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Trust me, I’m a patient: pain education for professionals from a lay perspective

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Lay member, British Pain Society Patient Liaison Committee

A young woman with arthritis talking about the rising tide of hostility to disability claimants says: ‘People think I’m faking. I’ve lost friends over it. Pain is invisible and hard for people to understand.’ How many of us could say that we have never thought that someone reporting pain is faking or, at the very least, making too much fuss? This is the society in which we live: intolerant of the pain of others. From childhood onwards we are told to stop whingeing and are often not believed when we report pain. Adults can be intolerant of their partner’s pain and in the workplace colleagues seldom treat kindly weakness of any sort.

These preconceptions and attitudes to other people’s pain are what professionals may have grown up with and may subconsciously bring to the clinical setting. Pain education for professionals should focus not only on the methods of treatment available but equally on the impact of pain and the need to listen to and believe the patient’s story. Pain is what the patient says it is and if he or she has come to you for help, there will be very few instances in which pain relief must be withheld whilst a diagnosis is sought. And yet, often pain management is not addressed until all the avenues of diagnostic tests, scans and specialist opinions have been explored. Students need good communication skills and empathy, and they should be encouraged to think about their own attitudes to pain and how these might affect their professional practice. They should learn that there are very few conditions for which pain relief must be withheld until a diagnosis is made. For the majority of people adequate pain relief can be achieved before a diagnosis is made.

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Yes, it is like taming a beast

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You’ve all heard the impact Prof Lorimer Moseley made on my pain journey – well my diagnosis actually.

If it weren’t for him I wonder how much longer I would have been left searching for the reason behind (pardon the pun) the pain. It took 4.5 years!

Lorimer’s research continues and this time he’s teamed up with some fabulous physiotherapists to make a lighthearted – but still serious, animation about chronic pain.

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Patient to Practitioner Access: Too Much?

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It all started with emails. I bet most medical professionals felt alarmed as email communication began with patients.

Wasn’t the existing scenario suitable enough? Call the receptionist – make several attempts to get through, rattle off suitable dates, wait for that day to come around, get to the waiting room, sit, sit and then finally release that conversation that’s been swirling in your head… if that’s even possible in the allocated 15 minutes.

I’m sure some medical professionals still appreciate and stick by this scenario. I know quite a few that do.

Isn’t life short enough?

Thankfully, my pain specialist (Dr Nick Christelis), and his team have progressed further, throwing their whole practice (Vicpain) on as many social media platforms as they can. Continue Reading

Not the fitball’s fault – it’s Nav1.7’s

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How a Single Gene Could Become a Volume Knob for Pain

(Excerpt from How a Single Gene Could Become a Volume Knob for Human Suffering by Erika Hayasaki | art by Sean Freeman 04.18.17 on Wired)

…When Stephen Waxman was a student at the Albert Einstein College of Medicine in the early 1970s, he became interested in painhow people feel it, how the body transmits it, and how, as a future neurologist, he could learn to control it. Later in his career, after his father was in the final stages of agonizing diabetic neuropathy, he became obsessed with helping patients like his dad, who could find no relief from their pain. “We simply had to do better,” he says. Continue Reading

Can virtual reality really soothe pain?

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How VR could break America’s opioid addiction

Can virtual reality really soothe pain? Jo Marchant meets the doctors who say yes, and who hope this is a solution for the country consuming 80 per cent of the world’s opioid supply: the United States of America.

“It’s like a crawly feeling inside,” says Judy*. “You get hot, then chilled, and you feel like you want to run away.” The 57-year-old has short dark-grey hair and a haunted expression. She’s breathless and sits with her right leg balanced up on her walking stick, rocking it back and forth as she speaks.

Judy explains that she suffers from constant, debilitating pain: arthritis, back problems, fibromyalgia and daily migraines. She was a manager at a major electronics company until 2008, but can no longer work. She often hurts too much even to make it out of bed. Continue Reading

Resources for Treating Chronic Pain by the Victoria Pain Specialists (Vicpain) …MY pain team!

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Forgive my bossiness but this post comes from a desperate experience that I lived for 4.5 years. That’s a long time for someone with increasing chronic pain levels and not much hope. I felt isolated and alone in a very foreign world without appropriate treatment, compassion and understanding.

Nine years later, I’m hopeful a situation like mine can be prevented with the knowledge provided in the following resources. Vicpain are leaders in pain treatment and management, I can certainly vouch for that!

Please read the resources, learn them, share them… and if you require information on chronic pain, follow Vicpain. Continue Reading

Dr Doidge, Are Some Brains More Plastic than Others?

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I never shop from my phone, but given Theo and I were away for the weekend (researching our next phase of life), I felt it was worth the risk responding to The School of Life‘s Dr Norman Doidge event and booked our two tickets.

Glad I did. The event was sold out within the week and over 300 people were on the cancellation list.

In 2011, after my peripheral stimulation device was implanted (and having my reading ability restored), I reached for  Dr Doidge‘s, The Brain That Changes Itself, and grasped the idea to contact Prof Lorimer Moseley who was referenced within the book.

That idea led to my diagnosis.

So my mind ran. What might happen if I actually met Dr Doidge?! Continue Reading

Pelvic Pain Foundation of Australia’s Melbourne launch

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PPA Launch - Soula, Lorimer and Anne-Florence

After 4.5 years and desperate, Soula took a stab and emailed Lorimer Moseley who kindly replied and suggested she contact Anne-Florence Plante. Anne-Florence diagnosed Soula instantly.

Melbourne launch March 24, 2015

I was thrilled to be invited to The Pelvic Pain Foundation of Australia (PPFA) Melbourne launch last night. I originally met Dr Susan Evans when I was invited to present my patient story at AIM Pain 2014.  I had cyber met Dr Evans prior, asking if I could include her details on this website, in fact I’ve ‘e-met’ many pain professionals this way. I never dreamt that one day they may all be in the one room together, all of us advocating for pelvic pain and helping start up a National organisation that addresses pelvic pain for women AND MEN.

Needless to say, last night I went on a magic carpet ride! Continue Reading

SBS Insight: Ouch!

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Last night SBS’s Insight program aired Ouch! How much pain can you handle? 

I thought the program was great and provided a great broad definition about pain’s many forms and the varying ways it impacts people’s lives.

As usual, I was waiting for a lead. Waiting to hear that someone with chronic pain had found a way out of it and was cured. Mrs Gleeson, I could have bet you were going to say you were fine, after all, you looked it! And so did Lesley Brydon, Pain Australia‘s CEO… how could she be in any pain?

Tonight was the night I was going to hear about my cure.

It didn’t happen.

That made me want to write this post… I want to write to those that felt the slump and weight of the thought that remained with them at the end of the program that went something like this: I’m never going to get better.

It made me want to write, don’t believe it!

Well I don’t believe it, I don’t accept that my body will remain in this rut as long as I live and I believe this because I can see I’m getting better sloooooooowly. Answering the following questions allow me to come to that conclusion:

  • How am I compared to a year ago?
  • How is my activity compared to a year ago?
  • How does my treatment compare to a year ago?
  • How are my pain levels compared to a year ago?
  • What is my creativity like compared to a year ago?
  • What is my work ability like compared to a year ago?
  • How much help do I need compared to a year ago?

My answers;  I am better, more active, having much less treatment, my pain levels are lower, I am more creative, I have sustained my work ability and I need a little less help. There!

It’s not the best answer, a year is a long time but I believe the thinking ‘It is what it is‘ as stated by Mrs Gleeson, almost allows an acceptance, a kind of peace with pain. I experienced that and from there I personally used that calm to pace me back to life.

It’s working.

I believe in brain plasticity, I believe in healing, and I am very well aware our brains are uniquely wired. I’ve always thought, the harder the task, the more committment, sacrifice and discipline required, and chronic pain is definitely the greatest task of my life. I don’t feel there’s another choice for me but to listen to my self, pave my own unique pain management, take in information from programs such as these and their brilliant guest professionals, and just do my best.

I believe I can make my own conclusion to ‘Ouch’… Chronic pain will not be with me forever.

What do I do with my trigger points now, Dr Quintner?

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John Quintner, Professor Milton Cohen and Dr Geoffrey Bove recently published a very controversial review – A critical evaluation of the trigger point phenomenon. Their article aims to show the hypothesis – “Myofascial Pain arising from Trigger Points” – formulated in the 1980s by Travell and Simons, is ‘flawed both in reasoning and in science’.

Being closely aquainted to John (albeit via cyberspace), I sought a patient’s explanation. What does this mean for me and others with chronic pain erroneously attributed to myofascial trigger points?

How many years have you been practising and researching chronic pain?

I commenced my career in rheumatology in 1975. My interest in chronic pain dates from 1985, when I admitted to myself that I had no idea about what was then being called “RSI”. Without a research background I was left with no other option but to learn “on the job”. I remember that some of my rheumatology colleagues would laugh at those of us who were making a serious effort to understand these conditions. But these were extraordinary times when a fierce debate over the validity of “RSI” as a compensable condition was raging across Australia.

Do you believe pain will be explained one day?

The short answer is NO. Attempting to explain the experience of pain is inextricably linked to our inability to explain consciousness. You could ask if we will ever explain LOVE and I would give you the same answer.

What might your research mean for someone with chronic pain?

Along with those with whom I have collaborated, and the list includes Professor Milton Cohen, Mr Robert Elvey and Dr Geoffrey Bove, my research has been aimed at shining the torch of critical scientific inquiry upon a number of complex and poorly understood conditions. From our attempts to do so, I hope that in some small way we have helped people in chronic pain to avoid the stigma that is so often conferred upon them by members of our society, including their well-meaning medical and other health professionals. Continue Reading

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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