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‘Ouch’ just doesn’t cut it!

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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…)

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.

Signing off for 2014 under an Olsen sun at MONA

Author:

Soula At Mona John Olsen PainitngOr should I say, looking forward to 2015?

Looking forward is more my tune but the changeover of another year, especially with chronic pain, calls me to reflect and to ponder my future.

It’s been three gorgeous months in nurturing Tasmania where I’ve eased my work load, upped my fine art a little, and squished obligations to almost zilch (bliss!). The year will end and sadly I haven’t been able to incorporate driving into my abilities, nor a consistent and regular exercise routine, and Theo is still carrying much of our daily living load… but…

…as I keep stating, finding life balance with chronic pain is really very difficult and I believe ‘we’ are doing very well, yes it takes the two of us, Theo and I.

I’ve stopped my medication and thankfully that rid the night-time hallucinations. Although dainty, my fort has been held without meds, monthly massages and Traditional Chinese Therapy – for this I give huge thanks to the implant in my body.

Indeed the Sun is beginning to shine down on me, and yes, I will certainly be marking the months of this Tasmanian trial period in my spirit’s fashion with a small solo exhibition. I’m working on self-portraits that will exhibit at Penny Contemporary in Hobart. Here’s your diary date: Opens March 6 until March 25. If you want to follow this artistic endeavour, subscribe here.

There’s so much more I could write, but I’m going to keep this light and hopeful and keep my bigger news to kick off the new year…

Signing off now… sending love, health, happiness and the warmest of hopes for pain relief to those of you who need it.

Soula

Painting by John Olsen, The Source on the ceiling at MONA

Melbourne Leader story, Soula bares soul over pain

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The following story was published in support of the current National campaign: Nerve Pain is Different. Please help us raise awareness for those with debilitating invisible pain.

If you think you have nerve pain, talk to your doctor and visit www.nervepain.com.au. Complete the online questionnaire intended to help you explain your pain and take a printout to discuss with your doctor.

Melbourne Leader Mon 1 Dec

Resident shares story of coping with daily agony following fit ball accident

By Nic Price for the Melbourne Leader

SOULA Mantalvanos’ life was up-ended in 2007 when a fit ball she was sitting on burst and she dropped to the concrete floor.

She didn’t think much of it at the time and tried to continue her routine of yoga four times a week and regular walks, but that soon became impossible.

Dealing with chronic pain that made her feel like her “finger was stuck in a power point”, the Collingwood resident was not diagnosed until four-and-a-half years later with severe pudendal neuralgia nerve pain.

As she embarked on a journey of living with pain, Ms Mantalvanos and her husband turned their lives upside down in an attempt to find a better quality of life.

They closed their graphic design studio down (Ms Mantalvanos now works part- time) and even removed doors in their house so she wouldn’t have to open and close them.

“I’ve learned not to lift more than a few kilos, to sit a lot, get in the car a lot,” Ms Mantalvanos said. (more…)

My interview with the Australian Pain Society

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APS Pain Recovery JourneyA pain recovery journey shared

(Excerpt from Australian Pain Society’s blog. Read the full interview here)

We recently had the opportunity to interview Soula and gain her valuable insights.
We hope you enjoy this blog post and possibly find some useful tips.

APS: Would you describe your pain recovery journey as having a ‘turning point’?

Soula:     There have been a few turning points but two main ones:

  • Firstly when I was implanted with a peripheral stimulation device which restored my ability to read with the much lower pain levels.
  • That led, shortly after, to my diagnosis which has been the key to my recovery.

APS: What 3 things would you rate as your biggest lessons in your pain recovery journey?

Soula:

  1. Firstly that my body is first and foremost driving recovery, it just needed the help of appropriate treatment. I initially presumed it was the other way around.
  2. That everyone needs a decent explanation of what is causing their pain before they can move on with recovery. In my case that was: the pudendal nerve lives in various levels of an overactive inflammatory state. The why’s, what’s and how’s are secondary information and unique to each person and we may actually never get those answers.
  3. That my lifestyle: Theo (husband) and creativity have been my biggest treatments of all.

(more…)

Committment, sacrifice and granting myself the right permissions

Author:

Soula In TassieLast week, I attended my last acupuncture appointment and for the first time in over seven years, am therapist free. Hang on, I have to just repeat that:

I am therapist free

Did I ever think this day would come? Of course I did and I believe that’s why I am here.

I have had my moments, but what I didn’t realise through all that heat and whilst pacing like a snail, was that each flare up and pain episode was actually not an indication that pain was here to stay, but rather that it was actually beginning to leave. Although just a difference of minutes initially, eventually I felt the flare ups spreading further apart. And with recognising that change and NOT increasing my capacity past a snail’s shell weight, I began to make progress. (more…)

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…)

Cathartic collage, my self portraits for sale

Author:

For sale… well, all except for one… actually, two.

Collage has been a little more therapeutic for me than my usual art forms. I think it must have been finding a technique that I could manage and one that didn’t add to the fatigue and pain. Cutting small pieces of paper and glueing, drawing, attaching was just so light and easy. The painting of small pieces of paper and the careful ripping and tearing was like rocking. So gentle, so calming and at the same time feeling like I was handling my pain, expressing it and getting it out of my body and onto the art piece.

It must have worked, my progress continues and even though it’s very slow I’m ecstatic to know I can plan more artwork. I am creating again, I am my self.

One of the two pieces not for sale (and that is not shown here), is the original piece that I used on the cover of my book. Each of the 500 dust cover jackets comes with four strings attached by hand and is my offering as an original hand touched piece of art by me (well actually Theo had to attach them all!). The book is $39 plus postage.

Contact me if you want to purchase my artwork, these are the original pieces, no printouts will be sold. Paypal or Direct deposit available. Will post safely and securely free within Australia (plus postage outside of Australia).

Collage 6 (detail). Self Portrait. 360 mm x 500mm. Pencil, collage (pages from Frida Kahlo novel & strings attached) on Khadi paper. NFS. © Soula Mantalvanos
Collage 4. Self Portrait. 400 mm x 500mm. Oil, collage (pages from my book Art & Chronic Pain & strings attached). $780. © Soula Mantalvanos
Collage 6. Self Portrait. 360 mm x 500mm. Pencil, collage (pages from Frida Kahlo novel & strings attached) on Khadi paper. NFS. © Soula Mantalvanos
Collage 2. Self Portrait. 360 mm x 500mm. Oil, collage (pages from my book Art & Chronic Pain, my personal prescriptions & strings attached) on Khadi paper. $780. © Soula Mantalvanos
Squelette. Self Portrait. 360 mm x 500mm. Oil, collage (pages from my book Art & Chronic Pain, my personal prescriptions & strings attached) on Khadi paper. $780. ©Soula Mantalvanos
Collage 5. Self Portrait. 360 mm x 500mm. Oil, collage (pages from Frida Kahlo novel, my book Art & Chronic Pain & strings attached) on Khadi paper. $780. © Soula Mantalvanos

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

Author:
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.

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