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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. (more…)

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. (more…)

Retrainpain.org

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It’s finally filtering through my brain: It’s going to be VERY hard work most days and it’s up to me to keep my butt in gear and stay on the treatment and management trail.

You’ll all be getting sick of reading my badger about this, but the research is out. Patient experiences have been in the making (for decades now), and the biggest sign that the hard work is cut out for people with chronic pain comes from the many who are now drug dependent with either increasing levels of pain or who sadly have lost their lives – not from the medication – but from the battle.

I get sick of filtering through paragraphs and words and med talk that I don’t quite understand (not to mention the pain levels soar for some peculiar reason) and as an artist, I still find it really difficult to present my pain experience to my readers, family and friends in a simple form.

(more…)

A new DVD resource, Healing the Pain ‘Down There’: A Guide for Females with Persistent Genital and Sexual Pain

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There have been many times during my years of chronic pain where I wondered, ‘Why didn’t I know that?’. Usually, the information is quite basic and I feel as though I’ve been deprived by never knowing something so crucial and important about my own body.

I was asked to view and give feedback before this thorough resource was released, and a few times, throughout the 284 minutes of run time, I asked myself, ‘Why didn’t I know that?’.

This DVD isn’t just about managing pain, but rather a clear and concise  resource for females… It should be put on some International educational agenda. (more…)

Arthritis & Osteoporosis WA, Making Sense of Pain June 26 – 27, 2015

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Calling all Health Professionals
“MAKING SENSE OF PAIN”
Our fourth inter-disciplinary workshop

Register now.
Early bird registrations close on 12th June!

Presenters & RegistrantsWe offer health professionals a unique opportunity to update their knowledge and skills and to effectively transfer them into their clinical practice setting.

Our experienced team, which comprises “pain champions” together with experienced clinicians and researchers, present a unique learning experience conducted in a user-friendly environment.

Date: Friday 26th – Saturday 27th June, 2015.

Presenters: Ms Melanie Galbraith (Physiotherapist), Assoc-Professor Vance Locke (Academic Psychologist), Ms Jane Muirhead (Occupational Therapist), Dr John Quintner (Physician in Rheumatology and Pain Medicine), Ms Mary Roberts (Clinical Psychologist).

Pain champions: to be announced

Venue: Wyllie Arthritis Centre, 17 Lemnos St. SHENTON PARK WA

[N.B. This workshop is fully catered and FREE on-site parking is available.]

For details and to Register or contact:
Melanie Galbraith, MelanieG@arthritiswa.org.au or
John Quintner, jqu33431@bigpond.net.au

View information about previous workshops

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?! (more…)

This Train is Bound for… Wholeville: A Travel Guide for the Perplexed

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Who would have thought that pain and the design process would have found a way to merge in my life. Design is however all about communication, and being a creative communicator I got wondering about how one can document their pain journey.

I also believe from my experience with chronic pain that the area is poorly provided when it comes to expression and language. How is it possible for a patient to describe their situation when their situation has no current definition or current way to be described?

So I thought of a concept! I called it Pain Train and two wonderful things were conceived from it. My soon to be publicised online resource, and a brilliant research paper by John Quintner and Melanie Galbraith.

Pain professionals, John and Melanie, are Pain Train’s first conductors and they have applied their exceptional chronic pain knowledge to the concept with their research paper, This Train is Bound for… Wholeville: A Travel Guide for the Perplexed (download or read below).

John Quintner and Melanie Galbraith are aiming to give people in pain sufficient knowledge so that they can meaningfully engage with their respective health care professionals.This-Train-is-Bound-For-Wholeville

(more…)

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. (more…)

Arthritis & Osteoporosis WA, Making Sense of Pain 14 – 15 Nov 2014

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Arthritis Osteoporosis WA logo(Report prepared by Melanie Galbraith and John Quintner, Course Co-Convenors. Read more on the Arthritis & Osteoporosis WA website: www.arthritiswa.org.au )

The third inter-disciplinary workshop for health professionals

The late Robert Elvey, world-renowned Perth Manual Therapist, to whom these workshops are respectfully dedicated, would have been delighted at the enthusiasm and expertise with which our course content was delivered. Most of the attendees were physiotherapists, but there were also a few occupational therapists, podiatrists, and nurses.

Presenters & Registrants As well being truly inter-disciplinary, the other outstanding feature was the participation of our seven Pain Champions, who engaged with the attending health professionals in an honest, open and non-confronting manner.

By the end of the second day, everyone, clinicians and patients, had been given the opportunity to experience what it is like to be together in the “third space” – a clinical space for healing where “you” and “me” can become “we”.

Day 1 was about how to create the therapeutic milieu, whereas on Day 2 participants were encouraged to acquire the necessary practical skills and explore how best to apply them to real life practice.

The presenting team, led by physiotherapist Melanie Galbraith and retired rheumatologist John Quintner, included Jane Muirhead, occupational therapist, Vance Locke, psychologist, and Mary Roberts, clinical psychologist (registrar).

Together they shared a wealth of knowledge and experience with participants, and gave them valuable insights into contemporary best-practice pain management and the various language traps to be recognized and avoided in order that they do not inadvertently stigmatise their patients.

Melanie contributed “hot off the press” news from the recent World Pain Conference in Buenos Aires. The most exciting advance was the isolation of the gene FKBP5, whose genetic variants can influence not only the severity of persistent post-traumatic musculoskeletal pain experienced during the weeks following a motor vehicle collision and after early life trauma. The field of epigenetics holds great promise in helping us to better understand many painful conditions and how to manage them.

Our Pain ChampionsThe strength and weaknesses of the biomedical and biopsychosocial “models” of illness were explained and participants were then alerted to an emerging paradigm for Pain Medicine, one that transcends the body/mind dualistic thinking so stigmatizing to many people in chronic pain.

Although analgesic drugs were mentioned during the workshop, their relative inefficacy for most patients with chronic pain was emphasised. Instead, more emphasis was placed on understanding the complex clinical manifestations of stress response activation and the clinical consequences that can be observed when these responses are unable to switch themselves off when the danger or threat is no longer present.

The presenters explained the important role of non-drug contributions to pain management that can be offered by the different health professionals. The common theme running through their presentations was the importance of clinicians listening to, understanding, and continually validating the experiences of their patients. The fact that empathy has two sides (positive and negative) was also acknowledged.

Course registrants were provided with a number of key papers to read prior to attending and were also invited to complete an online questionnaire specifically designed to make them aware of their own beliefs and attitudes towards people in pain. They were asked to again complete the questionnaire two weeks after the course had concluded. The results form part of an important research project currently being undertaken by Samantha Bunzli, School of Physiotherapy, Curtin University.

Judging by the completed Course Evaluation forms it is clear that we are providing a unique learning experience for health professionals and, indirectly, for people in pain. To the best of our knowledge, our course is a unique one

Comments from participants:

“Thank you for holding such a relevant and insightful course.”

“Good experiences. Particularly the opportunity to interact/hear from those with chronic pain. The Pain Champions were very open and should be congratulated. The ideal outcome would be to have a list of practitioners/clinics of “like mind” to refer to if necessary.”

“I have enjoyed this course so much with the added benefit of having pain champions to tie all the information together, Thank you!”

“Good energy, enthusiasm, and, importantly, authenticity. It’s very clear you all have ‘purpose’ in this area. I enjoyed it and the humbleness of the group.”

We thank Jamie Martin, Vanessa Watson, Eva Miller, Barb Grinsell, Ezra Tassone, Chloe Hope Johnstone, and Matt Fletcher for so readily agreeing to take part in this workshop and for sharing so much of themselves with participants.

Expressions of interest are being invited for the next workshop to be held in early 2015. Please contact John Quintner: jqu33431@bigpond.net.au or Melanie Galbraith: MelanieG@arthritiswa.org.au


 

Making-Sense-of-Pain-workshop-flyer2Event Date

14th Nov 2014 to 15th Nov 2014

Time

08.30 – 4.30

Registration Closing Date

7th Nov 2014

Venue Information

Wyliie Arthritis Centre
17 Lemnos Street Shenton Park WA

On-site

About the venue
Lunch, morning and afternoon tea provided.

Contact

John Quintner & Melanie Galbraith
John: 0419956418 jqu33431@bigpond.net.au
Melanie: 0405963658  MelanieG@arthritiswa.org.au

Registration

General
$375.00 ea

Event Description

What sets “Making Sense of Pain” apart from other Pain Management workshops and seminars? We show you how to put this information into practice and improve your interactions with patients to ensure more positive outcomes.

This workshop is dedicated to the memory of Robert Elvey [1942-2013], a WA pioneering physiotherapist (pictured on the flyer).

Event Information

  1. Other courses provide the ‘What’ – i.e. information about evidence-based management of people with chronic pain. We also provide the ‘How’ – how to put this information into practice.
  2. We show you how to improve your interactions with patients to ensure more positive outcomes.
  3. We involve ‘pain champions’ – real people with chronic pain.
  4. Our workshop is highly inter-interactive.
  5. You will have access to an on-line questionnaire.
  6. You can join a networking group of past workshop attendees and presenters.

On completion of the course the participant will be able to:

  • (a) understand the current status of Pain Medicine theory in terms of its relative strengths and weaknesses
  • (b) understand the potential role of dysregulated stress response systems in the symptomatology of chronic widespread pain (Fibromyalgia Syndrome)
  • (c) accurately assess the impact of chronic pain on the individual across social, psychological, medical and functional parameters (including standardized outcome measures)
  • (d) promote behavioural change and institute self-management strategies (participants will be exposed to motivational interviewing, mindfulness practice, relaxation, and techniques of education to promote behavioural change) and to know when referral to other health professionals might be indicated
  • (e) have a deeper understanding of the subjective experience of the person in pain
  • (f) be more aware of his/her personal attitude(s) and communication style when interacting with chronic pain sufferers
  • (g) understand the centrality of the therapeutic alliance in effecting positive change outcomes
  • (h) better communicate with the person in pain based on an understanding of empathy in all its connotations
  • (i) provide a person in pain with an accurate, empathic, and confident explanation of their predicament

Read about the presenters on the full post at Arthritis & Osteoporosis WA’s website: www.arthritiswa.org.au
View images from Making Sense of Pain 2013.

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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 aggrevated 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.

Pain Train my online health record

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