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Takes more than an app to explain pain

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Body in Mind posted this excellent research from Marina Pinheiro and Gustavo Machado about the abundant health apps out there; What App is Good for My Back?

Pulse+IT also recently posted their story, There’s a bad app for That.

There are various purposes health apps are made. From where I’m standing, my app was never a promise to solve a health problem – that’s impossible.

I’ve been asked many times why Pain Train isn’t available as an app. Pain Train currently is fully functional as a website on any desktop or hand-held device.

The two main agendas of Pain Train, are: Continue Reading

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. Continue Reading

Pain Down There online resource

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Stephanie-Yeager-screen

You might recall me plugging the Pain Down There DVD – an extensive resource for women created by Robert Echenberg, Karen Liberi, Alexandra Milspaw, and Stephanie Yeager.

Now the team have taken this a step further, turning the DVD into an online, supported program.

The idea is to offer support and pain management in small groups of 10 – 15 women who start the program at the same time. The video content is released to them online and they also get to meet as a group online with Stephanie as their personal health coach. Individually they have the option to meet with the doctor and PT – all via video conferencing.

Finally! Continue Reading

Encouraging Self Management

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(Written by me, the founder of {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

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. Continue Reading

Retrainpain.org

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It’s finally filtering through my brain: It’s going to be VERY hard work most days and it’s up to me to keep my butt in gear and stay on the treatment and management trail.

You’ll all be getting sick of reading my badger about this, but the research is out. Patient experiences have been in the making (for decades now), and the biggest sign that the hard work is cut out for people with chronic pain comes from the many who are now drug dependent with either increasing levels of pain or who sadly have lost their lives – not from the medication – but from the battle.

I get sick of filtering through paragraphs and words and med talk that I don’t quite understand (not to mention the pain levels soar for some peculiar reason) and as an artist, I still find it really difficult to present my pain experience to my readers, family and friends in a simple form.

Continue Reading

A new DVD resource, Healing the Pain ‘Down There’: A Guide for Females with Persistent Genital and Sexual Pain

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There have been many times during my years of chronic pain where I wondered, ‘Why didn’t I know that?’. Usually, the information is quite basic and I feel as though I’ve been deprived by never knowing something so crucial and important about my own body.

I was asked to view and give feedback before this thorough resource was released, and a few times, throughout the 284 minutes of run time, I asked myself, ‘Why didn’t I know that?’.

This DVD isn’t just about managing pain, but rather a clear and concise  resource for females… It should be put on some International educational agenda. Continue Reading

‘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. Continue Reading

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?! Continue Reading

An Integrated Approach to Pelvic Pain

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Interview with Robert J. Echenberg, medical advisory board ICA.

ICAUpdate-(2015-Spring)Echenberg-1Dr. Robert J. Echenberg is the founder of the Echenberg Institute for Pelvic and Sexual Pain in Bethlehem, Pennsylvania. Previously known as the Institute for Women in Pain, Dr. Echenberg’s practice is one of the first privately owned multi-disciplinary practices exclusively specializing in assessment, diagnosis, and treatment of chronic pelvic pain (CPP). Since its inception in 2006, the Institute has treated more than 1,200 women and a growing number of men with pelvic and sexual pain disorders from 25 states and five countries.

A member of ICA’s Medical Advisory Board, Dr. Echenberg is the author of the book Secret Suffering: How Women’s Pelvic and Sexual Pain Affects Their Relationships. Dr. Echenberg spoke with ICA Update about IC and overlapping conditions, why education must come before medication, and ways in which the medical system must change to address the needs of patients with overlapping chronic inflammatory and pain conditions.

An Integrated Approach to Pelvic Pain was published in the current edition of the ICA Update.

The Interstitial Cystitis Association (ICA) is the only nonprofit association dedicated solely to improving the quality of healthcare and lives of people living with interstitial cystitis (IC).

Interview—Mark Toner
Mark Toner is editor of ICA Update

Talk about how IC fits into the variety of overlapping conditions you treat.

I started this program in 2001 when asked to develop a nonsurgical approach to female pelvic pain through our  department of obstetrics and gynecology. We knew that all over the country young women were receiving multiple invasive diagnostic and therapeutic procedures for persistent and otherwise unexplained painful symptoms in the pelvic region (between the belly button and mid thigh). I found early on that IC was a cornerstone, if not one of the most common triggers of pelvic pain.

There’s a huge spectrum of pelvic pain patients, both male and female. Many conditions within the pelvic organs such as IC, endometriosis, and IBS are common organ or visceral generators of pain within the pelvis, but what I soon realized is that we were generally not even thinking of all the muscles, ligaments, and nerves that almost always contribute to the pain itself.

Much of the literature and my own experience since 2001 points to bladder pain syndromes being at least part of the picture of chronic pelvic, genital, and sexual pain about 80 to 85 percent of the time. That’s a huge number, and chronic pelvic pain translates into tens of millions of individuals in the U.S. alone. Not only are multiple parts of the anatomic pelvis involved in persistent painful pelvic symptoms, but there are also many overlapping inflammatory issues and other pain syndromes commonly associated with CPP. These include migraine, fibromyalgia, TMJ, multiple chemical sensitivity syndrome, all the autoimmune disorders, and others. IC patients are among large numbers of people suffering not only pain, but also fatigue, sleep disorders, hypersensitivities, allergies, and other slowly disabling illnesses that plague our health care system. Continue Reading

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Definitions of pain

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 aggravated 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.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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