There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
I had a psychologist who said, ‘people like me, were ‘CASH COWS’. At $180 a session, his treatment at times involved closing my eyes and focusing on the blue ocean. Visiting him for six weeks was a government requirement in order to access S8 pain meds. My meds cost around $400 a month. At the time Lyrica was not subsidised by the Australian Government and I was paying $140 a month. Additional costs included acupuncture, massages, GP bills and specialist bills.
Some Pain Clinics exploit vulnerable patients. A clinic I attended introduced laser therapy, with scented candles. I was attended by a sweet lady who had no idea how to use the laser. Cost another $80. The exercise was two years too late because by the time some doctor thought that perhaps this woman was truly incapacitated with pain, I had progressed from acute to chronic pain.
I attended this clinic since 2005. The pain specialist decided to introduce a course for chronic pain patients. It was now 2011. Before being treated by him you were required to attend a daily course on Chronic Pain, $300 and no rebates. The presenter was not a medical professional but a pain sufferer.
For the first two years my doctors failed to believe or act on my pain effectively. I sought validation. I took scans, x-rays, MRIs, you name it to no avail other than the lumber spine and scoliosis. I was so over hearing that ‘pain is subjective’. If the pain causes you to pass out when you stand up from your desk or you need to stop your car on route to work, and lay in your back seat while strangers stop and call for an ambulance. All this despite having taken my daily meds. It’s hardly subjective. To this day, I am unable to sit or stand for too long.
Following an infrared scan, another thing introduced into the wonders that became pain clinics. The radiologist indicated in a shocked voice that I had ‘chronic regional pain syndrome’ the worst she had seen. No doctor had ever mentioned that to me before or after. That scan cost $199 and other than chronic levels of red markers all over my body the scan indicated possible future issues with my right breast, and it happened exactly as predicted. The nine biopsies they did may have had something to do with my ET. The scan also indicated a small blockage in a small vein at T6/7, a possible small clot. Has anyone heard of prolotherapy? I paid well for those ridiculous treatments. Another pain clinic initiative.
In 2008, I had a peripheral nerve simulator inserted at thoracic T6/7 level. I never changed the setting or turned the machine off. Nearly four years later, I lost a number of contacts on the system, they had become undone and the machine ceased to function effectively. I was unable to find someone in Brisbane who could repair it, so my Doctor encouraged me to have it removed. That peripheral stimulator cost about $42,000. Mostly paid for by my insurance company. I would pay for it again. I loved that machine as it reduced the benchmark of the pain. It was hundreds of times more effective than the tens machines. I halved my Oxycontin dose overnight without any withdrawal symptoms. I remained on the Lyrica. The clinical trials for Lyrica indicated that the dose for chronic neuropathic pain was 450mg daily. I experimented and listened to my body until I found a dose that worked for me, at the time it was 300g each morning. I am now on 150mg but in the early days I was on 1,200mg daily. I occasionally have spasm attacks in my thoracic region. I have had two dreadful night attacks this week. Very hot showers where I lay on the shower floor, increased daily meds and a hot water bottle filled with boiling water are my saviour.
I gave up work in December 2011, as a result of my condition, going off Oxycontin, taking 200mg long acting Tramadol, 150mg Lyrica, 100 Aspirin and 500 Hydrea has slowly improved things. I also have Rivotril that I take when the thoracic pain starts to spark up. The pneumonia that went undiagnosed for 9 months really messed me up. I still struggle to do anything active. I am now walking with my stick; it helps but I seldom leave the house except to visit my ageing parents.
I have regular blood tests and over the years my platelet count has sat around the 600 mark, when my platelets reached 1,000, I started oral chemo. My platelets are now at +500 mg on Hydrea. No specialist during my chronic pain journey mentioned the high platelet count. Yet the high count was demonstrated on every blood test. I am talking years. When I questioned my then GP on it, as I was having a low grade fever of 37.4, 24 hours daily she dismissed me. I continued to seek answers for my pain, never realising that I had been living with a chronic blood cancer. I knew from my own research that I had Thrombocytosis’ but I never researched Essential Thrombocytosis. It was a move interstate to Queensland and the remarkable doctor I met who explained that my high platelet count could lead to Acute myeloid leukaemia (AML). So I conceded to a bone marrow biopsy. The results indicated Essential Thrombocytosis Jak2 mutation. A chronic blood cancer that forms part of the Myeloproliferative Neoplasms (MPN).
It's too important and profitable for doctors, drug companies, researchers and others in the medical field to access grants and other funding regardless of any conflicts of interest. They must produce results. I am sure we all remember the thalidomide story! Thalidomide, lenalidomide and several newer versions of this drug are now used to treat some blood disorders such as amyloidosys.
I am passionate about medical research but somewhere along the way people must come before profits. I had never heard of the word "Oxycontin" when it was first prescribed. So, I researched the clinical trials. As it was a new drug intended for short term use there was no data on the long-term side effects of taking this drug. However, when I expressed my concerns about the Oxycontin my rheumatologist informed me in a stern manner that I would be on it for life so get used to it. When Oxycontin first became available, incentives were offered to doctors who believed that it was the best new treatment for chronic pain sufferers. What a horrific drug! And so it goes …
Living with chronic pain is difficult, it can affect one's personality with side effects such as rage. Those who suffer the most are families. How does one apologise for that?
Anna
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