Issue 28 / 23 July 2018

CHRONIC pain is daily pain that lasts longer than 3–6 months. One in five Australians live with chronic pain and many are disabled by it.

Chronic Pain Australia is the national voice of people living with chronic pain. Recently, through its 2018 National Pain Survey, over 1200 Australians living with chronic pain were asked what they needed from their health professionals, parliamentarians and the general community to help them manage their pain. This article reports the top themes emerging from that survey, using examples of the respondents’ own words to illustrate each theme.

One theme was the need for health professionals and governments to understand that mental health challenges and living with chronic pain go hand in hand:

“Increase the number of appointments available under a mental health plan to help me keep on top of the mental health issues associated with chronic pain, social isolation, and family breakdown” (Respondent no. 450)

Living with severe, poorly understood pain that is disbelieved, with scarce access to specialised care, can lead to despair, hopelessness and social isolation. Struggling to earn a living, losing important life roles, disrupted sleep, work and intimacy often mean that mental health and wellbeing suffers.

The majority of respondents to the 2018 National Pain Survey were female (83%), and the median age was 45 years.

People living with chronic pain want empathic, non-judgemental and well informed health professionals who want to listen and partner with them. They want validation that their pain is real, that their mental health is challenged by it and that resources for both pain and mental health are needed:

“Social isolation and mental health issues are at times just as debilitating as my actual pain, but there are not enough resources for either” (Respondent no. 235)

Pain is seen as mysterious by many who would ask their GP to:

“… help diagnose the problem. Mine has gone 3 years undiagnosed — having a name to it would allow me to understand it better” (Respondent no. 1215)

Over 75% of respondents indicated the urgent need to make medical cannabis available to people living with disabling chronic pain:

“Prescribe different pain relief, as after 5 years, the normal script medication isn’t as effective. Cannabis oil worked amazingly well for the very short period I tried it, but cost is prohibitive and supply chains less than credible …” (Respondent no. 1077)

However, Australian GPs struggle to prescribe medical cannabis, due to stringent federal government regulations:

“Legalise cannabis and make it easily available for chronic pain use as well as a variety of other health and psychological related problems” (Respondent no. 389)

With the majority of respondents (99%) indicating that they did not think the federal government was doing enough for people living with chronic pain, issues of financial access to strategies that work are central. As this woman living with severe pain for 20 years noted:

“I can only work casually for 16 hours a week, yet I was taken off the disability pension and put on Newstart. Therefore, I cannot continue a lot of my previous treatment, as I cannot afford it. I have lived with my mother for the past 20 years, as I cannot afford to pay rent to have my own place” (Respondent no. 25)

Access to the Disability Support Pension was a consistent theme. The invisibility of chronic pain leads to discrimination and stigma on top of financial hardship:

“It is a degrading process to apply for a disability pension with a diagnosis of chronic pain, as it is an ‘invisible illness’ [and] there is no ‘box’ that we fit into to apply, often resulting in rejection, more pain, suffering and poverty. Please have staff with the skills to assess the supporting documentation specific to the impact of chronic pain on the person’s ability or inability to work” (Respondent no. 567)

Currently, the federal government allows five allied health visits per calendar year for people living with chronic disease. Respondents feel that this is inadequate:

“Medicare does not cover gym membership and supervised programs … does not cover dietitians or massage … Disability pensions do not cover the gap. Many of us are stuck … [Chronic Disease Management] plans are not enough” (Respondent no. 204)

Earlier this year, the federal government restricted access to codeine in pharmacies, and there has been much public discussion about an “opioid crisis”. This has led to distress and stigma for people living with chronic pain. The federal government is cautioned to take care when demonising medicines:

“Stop demonising opioids. It’s hard enough to get to the chemist to get medication as it is, without having to see my GP for a script for something I used to buy over the counter” (Respondent no. 590)

“The federal government should be listening to us, the people living with chronic pain. I’m sick of being lumped with people who overdose on opioids, legal or otherwise. [Ninety-nine per cent] of us are being punished because of the actions of 1% of the population” (Respondent no. 982)

All health professionals including GPs, pharmacists, allied health and others were asked to be less judgemental of people in pain:

“Don’t judge a book by its cover — education — there needs to be more awareness about ‘invisible illness’” (Respondent no. 723)

It is clear from these results that people with chronic pain continue to struggle within systems that are promoting stigma, poverty and disability.

What can people in pain do for themselves to protect their mental and physical health and wellbeing?

Staying connected is crucial. Chronic Pain Australia runs a free 24/7 forum for people living with chronic pain. Here, people with pain are welcomed with values of compassion, non-judgement and understanding. Many forum participants indicate that they have avoided suicide because of the friendship and support they find on the forum. The Chronic Pain Australia website also has some top tips for free resources that people with chronic pain find helpful. For more information about the National Pain Survey 2018 results, which are made public today, visit the National Pain Week website.

Dr Coralie Wales is the president of Chronic Pain Australia.

 

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or MJA InSight unless that is so stated.

To find a doctor, or a job, to use GP Desktop and Doctors Health, book and track your CPD, and buy textbooks and guidelines, visit doctorportal.

5 thoughts on “People in pain want to be believed

  1. John Quintner says:

    Coralie, the findings from your review show that nothing seems to have changed for the better over the last three or so decades.

    Perhaps the current definition of pain, which was adopted in 1979 by the International Association for the Study of Pain (IASP), should be revisited: “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”

    As we see the situation, there are three main stumbling blocks of the IASP definition: (i) privileging the stance of the observer over that of the experiencer; (ii) the link of pain with “tissue damage” which, although denied, again focuses attention on a problem of/in the body, as distinct from a problem with the body; and (iii) implied equivocation about its veracity when there is no nociception.

    Our reconsidered definition is currently being closely examined by an IASP Task Force: https://journals.lww.com/painrpts/Fulltext/2018/04000/Reconsidering_the_International_Association_for.3.aspx

    At the very least, it places much more emphasis on recognising the plight of those who responded to your questionnaire

  2. Anonymous says:

    I had a cervical disc prolapse from a spear tackle at rugby followed 3 months later by a skiing injury to my neck which produced paraesthesiae in both arms when still a medical student. There were no CT or MRI scans then so I sucked up the daily pain, which could be intense, and got on with my career by focusing on the future and aware that you don’t get another chance at life so I had to make the best of it. I kept skiing too. 25 years later I developed C7 radiculopathy so had a MRI scan which demonstrated cord changes consistent with partial spinal cord injury and went on to have a 2 level vertebectomy and fusion. I’ve since been the unfortunate recipient of lumbar surgery on 2 occasions, but am still working, skiing and doing triathlons.
    My work in recent years has included medical assessment tribunals as well as private practice.
    The tribunal work helped crystallize my impressions gained over years of private practice, with the high concentration of chronic pain complained of at the tribunals. In nearly all cases the complaints could not be accurately correlated with the existence of accepted anatomy, pathology or physiology. However, in almost all cases there was a co-diagnosis of anxiety and depression before and after the very minor work “incident” which allegedly precipitated their disabling pain. All reasonable medical and surgical treatments had not reduced their pain.
    My personal experince and those with my patients over the years has lead me to conclude that there are two cohorts of chronic pain patients.
    There are those who have genuine chronic musculo-skeletal pain, who can still function at a high level. And there are patients who have mental health problems who complain of non-mechanical and non-anatomical pain, which is unfortunately reinforced by well meaning and concerned doctors who are not careful enough to correlate the “injury,” history, anatomy and pathology. Too many times I have seen symptoms ascribed to a physical condition with no consideration of the patients mental health. It was certainly not taught when I went to medical school and I regret it took so long for me to develop insight into this apparently insoluble problem. My focus in recent years is to educate the patients about pain perception and try not to exacerbate their problems with unhelpful treatments.
    Chronic pain does not invariably cause anxiety and depression. Disability is most commonly due to their mental health in my experience.
    Their strong desire to be believed that it is a somatic disorder is understandable but then leads to incorrect treatments, instead of addressing their real problem of mental health issues. Should you believe the ideations of a schizophrenic because they believe it to be true, or stop at believing that they are suffering but not due what they think is the cause of their problem.

  3. John Quintner Consultant Physician in Rheumatology and Pain Medicine says:

    Dear Anonymous, your views (“in my experience”) are those that prevailed during the 1980s when Australia was experiencing an epidemic of what was then called “RSI”.

    Such views, which I have termed “psychalgic fundamentalism”, proved extremely damaging to many pain sufferers.

    I had hoped that those medical practitioners who serve on tribunals (and medical panels) now have a better understanding of the neurobiology of pain.

    But in the light of your comments, I must conclude that this is not the case.

  4. Anonymous says:

    I see the same type of patients as “anonymous” above but I work as a physiotherapist and exercise physiologist (mostly patients with spinal, musculoskeletal, crush and traction type injuries). Most are work related injuries and THEY often have better access to evidence based care (than medicare and private health patients) as they do not pay ‘out of pocket’ expenses and can have the right treatment, if justifiable and outcome based. My compensable patients actually do better quicker than the non-compensable patients for this reason because the private and medicare patients often CHOOSE what they like (which is not surprisingly often non-evidence based “passive” treatment, sometimes with little bouts of active exercise that is not specific enough to be graded in a timely manner to match their activities of daily living/work/sport requirements). Patients need to be challenged with new ‘achievable’ tasks each session or two (with home exercises in between) to show them that they have control over what they want to achieve and gain mastery over each task they think they cannot do. After all, those that achieve more are not sitting at home and focusing on pain, they are getting about and about again and are too busy to dwell on their pain.

    I actually prefer to see patients in a gym or exercise setting where there is a focus on ability and achievement. I have done this for 25 years now and have been challenged by independent WorkCover Independent assessors and experts over the years but finally there is more evidence is coming out about exercise and its benefits (physical and psychological).

    The only problem is that I see patients too late, often about 3 months or more after their injury & in that time, they are further deconditioned, have more weakness/muscle tightness that influences their pain and more psychological symptoms that also influences their pain. I really think that GP’s need to be educated to follow an easy algorithm for pain patients to enter into early but also at various stages post injury for specific management at each stage.

    My patients tell me that they feel as though if they are seen shopping and doing daily activities (whilst in severe pain), that they will not be ‘believed’ that their symptoms exist, so they further avoid movements and activities of daily living. Some don’t even know that they are ‘allowed’ to move and walk and have lost cardiovascular fitness and gained substantial weight secondary to their loss of function and pain. It astounds me that they are not educated prior to the 3 month stage on starting small amounts of light physical activity (eg combination of walking, gentle stretches to maintain flexibility and reduce tension, and graded strengthening exercises to maintain and further improve strength) which will not just provide physical gains but also psychological gains in the early stages and prevent chronicity in most cases.

    Sadly, I have often been the first to encourage my patients that it is OK to do all of their usual things (where there are no contra-indications or precautions present) and tell them it is “OK” to do their usually daily activities which is reassuring for them. I ask them who are the “activity police” stopping them and it is usually themselves. Some have been advised to “listen to their pain and stop moving” whilst sometimes it is OK to have some pain with activity as it will not cause “damage to their body” (a common belief) as long as the pain is manageable. I usually tell patients that their function will improve significantly for their same level of pain and any decrease to pain intensity and area is a BONUS. That way, there are no unrealistic expectations at the beginning as pain is very subjective and influenced by many factors which should be explored on a continuum with conservative exercise treatment to address what influences THEIR pain specifically.

    I have had some employers cause additional stress for my chronic pain patients that are still employed because, for example, they have questioned the injured worker about how they can go to the beach and walk in summer but cannot lift 10kgs at work. That is often followed by a laugh, a shake-of-the-head, a walk away by the person in question at work. I often have to phone the employer (with my patient’s permission) to educate them (or ask them to educate their staff) on pain and the importance of activity and that unhelpful adverse comments at work can influence psychological symptoms and cause distress which can influence pain and it’s behaviour and thus affect our goals of achieving the “10 kg lift”. This employer education has always been helpful.

    Many patients feel they are not heard, not believed and misunderstood (by employers, spouses, family, doctors, etc). So, they DO want an answer so they feel believed. They DO want actions. They DO want to try to prove to everyone that there is evidence for their symptoms. They DO mostly have psych related issues related to their injury (anxiety, depression, fear of movement, personal or financial stress, etc) which needs to be managed at the same time. They DO want to help themselves and DO NOT know how to. Many are also ill-advised or mismanaged by their GP’s or allied health professionals with passive treatment referrals, so they are the “piggy in the middle”, controlled by everyone, having no control over themselves anymore. Lawyers also play a role in adding confusion and loss of trust in stakeholders. Disempowerment occurs for that person and it is like going to a funeral for themselves where they have lost the person they once were. They are grieving their loss. They need to be helped to get back to who they were and that takes a good doctor or health professional to find out WHO they were and WHAT they liked doing, to get them back there.

    I am lucky to have ex patients still attending the same gyms where I see “newies”. The ex patients are those who have achieved their goals or plateaued with their function after improving (but may not be free of their pain) and they still attend the gym (and sometimes pool) as “maintenance and prevention of symptoms”, as they would when they brush their teeth, for example, and incorporate these preventative activities into their daily routine.

    The gym, pool, outdoor exercise settings are great because they are motivating and social settings which takes away the ‘negative focuses’ (eg focus on limitations, pain and perhaps original cause of injury). Ex patients have learned that the psychological benefits of exercise helps them be IN CONTROL of their pain, rather than the other way around. They often see people in those settings doing more (even people that were far worse off than them initially). I am so glad the Invictus Games are being held here because I have more examples to motivate my patients with soon.

    I find that seeing people outside of a ‘sick role’ or ‘clinic’ type setting helps me listen to patients more positively, provide some empathy for their symptoms (so they know they are being heard) but at the same time, the surroundings make them “get onto it” with their goals. I find that working in a community gym helps me get to know the patients “outside of their pain” and talk about other important matters in their lives, whilst at the same time, subtly educating these pain patients to change their focus on achieving functional independence. They can manage their pain at any time in these settings without a reliance on me in the long term. Sometimes it takes time, a lot energy, CBT+++ and extra self-initiated work (outside the square) for me to call the GP, Specialists, psychologists, employers to make sure we are all communicating because a lot of that is missing in pain management and it just takes a phone call and a quick email or fax to confirm the discussion to all parties & the results are SO rewarding in the end.

    I love videoing my patients on day 1 when they appear lost and fearful of the gym setting and then again after a few weeks or months when the OWN the gym and have all or most of their life back again where they can make decisions again. As part of their rehab, I make sure some of them receive these ‘;before and after’ videos from me sometimes by SMS. The response is often a laugh or they are shocked at where they were once, saying “I cant believe I was that bad and in that much pain”.

    The psychological side of things is the biggest component of my work, but I have to say but I am fortunate that I have had a background where I have worked with teams of psychologists. I still need to educate the patient to see a psychologist a times and go there with a list of where they want to be and empower them to ask their psychologist to teach them strategies on how to get there. Some patients tell me that their psychologist just listens and does not teach them strategies on adapting new behaviours, coping mechanisms for pain for things that cause them stress, anxiety, depression which can affect pain. They often need to be empowered to take control and change to find the right treatment professional.

    Providing empathy to our patients, understanding the issues that need to be managed, having a good rapport, making exercise sessions an enjoyable experience, providing some humour and laughter during your craft of providing ‘exercise as medicine’ achieves a lot and is actually quite simple. When the patients thank me, I tell them to thank themselves because I just talked & I did nothing whilst they did ALL THE HARD WORK! There is no better feeling than seeing a smile on the face of the person that once walked in for their Initial assessment looking like they were grieving at someones funeral with a shuffling gait (even for neck or upper limb problems) and then moving fluidly out the door with a regained sense of self, function and life. The thrill of hearing that their relationships with their spouses and family members has been repaired is also rewarding as some marriages and relationships are on the brink of destruction by ‘chronic pain’ as the person is changed by their pain.

    It takes a good relationship with your patient to be able to be the ‘detective’ to get into that person’s life and know who they once were and work out all the barriers to getting them back to who they ‘were’ . This is why I love the multifaceted challenge of chronic pain.

  5. Coralie Wales, President Chronic Pain Australia says:

    John Q thanks for your helpful comments, as always you have a depth of experience and knowledge which supports the real experience of people living with chronic pain

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