Chronic Pain and how the June 2020 Changes Affected Me
Neen understands all too well what it means to live with persistent pain.
I have lived with daily chronic pain for over fifteen years. Eleven years ago that pain became severe, and eight years ago the pain became disabling. The first thing I feel in the morning when I wake is pain and the last thing I feel before I fall into a sleep of pure exhaustion is pain. In between, my pain medications give me four to six hours of moderate pain relief, depending on the day. I am never pain free.
I do many things to manage this pain. I use heat and cold packs, I do regular physiotherapy, hydrotherapy and I exercise as often as I’m able. How much and how intense that exercise is depends on my pain levels, some days are better than others. I have had multiple surgeries and procedures, radiofrequency ablations and cortisone injections directly into various joints. I use meditation and mindfulness techniques; in fact I studied these at university level, because they are so helpful for me. I also use medications. Opioid pain-relieving medications.
My opioid pain relieving medications are my cornerstone treatment.
They reduce my pain enough so that I can employ all the other pain management tools. Without my opioids I would not be able to exercise or do physiotherapy or even hydrotherapy.
My pain comes from various kinds of inflammatory arthritis – Rheumatoid Arthritis, Ankylosing Spondylitis and Mixed Connective Tissue Disease. Despite treating these diseases, I still have flare ups a few times a week. I also have peripheral neuropathy in both feet, hands, arms and legs. It feels like a thousand needles constantly sticking into me, on a good day and an intense burning pain on a bad one. The neuropathy is rising ever higher and affecting more of my body. Recently, it has started affecting my face.
I also have a very rare bone disease, which is something along the lines of Osteopetrosis (although it’s not actually osteoporosis). It means I have very dense, hard but brittle bones. This has caused early onset Osteoarthritis, mostly in my spine. My lumbar and cervical spine are the worst affected, but I have degenerative changes along the entire length of my spine. Facet Joint Arthropathy, Stenosis, bone spurs, Spondylolisthesis, herniated disks - more pathology than you can poke a stick at! I also had compressed nerves, the worst being my sciatic nerve. This caused partial paralysis, bladder and bowel control issues and the worst neuropathic pain I have ever experienced. It was as if the nerves were constantly switched to the ‘on’ position, constantly generating severe pain.
In February 2020, I had three levels of my spine fused to relieve the nerve compression, and by this time the lower back pain was so severe I could no longer walk.
Both legs were partially paralysed, and without the surgery I was looking at paraplegia and full-time wheelchair use.
The surgery and recovery were extremely painful, but it was a resounding success. Two months into my recovery I decided to taper my opioids. I was on a high dose, 40mg two to three times daily, plus another 20-40mg for break through pain. With the pain relief that the surgery brought I was hoping to taper off opioids completely.
My GP suggested a 10mg per month taper, which went well until May 2020, when I reached 10mg three times daily. My pain was no longer controlled at that point and I was again spending most of my time in bed. Exercising is essential for my health, specifically for recovering from the spinal fusion, so I asked my GP to increase my dose back to 20mg, two to three times daily.
She refused. “The rules are changing and all patients on long term opioids needed to be tapered off,” I was informed.
I was well aware of the changes to the regulations which would take effect in June 2020, but they were never designed to force people off their opioid pain relieving medications.
Unfortunately, many doctors misunderstood or misapplied the regulations, and I was one of many patients who were force tapered. Because I understood the changes, I had already made an appointment with my pain management doctor, under whose care I’d been for four years. He agreed to prescribe 20mg twice a day, with up to 20mg a day for breakthrough pain if needed.
Slow-release oxycodone is supposed to provide pain relief for twelve hours, but I am among the many people who metabolise the drug more quickly. This is a known phenomenon and there are plenty of medical studies describing it. It’s a matter of biology and genetics, some people are fast metabolisers, and some are slower. Different people get more or less pain relief from the same dose of opioid medication. This is why pain medications have to be dosed according to the individual, their metabolism and the severity and duration of their pain.
Previously my pain management doctor understood this and was happy to prescribe the slow-release oxycodone 8-hourly, rather than 12-hourly. Now he was suddenly refusing to do that; I was only allowed to take my medication twice a day.
These changes mean that my pain relief stops after eight hours.
At that point I have a choice, either take my dose early and be able to continue to function, to work, exercise, cook dinner, or spend the next four hours with my pain untreated lying down. Then take my dose at the twelve hour mark and be able to sleep at night.
I can either have my afternoons or I can sleep at night, I cannot have both.
I almost always take my medication at 3pm and choose to have more hours in my day. This means that by 11pm my pain relief has worn off and every night I lie in bed in terrible pain. I get little sleep, wake often and am usually counting down the early hours of the morning until 7am when I can take my pain medication.
I couldn’t understand why my pain management doctor was insisting on keeping me at the lower dose, despite clear evidence that I was doing better on a slightly higher dose. Finally, I realised that he was keeping me under the 90 morphine milligram equivalents (MME) that have had such disastrous results in the US. The CDC proclaimed in 2016 that “…No patient should be on a dose higher than 90MME,” and as a result hundreds of thousands of patients were force-tapered to lower doses, or off opioids altogether, resulting in an epidemic of untreated and under-treated pain.
Since June 2020, and Australia’s new regulations, the same has happened here, despite there being no reputable evidence that keeping patients under this threshold improves outcomes.
In fact, the evidence says the reverse. And now, the CDC has recanted these arbitrary limits and is rewriting their guidelines, because they have seen that they were terribly flawed and resulted in much patient harm.
Still, Australia goes down the same disastrous path, force tapering people to doses of opioids that no longer effectively control their pain.
Over the last 18 months I have had three appointments with my pain management doctor all but begging him to reinstate my previous dose. He has shuffled my medications, changing doses, trying 15mg twice or 10mg three times daily, more break through medication or less, but always the cumulative dose is less than 100MME. A meaningless, arbitrary marker not based on evidence or science.
I am asking for 20mg of oxycodone per day more. This is a very small dose increase, but it makes a huge difference to my quality of life.
I chose to initiate this taper. I hoped to taper of opioids completely, or maybe only need them occasionally. But failing that my goal was to find the lowest effective dose of opioids that could manage my pain.
My doctors have tapered me to a point that is just under where my pain is controlled.
While I am grateful for some pain relief, and I know others are far worse off and unable to access their opioid pain medications at all anymore, it is hard for me to comprehend how my doctor can see this as ‘success’. This is not pain management; this is a ‘tick and flick’ exercise to appease politicians and policy makers. Policies that are not based on pain management or science.
I have shown him ample, objective evidence that I was healthier, fitter, and happier when I was allowed 20mg more of oxycodone daily. I was able to exercise for an hour, five times a week. I was working part time. I was doing my own shopping, going out to coffee with friends. I cleaned my own house. I cared for my family. I could drive a car.
Now? I exercise for fifteen minutes twice a week if I’m lucky. My general health and fitness has decreased, I’ve gained weight and my heart rate is twenty beats per minute faster than it was two years ago. I have lost strength and muscle mass. My risk for heart disease, stroke and cancer has all gone up and I am mostly housebound. My business has all but gone under, and I am completely reliant on the disability support pension. I alone support my two children and we live well under the poverty line. I have two or three functional hours a day, but some days I’m not able to get out of bed at all. I have no social life, no friends anymore. Most days I can’t drive a car. I have a cleaner and a gardener and I need help with basic self-care. While I am not depressed, my quality of life has decreased radically and the worst part is that there is no reason why I should suffer this way, other than misguided policy and misapplication of that policy.
My pain management doctor has condemned me to as life of poverty, poor health and an earlier death by reducing my pain relieving medications.
When I first discussed tapering my opioids with him, he promised me “…That my pain would improve as I lowered my doses.” He explained about opioid induced hyperalgesia (OIH) and how “…Sometimes opioids made pain worse long term.”
This is not how it has been for me. My pain levels have increased as I have decreased my opioid dose. I do not have OIH. In fact, I researched OIH and found that there is controversy as to whether OIH exists as a clinical entity at all. Most believe it does not. It is certainly not an evidence based reason to force taper a person to a lower opioid dose.
And of course, my pain management doctor broke his promise – clearly my pain, function and quality of life are all worse, but he will not reinstate my previous dose. For the sake of 20mg of oxycodone daily, I live a life of unnecessary severe pain and disability.
I have no recourse. I could see a different pain management doctor, but there is no guarantee they would be any different. And I risk being accused of ‘doctor shopping’. Additionally, my reason for seeing a new doctor is to ask for a higher dose of opioid pain medication, and this is a ‘red flag’ for addiction. The new doctor could decide I have opioid use disorder and take away my medications entirely. The risk is too high, I have no choice but to be grateful for what I have. I accept that I must live with constant, severe, daily pain.
So this is my life now. Living with severe, daily pain is a terrible thing. Living with severe, daily pain when you know there is a safe, effective treatment available but you are NOT allowed to have it, is pure torture.
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