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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. (more…)

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…)

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. (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…)

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…)

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! (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…)

Robert J. Echenberg, MD

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Dr Echenberg http://www.instituteforwomeninpain.comI 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.

Sincerely,

Dr. Bob Echenberg
Member:  International Pelvic Pain Society
Co-Author: “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships
www.instituteforwomeninpain.org

Dr Echenberg http://www.instituteforwomeninpain.comOffice phone:  610-868-0104
paindownthere.com/
www.facebook.com/Paindownthere
twitter.com/painfulsex
instagram.com/paindownthere

Bridge for Pelvic PainCarin E. Willis
Founder & Executive Director, Bridge for Pelvic Pain
Skype/Phone number: 719.445.7040
www.bridgeforpelvicpain.org
Facebook: Bridge for Pelvic Pain
Twitter: pelvicpainB4PP

National campaign: nerve pain is different

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New research reveals nerve pain affects the productivity and wellbeing of Australians


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…)

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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.

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