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‘Ouch’ just doesn’t cut it!

Author:

I-feel-so-frustratedAnd neither does repeating, ‘it burns’, ‘it itches’, ‘it’s like fire’, ‘I get spasms’, or the various other words people in pain have to repeat for each consult in the effort to be understood.

Pain Train’s whole purpose is to help patients and their pain management teams communicate beyond these basic words. Pain Train saves the patient the additional pain of having to repeat their history and other related details at each appointment.

Pain Train offers patients a way to also show their friends and family their profiles in the hope they can also better understand their loved one’s experience. (more…)

Pain Train – Communicating chronic pain from the patient’s platform

Author:

All aboard!

It’s true that each of our pain journeys are unique. I must have been asked the following questions at least a gazillion times during my own pain journey:

How did the chronic pain begin, what investigations have you had, did you bring any reports with you, what kind of pain treatments have you tried, how long have you had chronic pain, which Health Care Professionals (HCPs) have you seen, have you taken any pain medication…?

Pain-Train_Jan2_1000pxAnd, I will never forget struggling to answer. That is if I was able to answer due to my fatigue, extreme pain levels, or dulling effects due to pain medication.

So how can a HCP begin to gather the best possible understand of each of their patients unique pain journeys? And how do patients navigate their search for diagnosis and treatment as best they can?

Stand clear… Pain Train is approaching

(more…)

Robert J. Echenberg, MD

Author:

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

Yoga for Pain via Skype

Author:
Rachael West(Excerpt from findingyoga.com.au

Rachael West is a yoga teacher, facilitator and educator.

She is an accredited yoga teacher with Yoga Australia with roots in the Krishnamacharya lineage and in 2011 completed a University Diploma in Yogic Education (University of Lille, France) with first class honours.

As the only Australian to study this specialist practice area, Rachael is able to work in a unique space in health care: allowing each person to understand what wellness means to them and to develop the practices that will get them there.

Rachael has also graduated from a Circus in Performance qualification with Greentop Circus in Sheffield, England. Prior to that, she obtained a Bachelor of Civil Engineering (Curtin University, Australia) with first class honours and worked as a civil engineer and facilitator in the public and third sectors.

She is credited with creating the first Gentle Yoga for Fibromyalgia program in WA, allowing sufferers of chronic illness and persistent pain to gently resume exercise, manage the stress of their condition and build confidence in their bodies. The program is allowing them to re-discover their relationship with their bodies.

Changing how we feel about our bodies when they hurt

The Yoga for Pain program is available in person or online and helps those with Fibromyalgia, Chronic Fatigue and persistent pain return to gentle exercise safely, manage the stress of their condition and feel confident about using their bodies.

With a special focus on body awareness and effortless movement, Yoga for Pain is helping people to reconnect with their bodies and change their relationship with pain. (more…)

Pudendal Neuralgia Association, Inc

Author:
(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

A new workers compensation programme in South Australia

Author:

RosemaryI met Rosemary McKenzie-Ferguson advocating an online forum for injured workers. She spoke in a way I’d never heard before, she spoke to me about support, empathy and trust, the ways an injured worker never experiences (I’m vouching for the Victoria’s system).

I’ve since had the pleasure of meeting Rosemary and we’ve become great friends. She’ll be in my life as long as we both live and anyone that has the pleasure of meeting her will say the same.

Rosemary’s efforts to help injured workers have been endless, not to mention exhausting since she’s trying to teach our Australian Government a language they don’t understand. I’m so happy to be able to include this post on my website and hope that it is the beginning of a new global, not just national, workers compensation scheme. Afterall, injured workers simply want to get better and back to work and this is something Rosemary believes and knows how to drive.

I have to warn any injured workers before reading the following, you’ll be left astounded and wondering if you’re in some backward and warped world. You’re about to read the very opposite of what you experience in the current workers compensation system. It’s quite shocking.

If you are in South Australia and are an injured worker, you can seek help from Rosemary’s Bags of Love program. Contact details below.

Craig’s Table

(excerpt by Rosemary)

Craig’s Table is very unique within the world of workers compensation, it is a 40 week community based training programme and community based work placement programme that invites employers in at every stage to see just what is going on and for the first time actually engages injured workers from point of injury to engage in meaningful and supportive engagement/employment that will provide real outcomes for injured workers instead of the current concept of churning injured workers to generate income for the provider but little to no outcome for injured workers.
Craig’s Table will for the first time actually set a benchmark standard so that in the future employers will be able to see that there is nothing to be concerned about in regard to employing an injured worker because the injured worker will be able to show that they have maintained their work ethic and gained very valuable skill sets along the way.

Craig’s Table is as you can see by the attached document not just a training programme, but a life skills training programme, it encompasses leadership training, financial training (the financial training is actually both a personal financial training course and a lead in training course for those who want to enter the world of finance) and ways to not just return to work, but skills required to gain different employment if that is required. There is also the basics of first aid, suicide prevention, food handling, manual handling and fire control.
The training component is (depending on each person) around 12 weeks in length –a lot of it is computer based, though there is also requirements for attending set components.
Each part of the training component will lead into the next stage working within the community based employment/engagement with people being able to opt into a section that is of interest to them.

What we promise is that injured workers will have a minimum of 40 weeks with Craig’s Table, we also accept that some injured workers will leave before the 40 weeks is up and that some injured workers may never leave as they will not be able to regain enough medical clearance capacity hours to move on.

The downside to all of this is that until there is enough funding to start Craig’s Table the project will sit on my desk.
The upside of this is that there is non-workers compensation people interested in setting the community garden and the commercial kitchen in place with plans being worked on and written up.

Craig’s Table has many layers to it, it is envisaged that the number of long-term claimants will drop simply because injured workers will not be isolated as they are now so the secondary depression will not have time to take hold, it is also believed by the workers compensation industry people here in Australia who have seen the concept that the amount of legal disputes will also drop, again because the injured workers will have access to a new set of information and be trained to control their own workers compensation claim rather than allow the legal people to take control. I am in talks with a colleague to be able to use the medical forms that he and a collection of others have written that will actually put real information in place so as injured workers will no longer be ignored or not listened to in the myriad of appointments that the workers compensation systems want them to attend.

Read more about Rosemary’s work at wirc.net.au
Rosmeary’s bio
Craig’s Table overview

P.O. Box 12, Welland
South Australia 5007
Phone: 08 8255 9138
Email: reception@wirc.net.au

Beyond Basics Physical Therapy

Author:

(Excerpt from the beyondbasicspt.wordpress.com blog)

amy steinAmy Stein is the founder and a practitioner of Beyond Basics Physical Therapy in NYC, specializing in pelvic floor dysfunction, pelvic pain, women’s health, and manual therapy for men, women, and children while taking a holistic approach to each patient’s entire well-being. She is the author of Heal Pelvic Pain, an easy-read, self-help book. Amy is also a contributor to the medical textbook, Female Sexual Pain Disorders: Evaluation and Management, and serves on the board of the International Pelvic Pain Society, since 2007. She is a well recognized expert in her field, lectures nationwide, and has been interviewed in media outlets ranging from the medical segments of popular TV news shows, like ABC’s 20/20 to such newspapers as the New York Daily News to internet sites like http://www.ourgyn.com. She is also an editor of painchannel.com and a member of the NVA, ICA, as well as many other organizations. Amy received her Masters in Physical Therapy from Nova Southeastern University and is currently working towards her Doctorate in Physical Therapy.

Beyond Basics Physical Therapy, located conveniently in Midtown Manhattan on 46th street between 6th and 7th Avenue, has been committed to providing integrated and individualized rehabilitation since 2003. Our highly specialized staff provides comprehensive care to patients with a variety of pelvic pain and orthopedic conditions. (more…)

Back to yoga, thanks to Dustienne Miller’s, Your Pace Yoga

Author:

Dustienne MillerThis is truly a thrilling post for me to finally be writing. I used to practise yoga 4 mornings a week for at least 45 minutes pre injury. After my warm up poses, my spine unravelling was eight minutes in shoulder stand, followed by another eight minutes in plough pose before Savasana (rest). So you can imagine how many times I’ve tried to get back to my yoga since knowing the benefits. i was always unsuccessful until I came across Dustienne’s Your Pace Yoga dvd. I still can’t work out what’s different, of course I’ve made progress but that can’t be the answer as it wasn’t so long ago I attempted cat/cow pose only to begin flaring. I’d say Dustienne’s sequence and breathing is definitely focused on opening, lengthening and creating space in the pelvis, it just feels great and I’m happy to report I’ve managed it once a week for over a month now. I know that’s not huge, but I’m blowing my trumpets that I could sustain one of the routines. I hope to get to both but my struggle lying on my back may prevent me.

Regardless, I don’t plug a lot on my website but I thought this was worth it as everyone can try it at their own pace and there’s just something about Dustienne that is authentic and really calming, not to mention she knows her pelvis! Here’s some more info: (more…)

Australian Pain Management Association (APMA)

Author:

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.

 

My pain feels like…

Author:

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.

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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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