I have a soft spot for Norman Doidge!
I have a soft spot for Norman Doidge!
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:
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.
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.
For Patients with Chronic Pelvic Pain
SEPTEMBER 25, 2015
Sheraton Annapolis, ANNAPOLIS, MARYLAND
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?
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.
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.
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…)
I don’t think I need to write an introduction for Dr Echenberg or Bridge for Pelvic Pain. The only explanation I feel I need to give is that I was drawn (pardon the pun!) to Dr Echenberg’s fabulous ‘patient expressions‘ web page on his site: www.instituteforwomeninpain.com and had to send him an email.
I landed on The Echenberg Institute website after participating in the Pain Pathways facebook chat. From there I was also contacted by Carin Willis, the Founder and ED of Bridge for Pelvic Pain who also took the time to send me a very touching email expressing her appreciation for The Hurting Strings and requesting that we connect and stay in touch. Carin was also kind enough to send this review:
Soula’s video about her literal fall into chronic pelvic pain (pudendal neuralgia) is one of the most profound short-films about chronic pain and its affects on the patient and their families and care-givers I have seen to date. I highly encourage anyone dealing with chronic pelvic pain to watch Soula’s video “The Hurting Strings” and to share Soula’s message of patient advocacy, having a good support system, and to focus on the possibility of hope that shimmers through very dark days.
Considering Dr Echenberg is the Founding Board Member of Bridge for Pelvic Pain and a member of the International Pelvic Pain Society and has “seen people from over 25 states in the US and from at least 5-6 other countries”, I’d say many are aware of his work and dedication in the area of chronic pain. Instead of writing more of Dr Echenberg’s achievements, I’d rather paste part of his wonderful, empathetic reply that arrived in my inbox. It gives me immense hope and reassurance for anyone with chronic pelvic pain, and provided me with great appreciation for my advocacy efforts.
I know you will be inspired to read more about Dr Echenberg’s work and feel the hope that I did when I received both his and Carin’s email.
…upon opening my messages just now your site, your book, your story… so much more light here in Pennsylvania even though it is almost midnight.
One of my main missions is to spread awareness and hope about the science and art of dealing with chronic pain and push hard for earlier diagnosis and integrative and effective therapeutic approaches in order to “prevent” the spiraling down of tens of millions of women and men just here alone in the US – the supposed bastion of medical technology. The training of health care practitioners everywhere in lower genital tract pain is almost nil. Several of my “projects” and involvements you can find at www.bridgeforpelvicpain.org which is a new non-profit out of Colorado whose mission is to raise world-wide awareness as a grass-roots organization to engender hope and education at all levels – and another active project is at www.paindownthere.com where a few of us have produced a soon to be released 2 DVD set designed for young women to learn properly about their bodies and give up to date information about ‘connecting the dots”
Thanks again for finding our site and offering your inspiring work.
Dr. Bob Echenberg
Member: International Pelvic Pain Society
Co-Author: “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships”
New research¹ shows six out of ten (59%) Australians who report living with neuropathic (nerve) pain are missing work at least once a week due to their nerve pain. Intriguingly, this is higher than those living with other chronic pain conditions such as osteoarthritis and rheumatoid arthritis (where 43% miss work at least once a week).
Pain Medicine Specialist Dr Nathan Taylor, of Sydney’s North Shore Private Hospital, explains how nerve pain is different to other forms of pain:
“Nerve pain affects many Australians. It is often described as being more severe than other pain and lasts longer than would be expected. Nerve pain feels different and is sometimes described as burning, stabbing, pins and needles, or the feeling of electric shocks. It can be associated with numbness or increased skin sensitivity.”
Celebrity chef Ben O’Donoghue shares his story of living with nerve pain as he becomes the ambassador of a new health awareness campaign called Share Your Pain, which launches today to coincide with the beginning of the Global Year Against Neuropathic Pain².
“Share Your Pain aims to increase understanding that nerve pain feels different,” Ben said. (more…)
Every two years the Congress boasts a hearty program composed of refresher courses, plenary lectures, topical workshops and symposia, and poster presentations. The Scientific Program Committee determines the content and an esteemed faculty of experts from around the world conducts the sessions. A Local Arrangements Committee works with the Congress Secretariat and IASP to present receptions, dinners, and other social events in keeping with the host city’s culture.
Purpose and Objectives of the Congress
The World Congress on Pain is designed to:
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.
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.
The 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
“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.
14th Nov 2014 to 15th Nov 2014
08.30 – 4.30
7th Nov 2014
Wyliie Arthritis Centre
17 Lemnos Street Shenton Park WA
About the venue
Lunch, morning and afternoon tea provided.
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).
On completion of the course the participant will be able to:
(Excerpt and bookings pudendalassociation.org)
Pudendal Neuralgia Conference
Hallelujah! Pardon my pun here, especially as I’m preaching sexuality on a Sunday morning but finally, here is some thorough research and attention for the clitoris. Thank you Louise Smith for sending this link to me.. I think it’s essential info for everyone, not just women with PN. Thank you melodiousmsm for writing this and thank you to artist and sex educator, Betty Dodson for the fabulous artwork.