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Dr Susie Gronski – How One Artist Used Her Hurting Strings To Stitch Back Her Life

She’s also the author of our newest blog post – How One Artist Used Her Hurting Strings To Stitch Back Her Life.

Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers. She’s created an online communication tool called Pain Train to help those suffering from pelvic pain feel confident and empowered in managing their own pain journey. Continue reading “Dr Susie Gronski – How One Artist Used Her Hurting Strings To Stitch Back Her Life”

Encouraging Self Management

(Written by Soula Mantalvanos, Founder Pain Train)

That’s easier said than done.

When I first had my accident in 2007 and literally landed in chronic pain, the last thing I expected to hear at any appointment was that I had to manage and coordinate my own treatment.

It was confusing when I was asked what treatment I thought would be best for me to try next – wasn’t the professional meant to guide me?

But a decade later I now finally realise that I was driving my pain management and it was in fact my direction and feedback – from my unique pain experience that was making the difference.

Without the patient reporting their exact experience – which we now know is unique – there’s no way to plan or move forward.

I can’t imagine the complexity a professional faces when trying to help a patient who is unable to articulate their pain experience. But I know this is the general scenario and I know this because I experienced the difficulty of remembering, talking, thinking, documenting, reporting and navigating each minute while living with chronic pain. Continue reading “Encouraging Self Management”

Our founder’s story on Mamamia

(Excerpt from Mamamia.com.au story by Caitlin Bishop)

It’s time we talk about the addiction killing more Australians than heroin and ice combined.

Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.

“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia. 

Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes. Continue reading “Our founder’s story on Mamamia”

PainTips.org

Pain Train is ecstatic to be included on the paintips.org website in the news section. Thank you Pete!

Pete Moore has made an astounding contribution to pain management.

(Excerpt from www.paintips.org)
Pete’s story is very typical of others. He got trapped in the medical model of care because of a back problem. In 1996 he attended a Pain Management Programme (PMP) called *INPUT at St Thomas’ Hospital in London. The PMP gave Pete the confidence, skills and tools to self-manage his back pain. Continue reading “PainTips.org”

Pain Australia newsletter – Get on Board the Pain Train

(Article from the Pain Australia October 2016 newsletter)

Soula Mantalvanos knows a lot about living with pain—and the frustrations of retelling her story to every new doctor and health professional.

Hoping to make the journey easier, she developed {Pain}Train, an online platform where patients can record and store personal pain-related information, as well as upload reports and test results.

Patients can then share their profile with medical practitioners prior to a consultation, and even check if it has been viewed. They can also revoke access.

“{Pain}Train allows patients to communicate their history without carrying an enormous paper file with them,” said Soula, who has been living with pelvic pain for almost 10 years.

“Like many with chronic pain, I’ve been asked the same questions a lot over the years: how did the pain begin, what investigations have you had, did you bring any reports, and questions about treatments, medications and other therapists.

“Severe pain, fatigue and the influence of strong painkillers, can affect a person’s ability to provide an accurate picture of their pain experience.” Continue reading “Pain Australia newsletter – Get on Board the Pain Train”

This Train is Bound For… Wholeville: A Travel Guide for the Perplexed

Conceived and written by John Quintner and Melanie Galbraith for Arthritis and Osteoporosis WA as our contribution to the Consumer Education Sub-group, WA Pain Health.

So you have decided to board our train. We are pleased to offer you some advice along the way to help make your long journey more informative and understandable.

Here is the route this train will take. Continue reading “This Train is Bound For… Wholeville: A Travel Guide for the Perplexed”

How did {Pain}Train originate?

{pain}train logoIt’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…?

And, 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?pt-journey

In no way is {Pain}Train an assessment tool. As all HCPs know the consultation process itself is of major importance in forming a therapeutic relationship. {Pain}Train is here to help the patient with communication and to document their journey. {Pain}Train creates a private profile that is accessible 24/7 with patient permission. Continue reading “How did {Pain}Train originate?”