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Pudendal Neuralgia Association, Inc

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(excerpt from www.pudendalassociation.org)

Who We Are

The Pudendal Neuralgia Association, Inc. was established in 2013 as a non-profit organization in the state of Massachussetts. We provide educational services to pudendal neuralgia patients and their families as well as medical personnel in English and in Spanish.

Our wish is to help improve the quality of life of pudendal neuralgia sufferers.

Members of The Executive Board

Dahri I. McFaline, M.Ed.Executive Director, President
MaryBeth Scalice, Ed.D. Coordinator of Psychospiritual Services
Andrea M. Kaubris – Clerk
Rosalyn Feliciano, M.A. IDET – Instructional Designer
Raena Avalon – Consultant
Maureen N. Strong, CPA – Treasurer

Board of Directors:

Kara Moylan MacLean, M.Ed.
Richard P. Marvel, MD
Jose R. McFaline-Figueroa, MD PhD
Jyotsna Nagda, MD
Mickey Nilsen
David Podolsky, JD
Clinton Michael Radenbaugh

Our Goals

  • Establish and maintain a telephone hotline to provide support for pudendal neuralgia sufferers seeking emotional guidance.
  • Identify appropriate resources to assist affected patients and their families in coping with their chronic pain, daily activities, emotional stress and financial burdens
  • Locate medical resources available in the vicinity of the affected patients’ community and facilitate their access.
  • Provide counseling services.
  • Educate patients in new ways to regain their individual and financial independence so that they may once again feel they are contributing members of society.
  • Facilitate training programs for medical personnel in the latest pain management treatments and surgical procedures for pudendal neuralgia and pudendal entrapment patients.
  • Establish a capital campaign to create aHope Centerto accommodate patients and their families who travel long distances for medical treatment.
  • Maintain online information about the latest treatments and medical procedures.Pudendal Neuralgia Association, Inc

Visual Pursuits book review on Art & Chronic Pain – A Self Portrait

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I’ve mentioned before I live in an art hub of Melbourne. I’ve also made it clear how much I love my community and how much the people living beside me have helped me manage my pain by energising me with their friendship, their creative work and some most distracting conversation.

These inspiring creatives (across all forms of art media), make me feel at ease, even as my painful-Soula-self. Whether in pain, feeling (or not) up to outings, when I appear leaning and sitting in all sorts of positions, and in some cases requiring their help to carry things home, or leave them behind for Theo to pick up later, I always feel accepted and loved, and that makes me so damn happy!

So, when one of those divine people, Marguerite Brown, reviews my book, I feel quite chuffed. In fact more than chuffed, honoured, that she spent her time to write a review in her own beautifully articulated words and publish it on her amazing blog, Visual Pursuits.

For anyone considering purchasing my book, or if you already have, I recommend Margue’s insight, it’s a brilliant review. Here’s a snippet:

In Art and Chronic Pain – A Self Portrait, artist Soula Mantalvanos shares her experience with chronic pain, which has been a debilitating presence in her life for almost seven years. Soula suffers from Pudendal Neuralgia, a painful nerve condition that developed following an accident where a fit ball that she was sitting on burst, causing her to drop violently to the concrete floor beneath.

Early on in the book Soula describes that split-second, and the devastating effects that followed. A highly active yoga-loving woman before the accident, throughout the book Soula gives a deeply personal account of the psychological, emotional and physical impacts of living with chronic pain for so many years.  These negative effects were compounded by the fact that her condition Pudendal Neuralgia baffled her doctors, and took four and a half years to even diagnose.

Soula weaves her story through a spare yet effective use of text, combined with evocative imagery that gives visual form to one of the most insidious aspects of chronic pain, its complete invisibility to the outside world.

To convey the loss of control over her physical being that has been presented by Pudendal Neuralgia, the artist commissioned a marionette in her own likeness by marionette maker Colleen Burke.  The result is an exquisitely crafted and hauntingly realistic version of herself in doll-like form. Soula paints, draws and collages representations of the marionette at various points throughout the book.

Read more…

Australian Pain Management Association (APMA)

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APMA LogoLiving with pain can be a miserable existence, but the Australian Pain Management Association (APMA) gives hope that with the right treatment and life skills, your pain will improve and you can enjoy life again. APMA is a non-profit organisation which supports the one in five Australians who live with persistent (chronic) pain. Their Pain Link helpline (1300 340 357) assists people all around Australia with information and options to help manage their pain.

APMA has launched a local pain-support group in Surrey Hills and they are inviting everyone in the community who lives with persistent pain to attend. The new pain-support group will base its program using  a new self-management strategy each month to teach people essential skills to manage their pain.

Meetings take place the 1st Monday of each month at the Holy Trinity Church located on 187 Union Road, Surrey Hills. APMA is a three minute walk from the train station and there is lots of parking right near the church.

There is also a facebook group if people need to chat.

Hayley and Marika are pain advocates and members of APMA and are available for communication on FB or you can call them directly:  Marika  0406450317 or Hayley 0457 172 090.

 

The book: Art & Chronic Pain – A Self Portrait

Author:
Art & Chronic Pain, A Self Portrait Book by Soula Mantalvanos

Art Chronic Pain Soula Mantalvanos-01

Yes, I’ve found another medium to express my pain and you can own your own copy of it!

I didn’t see the point of creating a long description of my living with pain, sharing my tips, turning journal entries into a pain story. Afterall, first and foremost, before the person in pain, I am an artist… so my book had to contain many pictures and few words, just 32 pages in fact, but I believe it’s a complete story. It doesn’t hold the solution for PN but it’ll allow you to explain it to someone else, leave it on the coffee table, and it will be light enough to carry around. Above all I created it to express my experience so far and so that it is a bit of a companion to another PN family member. The idea was for the reader to feel empathy in a world where no one seems to understand, and to ease the pain as you look through it. (more…)

My pain feels like…

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My Pain Feels LikeThis is a brilliant website! Have you ever been in so much pain you found it too hard to speak? Dumb question, of course you have, you’re on a PN website. Well the mypainfeelslike.com website includes a pain questionnaire where you can either select from relevant various answers people have entered about their pain or you can enter your own in order to get a printed report that you can take with you to an appointment. It’s a fabulous idea and that’s because it actually communicates modern day pain language, none of this ‘what is your pain on a scale of 1 to 10′ narrow minded business.

(excerpt from mypainfeelslike.com)

You can view, read and learn from patients with similar experiences. You may also like to use the ‘my pain questionnaire’ to record your symptoms and take a print-out of the results to your doctor appointment.

Your assessment will help your doctor to diagnose the reason for your pain and also provide advice on appropriate treatment options.
Select any of the stories below to learn more.

My pain feels like… has been developed by Grünenthal GmbH in collaboration wtih Montescano Pain School.

The latest pain definitions from Prof Lorimer Moseley

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Lorimer Moseley Presentations-03Lrg

Getting a grip on pain and the brain – Professor Lorimer Moseley – Successful Ageing Seminar 2013

Always great to hear the latest definitions and discoveries regarding pain from THE pain Professor, Lorimer Moseley.

It still stumps me however, to hear how ‘intelligent’ the brain is but yet how stupid its ‘brilliance’ is of learning pain tunes. In fact I’m not sure I’m stumped, I’d rather call it disbelief that all this horrific pain I’ve endured the past 6.5 years can be a tune… a learned behaviour. I certainly don’t dismiss the research and of course we’ll all be examples of different definitions of pain but in my tail’s tip, I believe my undiagnosed and unrecognised injury to my pudendal nerve injury, and the lack of treatment, has created a great wound that if not scarred will need its time to heal.

Yes, I pace up my activity (or is it better put that I juggle it well), but now that I am having appropriate treatment, I’m going to hold the thought that I may be nursing my wound towards healing. I am happy however, to let anyone who swears by ‘pain tunes’ to believe that I’m also slowly changing my brain’s pain signal and that the process is more about plasticity.

Whatever floats your boat I say, so long as it leads to cure.

Watch Lorimer’s presentation: (more…)

The Pelvic Pain Library

Author:
The Drawing Wall At Ooi

Here is my attempt to gather all references I’ve come across or that I refer to on my website for Chronic Pelvic Pain. Clearly nowhere near all the references that exist but at least one ‘library’ location with a bundle of great material (and one organised website!). If you’ve come across a resource that you think should be included, please contact me and if you are an author and have an update or other information to provide, I’d love to hear from you.

I know how frustrating it is to have to sift through pages and pages of the internet, I thought this could be of help to pain sufferers who simply don’t have the up time.

And a huge thanks to everyone who replied and supplied me their updated material. Obviously I plan for this page to grow and somehow I will keep it in some kind of legible order. Currently in alpha order by author and title of their publications, perhaps as it grows, we can list by subject. (more…)

The Secret World Of Pain

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Screen Shot 2013-10-01 at 6.52.23 PM

Viewable until 14 October, 2013.

A wonderful documentary available at SBS On Demand.

We experience pain from the moment we are born until our dying breath. We spend our lives trying to escape it, yet it is essential for our very survival. This documentary explores how genetics, the latest scanning techniques, virtual reality and hypnosis are helping us to unravel some of the mysteries behind pain. Find out why some feel more pain than others, meet the people who feel no pain at all and discover why our emotions and thoughts can influence our perception of pain. (From the UK) (Documentary).

John Quintner

Author:
John Quintner

John QuintnerI’ve made some great friends in cyber space throughout this PN pain journey (and developed quite a library along the way!). One friend I consider a favorite is John Quintner. He’s one of my most reliable sources when I need an honest opinion. We bump into each other over two main mutual ‘interests': the (primitive) WorkCover assessment methods, and pain definitions. John doesn’t just know what he’s talking about, he’s upfront, honest and calls it how he sees it. And when someone has these credentials, I’m all ears, not to mention I become much wiser!

John doesn’t have a website but he’s on facebook and you can find him around the social media pain traps. His publications and efforts within the pain world have been a plenty and although all of the following info isn’t specifically related to PN or PNE, I felt it was very relevant for readers. And yes, you do recall correctly that I had published, John Quintner’s Personal injury compensation: lessons from Talmudic law on my website a while back.

So without further ado, I present my friend, the great John Quintner and his incredible opinions:

John’s interest in pain was aroused in the mid-1980s when he had to try to make sense of what was then known as “RSI”. In collaboration with the late Robert Elvey, physiotherapist, he published an hypothesis, which has stood the test of time. He also published his work on “whiplash”. Since then, together with fellow rheumatologist Professor Milton Cohen, he has published extensively in the field of Pain Medicine. They have tackled such controversial topics as Fibromyalgia, Myofascial Pain Syndrome, as well as exploring the concepts of stigma, stereotyping and empathy in the context of chronic pain patients. Together with Dr Pamela Lyon, they have published a comprehensive hypothesis for Chronic Widespread Pain (Fibromyalgia). Their most recent paper addresses the question “Is Chronic Pain a Disease?”.

John’s publications:

An Evol Stress-Response Hypothesis for CWP. pdf
A book chapter from At the Edge of being: The Aporia of Pain. Published in 2012 by Interdisciplinary Press, Oxford. Editors: Heather McKenzie, John Quintner, Gillian Bendelow.pdf
Butler Medically Unexplained Symptoms pdf
Consumers in remote areas pdf
A critical evaluation of the trigger point phenomenon pdf
Drugs for Fibromyalgia: How Good Are They? National Pain Report website.
Evolution, Stress and Fibromyalgia pdf
Exploring the underpinnings of research pdf
Fibromyalgia falls foul of a fallacy pdf
Fibromyalgia Syndrome- a problem of tautology pdf
From Neuralgia to Peripheral Neuropathic Pain pdf
Is chronic pain a disease? pdf
journal.pone pdf
Maldynia as moral judgment pdf
Painful cervical radiculopathy pdf
Pain Med Models pdf
Preclinic group education pdf
Referred pain of peripheral nerve origin pdf
Signification & Pain pdf
Stretch-induced cervicobrachial pain syndrome pdf
System plasticity and integrated care pdf
The Australian RSI debate- stereotyping and medicine pdf
The horse is dead pdf
The medically unexplained revisited pdf
The RSI syndrome in historical perspective pdf
Whiplash study pdf

Jane Muirhead and easpain.com.au

Author:
Ease Pain Home Grab

Ease Pain Home Grab

I’ve mentioned many times that the cyber universe has been the reason for some brilliant introductions and friendships. Afterall, it’s a little tricky getting out and about physically when you have a health issue, but cyber communities still allow us to socialise and ultimately find a very empathic community.

Jane Muirhead, is an Occupational Therapist and Principal of Easpain. As a migraine and headache sufferer for many years herself, Jane understands what it is like to live with a long-term pain condition. She is committed to sharing the benefits she has received from positive lifestyle changes, including mindfulness meditation and gentle yoga with people who suffer from persistent pain conditions.

Excerpt from www.easpain.com.au

What We do

Treatment

For many people medication alone is not enough to really reduce the effects of persistent pain.   Any pain that has gone on longer than 3 – 6 months and is significantly interfering with your quality of life requires a broader approach.

That is why Easpain offers  a range of individual and group treatments, educational resources and products to help reduce the impact of chronic pain on individuals, their family, community and workplaces.

At Easpain we understand just how complex chronic pain is and will work with you to help you to make informed choices regarding your ongoing treatment and rehabilitation options.

This is all part of Easpain’s “whole person” oriented approach.

Reducing the Isolation

Feeling isolated and alone can be overwhelming for people who suffer with long term pain.

Easpain is committed to community education to raise awareness of the huge problem of chronic pain in our society.   Our aim is to educate health professionals, workplaces and the wider community about persistent pain conditions to reduce the stigma and sense of isolation experienced by so many.

Support

Because being able to communicate with other people who have experienced or really understand chronic pain conditions can be such a relief, Easpain also aims to help people in pain to connect to others through support groups and other networking opportunities in Australia and further afield.

Sharing the Knowledge

We know that increased knowledge of your condition leads to greater empowerment.  So Easpain is also about sharing the latest research and uplifting stories from around the world about the best practices and new advances in treating and managing persistent pain conditions. (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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