uterine bleeding and pudendal neuralgia - pelvic floor spasms. I am not fully healed but still disabled and have a lot of mental health problems but I am healing. I am trying to make a life that is fulfilling despite the pain. The system in Australia for women with chronic pain is quite poor. I was judged a lot until finding specialists that understood me and took me seriously. I don’t take any opioids I don’t judge anyone that needs to for their pain but personally it just makes my pain worse and only on nerve pain medications such as Lyrica. Mindfulness and distractions have helped me a lot, having a list of people I can call when I’m in distress, LifeLine or other helplines for mental health. Whenever I’m in pain and cannot sleep I usually make myself a cup of tea, watch my favourite TV show and cuddles with my cat and dog. Just wanted to say as well you aren’t alone and chronic pain is very difficult it’s has it’s ups and downs - it’s a journey. You got this and don’t compare yourself to anyone as one person’s pain can be completely different to someone’s else’s, your experience though is very valid.

I have lived with chronic pain for many years, and have learned a lot about how to manage, but also how difficult it can be. I am glad Australia has organisations like Painaustralia to support those of us living with pain.

Where to start…. Lower back pain commenced during pregnancy and got worse following birth of my son almost 30 years ago… gradually got worse over the years until I was in pain sitting, standing and sometimes lying down. Eventually scans revealed degenerative disc disease - had to wait 12 months in agony to get surgery as did not have private health insurance, operation cost $11,000 out of pocket and took 12 months to recover from… then when covid happened and pools shut and I could not swim my physical condition deteriorated. Now doing lots of things to manage and reduce pain but still struggle - life is an ongoing battle

I did a TEDx talk about my pain story. It even mentions Pain Australia! You can see it on YouTube under my name

‘It’s Time’ Jodie’s Journey - 80’s to 2020’s. Read more of my story @ www.jodiesjourney.com Once upon a time, a young lady of the 80’s had perfect health & a future as bright as the stars. Marriage came, two daughters were born and suddenly, a lump was found, on the edge of the R breast. At only 34 years of age, with two small babes to look after - and a full time job in aerospace, she is suddenly in a place of absolute terror. I was ignored as a woman seeking help for my declining body. Over time - I’ve noticed a troubling trend. Women of all ages, including young girls are often ignored about symptoms and assumed that they’re just anxious about nothing. Unfortunately, disciplinary action is what occurs when concerns are ignored. This is exactly what happened to my former GP, plus 6 other doctors and 2 alternative practitioners who ignored my concerns in during an 11 month period from 2005 to 2006. It took 21 consultations before I was forced to go to the ED. In late September, 2006 - I went to the emergency department and my diagnostic reveal was shocking. Due to the delay to my diagnosis - I was now the owner of a spinal cord injury - with an eventual atrophied leg and constant nerve pain. I had stage 4 Follicular Lymphoma - eating through my body, into nerves, bones and muscles. The delay contributed to my cancer almost immediately returning and a further different blood cancer developed, due to the extra chemotherapy I needed to get rid of the 2nd relapse of Lymphoma. There are NO LAWS and NO PROTECTIONS for patients that can stop a practitioner from dismissing concerns about symptoms. Why not? IT IS TIME - IT IS TIME FOR WOMEN TO BE TAKEN SERIOUSLY every time they visit a doctor. Over a long period of time - triple cancer and then a bone marrow transplant - plus an avoidable spinal cord injury - my pain got worse and worse and now this is where I am: • Nerve pain S1 - controlled by 10mg Norspan Patch & 75mg Lyrica. (Spinal cord injury) • GVHD eye pain - controlled by Autologous serum eye drops. (Graft Vs. Host Disease - GVHD) • GVHD mouth pain - controlled by Steroid mouth wash’s and Cellcept. (Graft Vs. Host Disease - GVHD) • Allover Body Pain - controlled by Targin, Paracetamol, Nurofen + Bed Rest. (Central Nervous System Damage from chemotherapy agent called ‘Fludarabine’. Women often allow ourselves to be treated 2nd best - particularly in the doctors office. Ladies rise up and take control of how YOU want to be treated. Read more of my story @ www.jodiesjourney.com

I have had covid 6 times and have been left with residual problems. Re-occuring head sores. Irratic Insulin behaviour but worst of all Allodynis. Im currentl in bed today becuase if i move it is like fire on my skin. It even hurts to type. Today it is all over every surface of my skin. Other days not so bad . Bending my elbow is painful. all about and 8 0r 9 level.I am feeling so low with it and I hate being a burden and letting my own patients down. Dr put me on Endep low mg. But nothing seems to help. I want to go to sleep to get some relief. There doesn't seem to n any help and its not a common complication of covid. I live in a rural town where getting into a dr is months. The other day I made a poor choice to drink a bottle of champagne ... it worked but only as a diversion and an unhealthy one at that. So that won;t be tried again. !

My name is Lizabeth Milne, I am a 29 year old mum of 1, aged 5. I am severely physically disabled and I live with Chronic Pain every single day. When I was 18 years old I was in a motor vehicle accident that left me with A minor brain injury, severe bilateral leg injuries and minor upper body injuries which include but aren’t limited too, dislocating and breaking both ankles and knees, breaking my right femur in 2 places, partially cutting off my left foot, breaking every single bone in both feet, a broken left arm and a broken right clavicle. This was in 2012, I was flown from the accident scene to The Alfred Hospital in Melbourne where I underwent multiple emergency surgeries to reconstruct my legs and save my life. I was in a coma for 7 days, Where I received multiple blood transfusions and operations, when I awoke my journey to the life I know now was underway. Following my Coma I was an inpatient for many many months with repeat surgeries happening often to “correct” things they had noticed on subsequent scans. I went through many months of in-house physiotherapy where I learned to walk again despite the original prognosis being that I would be wheelchair bound. Upon leaving hospital there I was, 19 years old, severely disabled, unable to work with a new fulltime job of managing my disability and what would become my hectic life of juggling specialist appointments, surgeries and travelling to receive care as I was and am living rurally in Mildura Victoria. In the years between 2012 and now in 2023 I have undergone many more surgeries and inpatient stays as I navigate the medical system trying to control an uncontrollable disability. My body is actively decaying from the injuries I received that day and as a result I suffer from severe chronic pain. Some specialists I have seen have stated that my injuries are the worst they’ve seen and they are unsure what to do other than keep me comfortable as they can. Out of surgical options and physical therapy options 11 years post accident I am on a form of pain management that has been likened to end of life care, without the end in sight. I am one of few Australians who have received approval for multiple and ongoing Ketamine Infusions in Melbourne under a team of amazing specialists, but it wasn’t an easy journey to get here. In 2017 I had my son, pregnancy being severely disabled was incredibly difficult but I am lucky that I have an amazing support system in my family, mainly my Mum and my Husband. My pain was being managed by medication in the leadup to my pregnancy and monitored closely by my doctors as I was on Endone, Gabapentin, Endep. These medications are not typically safe for pregnancy but it was safer for me to be on the medications then off of them. I spent my entire pregnancy terrified that my son would be born with Neo-Natal dependency to medications, thankfully he was not. The year from 2017 to 2018 went relatively smoothly after my son was born, my body was going well enough and my pain managed. In 2018 I would undergo yet another double leg surgery on my ankle and my knee to clean out multiple spurs and growths that had made themselves known. However this time, the surgery would fail and leave me in more pain than before because my injuries and the growths were far worse than anticipated and caused the surgeon a lot of trouble. Coming out of surgery I was on bed-rest for 8 weeks, something I had grown accustomed too but what I wasn’t used to was the amount of acute pain I would begin to suffer daily. My GP at the time had retired and I was forced to see a new to the area GP as options are limited in rural areas. I was assured by the GP that I was seeing that she knew I was disabled and she knew what she was doing with my medications. She would go on to remove Endep and Gabapentin from my medication schedule and push me onto two different kinds of opiates, endone and palexia. I was unhappy with her course of action as mixing opioids is extremely dangerous and there is very little evidence to suggest that they work for my kind of pain, but I trusted my doctor until one day she stopped providing me scripts. She had flagged me a drug seeker and taken me off of her books without warning, I began to panic because she was refusing me medications, she had taken me off of my regular medications and she was also denying that I was disabled despite having access to my 30+ surgical reports, thousands of scans and specialists’ reports. I quickly transferred to a new GP who suggested that I seek out someone called a Pain management Specialist, something I had done in the past at the request of my surgeons but not something that I had thought to do in recent times. I was lucky enough to be able to link in with the Pain Management Specialist I had seen when I first had my car accident and they were quick to rectify the GPs mistakes. Taken off the endone and put on: Endep, Palexia, Baclofen, Panadol, Celebrex daily and we’d try: Ketamine Infusions. Ketamine infusions have proven to lower the use for medications and also lower the amount of pain that someone feels, my first ketamine Infusion was before the pandemic, and it went absolutely amazing. I walked out of the infusion on very minimal medication and right into a pandemic. While the pandemic was rampart, I was unable to receive treatment as the government ruled that pain management was NOT essential and this would lead to me going without a ketamine infusion for 2 years. My pain in this time got unbearable and almost unmanageable as my condition worsened with time. GPs under severe stress from the pandemic returned to “Take whatever you need to get through and we’ll sort it out later” mode. My ketamine infusions were reinstated in 2022 and once again my pain became “controllable” for 6 months at a time (if I’m lucky). But it doesn’t end there, that’s just the context. My pain specialist can only do so much, he doesn’t prescribe my medications, he just tells my GP what to do. My GP has stated more times than I can count that he does not have the adequate training and knowledge on severe chronic pain to prescribe and change my medication routine, this has led to MANY moments where I have had a fall or an emergency and I have ran out of my medication to him feeling stuck and unsure of what to do. A situation that causes me severe stress and I am sure to some extent him as well. Getting scripts a day or 2 early shouldn’t be so difficult but often it takes hours of negotiation and planning and pleading, lot’s of thinking and double checking that it’s safe on my GPs end. Living a life in chronic pain when you’re in your 20’s is really hard, it’s hard watching my family and friends get married, have babies, achieve their career goals while I spend many of my days in bed unable to participate in day to day life because I’m in pain or scared that if I do participate in life I’ll run out of medication and cause a problem for myself, my family and my extremely overworked doctor. Living with chronic pain and disability means that I’m writing this in my bed, I’ve been here for 4 days now after caring for my sick son all week and over doing it. It means that I’m writing this and I haven’t showered in 5 days and I don’t know when my body will allow me to shower because right now water hurts my body so much that I cry when it touches my skin. Living with chronic pain and disability means being embarrassed to be around your own family and friends because sometimes the pain is so bad that you become incontinent and mess yourself because pain makes you unable to control your bodily functions. This week I have cried, screamed, vomited, wet myself. I am severely depressed and I don’t see a future for myself because my specialists can’t tell me what we’ll do if the ketamine infusions stop working. I am 29. The average life expectancy for a woman in Australia that does not drink or smoke is 83 years of age. That would mean that I have 54 years left on this earth if I didn’t pass away sooner. There is no way that Ketamine Infusions will continue to work for another 54 years and my condition worsens every single day that I weight-bare. I currently have 0 cartilage in both ankles, 15% cartilage in both knees. I have the body of a 90 year old at the age of 29. Why am I still feeling guilty for seeking appropriate pain management services when my condition is extremely valid? Why does my GP feel inadequate in 2023 when he has MULTIPLE disabled patients. Myself and other chronic pain sufferers deserve the right to adequate and knowledgeable health care. My son deserves a mother that can manage her disability and efficiently so I am not bed ridden for weeks at a time. The really sad thing is, I am one of the “lucky” ones that has access to a specialist and treatments such as ketamine infusions and although my disability awards me little future I DO have access to services that the average Australian Woman DOES NOT. Before my accident in 2012, during my high school years I suffered from a condition called Endometriosis. This is a condition where your uterine lining grows on the outside of your uterus and on/around your other organs. I had undergone many key-hole surgeries to investigate and treat this condition and been sent home with just Panadol and a “you’ll be right”. In 2023 we have come to learn that endometriosis is one of the most painful conditions a human can endure. I also believe there is a strong bias against women in the pain management world, as I have witnessed the completely different treatments my husband and myself have received in our emergency departments. My husband is often offered BOXES of pain medication with repeats and a laugh, where I and many other women have been denied. The truth is I could write for hours about the intricate details of our system, a system I know so intimately. I could write about the 4 different pain management specialists I saw and about the one who told me to give up, it wasn’t going to get any better so I may as well just smoke weed until I eventually give up. (I have never done illegal drugs, drank alcohol or smoked cigarettes) I could write about the times that my pain has been so bad I’ve thrown up and my physiotherapist has rushed me to hospital only for them to say “we aren’t allowed to treat chronic conditions in the emergency department, go home” I am angry at a system that doesn’t work, I see everyone who is in it and I want them to know they are valid. I do not see a light at the end of my tunnel but I will fight for you all to have one at the end of yours. Good luck. - Lil