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Yes, it is like taming a beast

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You’ve all heard the impact Prof Lorimer Moseley made on my pain journey – well my diagnosis actually.

If it weren’t for him I wonder how much longer I would have been left searching for the reason behind (pardon the pun) the pain. It took 4.5 years!

Lorimer’s research continues and this time he’s teamed up with some fabulous physiotherapists to make a lighthearted – but still serious, animation about chronic pain.

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Not the fitball’s fault – it’s Nav1.7’s

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How a Single Gene Could Become a Volume Knob for Pain

(Excerpt from How a Single Gene Could Become a Volume Knob for Human Suffering by Erika Hayasaki | art by Sean Freeman 04.18.17 on Wired)

…When Stephen Waxman was a student at the Albert Einstein College of Medicine in the early 1970s, he became interested in painhow people feel it, how the body transmits it, and how, as a future neurologist, he could learn to control it. Later in his career, after his father was in the final stages of agonizing diabetic neuropathy, he became obsessed with helping patients like his dad, who could find no relief from their pain. “We simply had to do better,” he says. 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.

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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

Arthritis & Osteoporosis WA, Making Sense of Pain June 26 – 27, 2015

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Calling all Health Professionals
“MAKING SENSE OF PAIN”
Our fourth inter-disciplinary workshop

Register now.
Early bird registrations close on 12th June!

Presenters & RegistrantsWe offer health professionals a unique opportunity to update their knowledge and skills and to effectively transfer them into their clinical practice setting.

Our experienced team, which comprises “pain champions” together with experienced clinicians and researchers, present a unique learning experience conducted in a user-friendly environment.

Date: Friday 26th – Saturday 27th June, 2015.

Presenters: Ms Melanie Galbraith (Physiotherapist), Assoc-Professor Vance Locke (Academic Psychologist), Ms Jane Muirhead (Occupational Therapist), Dr John Quintner (Physician in Rheumatology and Pain Medicine), Ms Mary Roberts (Clinical Psychologist).

Pain champions: to be announced

Venue: Wyllie Arthritis Centre, 17 Lemnos St. SHENTON PARK WA

[N.B. This workshop is fully catered and FREE on-site parking is available.]

For details and to Register or contact:
Melanie Galbraith, MelanieG@arthritiswa.org.au or
John Quintner, jqu33431@bigpond.net.au

View information about previous workshops

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

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

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Who would have thought that pain and the design process would have found a way to merge in my life. Design is however all about communication, and being a creative communicator I got wondering about how one can document their pain journey.

I also believe from my experience with chronic pain that the area is poorly provided when it comes to expression and language. How is it possible for a patient to describe their situation when their situation has no current definition or current way to be described?

So I thought of a concept! I called it Pain Train and two wonderful things were conceived from it. My soon to be publicised online resource, and a brilliant research paper by John Quintner and Melanie Galbraith.

Pain professionals, John and Melanie, are Pain Train’s first conductors and they have applied their exceptional chronic pain knowledge to the concept with their research paper, This Train is Bound for… Wholeville: A Travel Guide for the Perplexed (download or read below).

John Quintner and Melanie Galbraith are aiming to give people in pain sufficient knowledge so that they can meaningfully engage with their respective health care professionals.This-Train-is-Bound-For-Wholeville

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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.

What do I do with my trigger points now, Dr Quintner?

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John Quintner, Professor Milton Cohen and Dr Geoffrey Bove recently published a very controversial review – A critical evaluation of the trigger point phenomenon. Their article aims to show the hypothesis – “Myofascial Pain arising from Trigger Points” – formulated in the 1980s by Travell and Simons, is ‘flawed both in reasoning and in science’.

Being closely aquainted to John (albeit via cyberspace), I sought a patient’s explanation. What does this mean for me and others with chronic pain erroneously attributed to myofascial trigger points?

How many years have you been practising and researching chronic pain?

I commenced my career in rheumatology in 1975. My interest in chronic pain dates from 1985, when I admitted to myself that I had no idea about what was then being called “RSI”. Without a research background I was left with no other option but to learn “on the job”. I remember that some of my rheumatology colleagues would laugh at those of us who were making a serious effort to understand these conditions. But these were extraordinary times when a fierce debate over the validity of “RSI” as a compensable condition was raging across Australia.

Do you believe pain will be explained one day?

The short answer is NO. Attempting to explain the experience of pain is inextricably linked to our inability to explain consciousness. You could ask if we will ever explain LOVE and I would give you the same answer.

What might your research mean for someone with chronic pain?

Along with those with whom I have collaborated, and the list includes Professor Milton Cohen, Mr Robert Elvey and Dr Geoffrey Bove, my research has been aimed at shining the torch of critical scientific inquiry upon a number of complex and poorly understood conditions. From our attempts to do so, I hope that in some small way we have helped people in chronic pain to avoid the stigma that is so often conferred upon them by members of our society, including their well-meaning medical and other health professionals. 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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