Why is it that despite their very real pain, genuinely impaired and crippled chronic pain sufferers are subjected to persistent suspicions of malingering on the part of workcover, employers and even physicians/IMEs?
When workcover deems your very real pain to be in your head: a very painful story
A question we often hear is, “Does s/he really have pain?” The answer I always give is “yes—all pain is real.” A person’s experience of pain is unique to the individual, and it can’t be measured from the outside, with the exception of sophisticated brain mapping available with a functional MRI, which is only in a few laboratories across the country. Since there’s really no way to know how much pain people are in except for what they tell you, our first inclination should be to believe what our fellow injured workers, friend, patients tell us.
Besides if you don’t have a brain you can’t have pain! Since the experience of chronic pain is subjective, it is often labeled “psychosomatic,” implying that the pain is psychologically driven. This brings up the natural question as to whether such pain is somehow less important or less “real” than “physical” pain based on visible X-ray changes and sensory input from the nervous system.
What we’re trying to explain is that these two cannot be separated: all pain is regulated by the brain—whether there is an actual nail in your thumb or an old injury that should have healed by now but inexplicably keeps hurting—in both cases it is nerve fibers that are sending messages to your brain that cause you to feel pain.
When you have “chronic pain” it refers to pain that continues after an acute injury heals or after the passing of a period of time that should allow for healing. Often, for unknown reasons, the injury or tissue damage doesn’t heal as expected, and because of this, the nerve fibers continue to fire as if there is damage that needs attention. With this unrelenting signal traveling up the spinal column to the brain, eventually the transmission circuits become more efficient at transmitting these signals—like a one-lane road becoming a four-lane highway. The continuous input into these circuits causes more transmission, with the net result being more pain. At the same time the number and array of pain-causing neurotransmitters in the nervous system increase. Over time, the threshold for the pain receptors to fire is lowered, and a less intense stimulus is needed to cause the nerve to discharge and send its signal. What started out as a message from the site of an injury to the brain has become a self-contained feedback loop within the nervous system—a disease of the brain….
Take the painful case of injured worker “V”
I worked in [censored] and was injured with RSI to both hands [a few years ago]. During my attempts to return to work this initial injury caused central nervous system sensitisation which has left me in chronic pain from roughly the waist up. I was prescribed [various pain medications] to assist with pain management and I eventually completed a rehab program at [a hospital] in [Victoria] during which I was taught how to use my body to minimise the pain and how to manage my emotions and stress levels to minimise the impact of these on my condition. They were very good at explaining exactly how central nervous system sensitisation works, using the NOIgroups’ resources, and I am still utilizing that training today. It has helped me through many painful and stressful situations since.
I was eventually retrenched from my job as it became clear that voice recognition software was incompatible with my software and I could not longer do the work nor work the hours that I needed to do the job.
My role in the project come to a natural end at about that time, and because they couldn’t deploy me elsewhere in the company due to my pain, they retrenched me.
My psychologist noticed this and thankfully I survived my suicidal moment and was eventually prescribed [nerve pain medication] which makes the pain a bit more manageable. I now self manage the dosage of my [this nerve pain medication[ with permission of the prescribing psychiatrist but I try to stay on x mg per day whenever possible as I find the effects on my cognitive processes is not so severe at that dose.
However the cold winter in [place] has been hard on me so during this winter I have been on the higher dose, alternating with lower where I could get away with it e.g when days were warmer.
I also use meditation, do some exercises at home to stay mobile and flexible and see a remedial massage therapist weekly who assists me with this and who helps me deal with the spasms which seems to have come with the condition.
I speak to a psychologist monthly or f/n depending on what is going on with my life, as she helps me with my ongoing struggle to adjust to my changed circumstances and with the challenges it presents to me.
I also stay on top of what is happening in regards to pain management and have tried accupuncture (with no success), hypnosis (only helped me with my meditation) and naturopathy, which doesn’t seem to do much.
I have offered myself as a guinea pig for current research at the University of [place] into pain, but they were only looking for test subjects who are not in pain currently.
I very much want my pain-free, drug-free life back, and keep believing it will happen, but for now, I try to focus on what I can do instead of what I can’t. It has cost me however.
Eventually my lack of sleep, irritability due to pain, inability to earn an income and to do much around the house contributed to the breakdown of my marriage and I am now trying to make a new life, without my [spouse], without my job and with chronic pain.
This year I decided to find another career in which the use of my hands is not so much needed and started studying [censored] at uni.
It has been good for getting me out of the house, for I had to move away from [Victoria] after my divorce due to ongoing issues and threats from my ex spouse and am finding it difficult to make new friends due to my limited ability to travel and the general busyness of people.
I felt it would be good for me mentally to be challenged a bit, it would get me out of the house and help me meet like-minded people and it will help me with planning a new future and a career where my pain is not such an issue.
I need a lot of help to study, but the university has been wonderful. I have a scribe for lectures, although many are recorded, and I don’t write exams because my memory and concentration is greatly affected by the [nerve pain medication such as Lyrica etc]. Still I am doing well and I hope that someday soon I will be able to be self-supportive again financially. I use voice recognition software with a recorder (to allow me to move around) and non-click mouse software at home to write assignments.
At home I do as much as I can for myself. I am limited though in how much I can do at one time and also there are some things, like vacuuming, sweeping, hanging washing and doing dishes, which are pretty much guaranteed to push my pain levels beyond the bearable.
I have had once weekly home help thus far, but it’s still not life like I used to know it. I look at how shabbily they clean and remember the days when I cleaned my own home and how much cleaner it was, but this is my life now, and it is not worth sweating the small stuff when it just makes me tense which makes me hurt.
It is easier now that I don’t have someone I feel responsible for, although the days when I cannot get to my part of the cleaning and laundry frustrate me and my housemate a bit still.
Independence is important to me, although I have learned how to ask for help.I ask my housemate to open things and carry heavy bags for me. But mostly I try to figure out ways around things, or other ways to do things.
Yet I am still struggling with the fact that my [former spouse] couldn’t or wouldn’t give me the help I needed, resulting in me some days staying without food or water as I couldn’t hold anything or open taps due to pain flare ups.
Those humiliatingly desperate days have left me with a strong need to regain control of my life and not to be dependent on people anymore. I want to use my brain to get me into a career again where I can work and pay my own way so…
However, because of this recent decision to take control of my life again, my employers WorkCover agent sent me for a visit to their specialists (incl a Psychiatrist) again, who concluded, contrary to their previous findings, ….
My GP strongly disagrees with these specialists as does my psychologist and I am taking this matter to conciliation as I feel my attempt to make a life inspite of my pain should not result in me being penalized and treated like some mental patient. Just because they can no longer see my injury does not mean that my pain is not very real.
I was an excellent worker and still have an excellent work ethic. I have, throughout my [several] years of pain, looked time and time again at opportunities for work, but so far all jobs require you to either be able to do physical labour, use a mouse and keyboard or to be able to drive.
At present I can pick up 3-5 kgs max, after which I have an increase in pain. I can use a keyboard for about 5-6 minutes and a mouse for less before the pain becomes quite intolerable. I can drive, although I need frequent breaks to prevent the pain in my wrists from becoming unbearable, but my GP suggests that driving is not a good idea for me, since the [high dose nerve pain medication] affects me to the point where I seem to not notice traffic signals and other vehicles.
Even as a uni student I struggle as I can’t hold a pen to write my own notes, struggle to sit for long periods of time, struggle with memory and still have periodic flare ups due to changes in weather and such which mean I cannot attend classes.
As shown in our posted People with chronic pain undergo significant victimisation, disbelief and stigmatisation, despite lack of objective findings in many cases, there is no doubt that chronic pain patients are suffering and are in genuine distress, and that the disability they experience is real! Yet, despite this reality, and since chronic pain sufferers are impaired by a condition that often cannot be supported by objective findings, they have been subjected to persistent suspicions of malingering on the part of workcover, employers and even physicians.
We believe that if you manage to obtain as many favourable reports from your treating doctors (which your insure will pay for), preferably also one from a reputable pain specialist, (see great doctors) and enlist the help of WorkCover Assist for your conciliation, you stand a good chance at proving that you are suffering from chronic pain, related to your workplace injury, and that you are not (yet) in a capacity to undertake work.It
We believe, from our experiences and interactions with many injured workers with pain syndromes that the strongest opinions taken into consideration are those of reputable pain specialists, as they are indeed specialised in pain syndromes, such as CRPS etc. It is also quite likely that conciliation will refer the matter to a medical panel, as it is basically a medical question.
One remarkable Victorian injured worker (who BTW score ZERO % permanent impairment for her extremely painful condition and who received no support from workcover) who is currently strongly advocating for more awareness for all chronic pain issues and more empathy and understanding for people in pain, is Soula Mantalvanos. Although her website is primarily focused on the painful pudendal nerve condition, she also features many resources and discussions around chronic pain.
[Posted on behalf of Workcovervictim]
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