The Australian RSD/CRPS Support Group
"Fighting Pain Together"

While I will update these articles, I will be leaving those that i find, or your comments say you have found, to be of greater interest.



There is increasing interest in chronic pain research by young researchers, this is good news for the future of Australia, and highlights the profile that chronic pain now has in our scientific community.  Also, Chronic Pain is gaining more interest with the press so there are more articles and television reports on the issues.  Where in the past we saw the occasional item when a new drug was being tested - typically to never hear of that drug again, now the journalists are looking more at individuals and how Chronic Pain affects their lives.  This is very good news for those who suffer, as the general public is becoming more aware that Pain can indeed be a condition in itself, and not just a symptom of something else.  The more awareness there is the more understanding we will have of our condition.


I have been involved in a Research Project aimed at obtaining a better understanding of Opioid use for  Chronic Pain in Australia, for about 12 months now.  There isn’t a lot involved, on my part, and once finished the results will be able to offer a more accurate picture of the use of this form of medication.  If you are taking Opioids for your RSD/CRPS and would like to know more, or get involved just contact them, they would love to hear from you, and can answer all your questions.



POINT Study (Pain and Opioids IN Treatment)


Date Commenced: 01/2012

Expected Date of Completion: 12/2016

Project Supporters: National Health & Medical Research Council

Drug Type: Opioids

Project Main Description

There has been a recent increase in the prescribing of pharmaceutical opioids in Australia which has lead to increasing professional and public concern about the use and harms that may be related to such use. Despite this, there is very little known about the magnitude of risk for adverse events. Previous Australian research has had limited duration (~ 12 weeks) and/or have not examined aberrant drug use behaviours. This current study is to be the first Australian study to examine the patterns of prescribing for individual patients, and the outcomes for these patients in the longer term.




1. To examine the rates, patterns and duration of opioid analgesic prescribing at across Australia

2. To estimate the population-level risk of adverse events among those prescribed opioids, including incidence of hospital stays, transfer to opioid substitution treatment, and mortality

3. To examine the natural history of opioid analgesic use in a cohort of patients prescribed opioids for chronic non-cancer pain (CNCP)

4. To examine the demographic and clinical predictors of adverse events among a cohort of CNCP patients, including opioid abuse or dependence, medication diversion, other drug use, and overdose

5. To identify factors which predict poor self-reported pain relief and other indicators of clinical outcomes.


Design and Method

The POINT study is a national prospective cohort that aims to follow 2000 chronic pain patients newly prescribed pharmaceutical opioids over a 24 month period. Follow-ups will occur at three months, 12 months and 24 months. The interviews will cover topics such as; demographics, chronic pain, treatment, physical and mental health, physical functioning, social support and current and lifetime substance use. Participants will be recruited through pharmacies throughout Australia. We will continue to follow patients that discontinue their pharmaceutical opioid in order to examine reasons and effects of discontinuance. 



This project will be the first large-scale Australian prospective cohort study to rigorously examine opioid analgesic prescribing patterns amongst chronic pain patients at a population level, and their relationship to important health outcomes and to mortality. This study will be the first to comprehensively examine the extent, to which opioid therapy for chronic pain is associated with pain reduction, adverse events including side effects, quality of life, and mental and physical health outcomes.

The study will shed light on the extent to which patients experience problematic opioid use, some of the precursors and protective factors to problematic use, and the consequences of problematic opioid use resulting from chronic opioid therapy. It will lead to improved knowledge of dose escalation and the positive and negative outcomes for those who undergo rapid dose escalation and ultimately end up using high doses of opioid analgesics.

Currently, the evidence base for the regulation and monitoring of opioid analgesics is weak. Regulators across jurisdictions currently use different criteria for authorising long-term opioid therapy, and different criteria for identifying at-risk patients. The results of this study will assist doctors and regulators in Australia to better identify those patients who are at risk of adverse outcomes and who therefore require alternative treatment strategies. Improved understanding of the longer-term outcomes of chronic opioid therapy will direct community-based interventions and health policy in Australia.

Finally, the project will achieve the establishment of a cohort of Australians with chronic health problems. The project will provide the groundwork for further follow-up of the sample to determine the longer-term outcomes for chronic pain patients.


If you are interested in taking part in this study simply contact them:

Email the National Drug and Alcohol Research Centre (NDARC) [email protected]

Phone—02 9385 0333,

or write to them 


University of New South Wales,




CRPS Members list of the 40 worst things people say to us about

Chronic Pain


Oh, are you all better now?
How are you?
You still have a headache........really??
You need to toughen up and live with it.
You've still got back pain? For goodness sake put it all behind you
What do you do all day?
I’m putting you in the pain program, it’s all day 5 days a week for 6 weeks
What have you got planned for the weekend?
You look good you must be feeling better.
It could be worse
Does it really hurt all the time?
Stop thinking about your pain so much, you're just making it worse.
It's all in your mind
What do you mean you can't go?
A good night’s sleep and you’ll be back to normal.
You sleep too much.
You’re up early (haven’t slept yet)
If you would just exercise the pain would go away.
You let yourself go and didn't exercise and that's why your back is sore.
You need to stay off your feet more.
Why can't you stand in line? It’s only going to be 10 or 15 minutes.
I do exercises every morning and I never have back problems
Well you're addicted to those drugs.
Just take a couple Tylenol and get over it.
You can't go on taking morphine every day!!
Can you take 3 aspirin instead of just two?
Don't you think it is a bit early to be drinking? ( Don’t drink)
Are You Not A Junkie Yet?
Phone counselor on suicide line “no one likes drug addicts”
How can you take ALL of that medicine? I don't know how you can do that to yourself.
We can't fill that script today you still have 6 tablets left, come back when you've run out.
Is it really that bad?
Oh - you poor thing!!
You're doing everything you should so I don't know why you're still in pain
Dr to Patient when you can hardly stand, "Would you please show me how long
you can stand on one leg?"
It can't be that bad you're smiling!
Oh, Really? You look pretty happy for someone in pain
You sit here playing bingo-- how can you sit there when you claim you're in pain?
My bones ache, too, and I'm the one who is working 8 hours a day
What have you got to be in pain didn't do anything all day

Source— Chronic Pain Site


Codeine Could Increase Sensitivity to Pain: study shows


Using large and frequent doses of the painkiller codeine can actually increase sensitivity to pain, without giving the same relief as morphine, according to new research from the University of Adelaide.


This is believed to be the world's first experimental study comparing the pain relieving and pain worsening effects of both codeine and morphine.


The University's Professor Paul Rolan, who is also a headache specialist at the Royal Adelaide Hospital, says codeine has been widely used as pain relief for more than 100 years but its effectiveness has not been tested in this way before.


"In the clinical setting, patients have complained that their headaches became worse after using regular codeine, not better," Professor Rolan said.


The studies found codeine provided much less pain relief than morphine, but resulted in the same level of increased sensitivity to pain, and researchers think headache patients may be more sensitive to this effect than others.


Professor Rolan says the laboratory findings suggest a potential problem for anyone with chronic pain who needs ongoing medication.


"People who take codeine every now and then should have nothing to worry about, but heavy and ongoing codeine use could be detrimental for those patients who have chronic pain and headache," he said.


"This can be a very difficult issue for many people experiencing pain, and it creates difficulties for clinicians who are trying to find strategies to improve people's pain."


SOURCE: Painaustralia eNews, Issue 29, 23 September 2013


Scientists discover new treatment for chronic pain condition

published on March 4 2011
this article has
no comments

Scientists at the University of Liverpool have discovered that treating the immune system of patients with Complex Regional Pain Syndrome (CPRS) leads to a significant reduction in pain.

CRPS is an unexplained chronic pain condition that usually develops after an injury or trauma to a limb, and continues after the injury has healed.  CPRS I – formerly called Reflex Sympathetic Dystrophy – can arise after any type of injury.  CRPS II, previously called causalgia (a term coined in the American Civil War when it was first diagnosed), follows partial damage to a nerve.  In some cases the pain can be so severe that patients request amputation, only to find that the pain returns in the stump.

CRPS pain can improve within one year after the injury, but if it is still unchanged after 12 months (longstanding CRPS), then it will often not improve at all. Longstanding CRPS affects about 1 in 5,000 people in the UK.

The team at the Pain Research Institute discovered that a single, low dose infusion of intravenous immunoglobin (IVIG) significantly reduced pain in just under 50 per cent of patients treated, with few adverse effects. The pain relief lasted on average 5 weeks. The results of this study may change the future treatment of patients with CRPS, and have an impact on research in other severe chronic pain areas.  Intravenous immunoglobulin treatment for CRPS is currently not available on the NHS.

Although the cause of the syndrome is unknown, precipitating factors include injury or damage to the body’s tissue.  Changes in the way nerves send messages to the brain about pain may occur at the injury site.  These changes may then lead to more changes in the nerves of the spinal chord and brain.  All these changes are thought to play a role in causing and prolonging the condition.  Conventional pain drugs either don’t work, or have considerable side effects.

Dr Goebel, Senior Lecturer in Pain Medicine, explains: “n CRPS, the real effect of this treatment in clinic may turn out to be even greater than what we have already seen, because IVIG can be given in higher doses, and repeated treatment may have additional effects.  IVIG is normally repeated every four weeks and we are working to develop ways which would allow patients to administer the treatment in their own home.”

“The discovery is expected to have a real impact on the treatment of other unexplained chronic pain conditions; if one pain condition can be effectively treated with an immune drug, then it is possible that other types will also respond.”

The research is published in the journal Annals of Internal Medicine.

Notes to editors:


How NOT to Talk to a Child in Pain Top 3 things
NOT to say to a child in pain:

When you have a child who is experiencing chronic pain, people offer advice, encouragement and kind words. Unfortunately, sometimes their well-meaning comments end up doing more harm than good.

Here are 3 of the more common things we heard again and again, and why you should avoid saying them when talking to a child in pain:

1. You don’t look sick.

A child in pain does not want to hear that they look as though there is nothing wrong. Children in pain may look ‘good’, but they feel terrible and they equate these words with “You’re faking.” or “There’s nothing really wrong with you.”

2. I’ve seen children who are in REAL pain.

This was the phrase that made me want to literally shake some sense into the physicians who said it. Anaïs was told her pain was not ‘serious’ because when she was examined by doctors, she did not “jump off the table”. Seriously? Children that experience chronic pain develop a stoicism that is well beyond their years. Just because they don’t react with yelling and tears to the endless pokes and prods inflicted upon them by interns and doctors does not mean they are not experiencing severe pain.

3. Just ignore her complaints.

This is the advice parents with children living with chronic pain probably hear the most often from medical professionals, and from friends and family. While it is true that parents should not focus on their child’s pain or constantly ask for pain reports, when your child is in extreme pain it is impossible to ignore it. The pain my daughter experienced was not psychological, it was physiological and ignoring her complaints wouldn’t have made the pain go away.

Getting her the right kind of treatment, now that made the pain go away.

Editors Note:  There isn't a lot of information that is specific to children living with Chronic Pain but I thought that this was very interesting, and it is a good site to look at too.


Researchers say they've identified a distinct neurologic pattern on functional MRI (fMRI) that is specific to heat-induced pain and sensitive to the analgesic effects of opioids.

The "nociceptive pain signature" could have a wide range of uses, if confirmed and extended in future studies, Tor D. Wager, PhD, from the Department of Psychology and Neuroscience, University of Colorado, Boulder, who was involved in the research, told Medscape Medical News.

"It could be used to confirm pain in those who cannot report accurately (eg, the very old, very young, cognitively impaired) or whose reports are not completely trusted by medical or legal decision-makers," he explained. "It could be used alongside other measures, such as pain reports, facial expressions, and behaviors, in 'multi-axial' pain assessment strategies based on multiple measures."

However, he adds, "It cannot and should not be used as a 'pain lie detector' because some individuals may have real pain that is not captured by the pattern we identified here."

The research is published in the April 11 issue of the New England Journal of Medicine.

"Great Practical Importance"

The coauthors of an editorial say the fMRI-based pain signature may be of "great practical importance" given the lack of objective measures of physical pain.

"Imagine how all fields of medicine would be altered if pain could be objectified by a measure that did not require direct patient reporting," write Assia Jaillard, MD, PhD, MRI Unit, Centre Hospitalier Universitaire (CHU) de Grenoble in France, and Allan H. Ropper, MD, Department of Neurology, Brigham and Women's Hospital, Boston, Massachusetts.

Dr. Wager and colleagues conducted a series of studies involving 114 healthy men and women. Using fMRI and machine-learning methods, they identified a pattern of fMRI activity across brain regions associated with heat-induced pain. The pain signature is widely distributed across multiple regions and includes the thalamus, the posterior and anterior insulae, the secondary somatosensory cortex, the anterior cingulate cortex, the periaqueductal gray matter, and other regions, the researchers say.

In 1 study, the neurologic signature showed sensitivity and specificity of 94% or more (95% confidence interval [CI], 89% - 98%) in discriminating painful heat from non-painful warmth, pain anticipation, and pain recall.

In a separate study in a different sample of participants, the pain signature discriminated between painful heat and non-painful warmth with 93% sensitivity and specificity (95% CI, 84% - 100%).

In a third study, the neurologic signature discriminated between physical and social pain, which activates many of the same brain regions as physical pain, with sensitivity of 85% (95% CI, 76% - 94%) and specificity of 73% (95% CI, 61% - 84%).

Dr. Jaillard and Dr. Ropper say the social pain assessment findings are provocative. But they caution that, for this assessment, participants recalled a recent romantic breakup while viewing a picture of their ex-partner, which is an "uncertain stimulus with respect to neural processes that are engaged."

In their final study, Dr. Wager's team tested the responsiveness of the pain signature to the opioid analgesic remifentanil. They found that activity in the strength of the signature was "substantially" reduced when remifentanil was administered.

Toward a Better Understanding of Pain

Beyond its use as an assessment tool, the neurologic pain signature could help to identify separate contributions of multiple brain systems to pain, Dr. Wager told Medscape Medical News.

"It is likely that pain is not one 'thing' and that a mix of different experiences and judgments contribute to a person's assessment and reporting of pain. By identifying neural patterns that track certain types of pain in specific circumstances, we can better understand the different contributions made by each system to different types of pain, in different circumstances. This could allow us to identify different neurophysiological 'ingredients' of pain that respond to different treatments," he explained.

The pain signature could also help in evaluating existing treatments at the brain level and better understanding which pain-related processes are influenced by different treatments in different patient groups, Dr. Wager said. "Many treatments can relieve pain, from opiates to acupuncture to meditation, but it is not yet clear how all these treatments work in the brain or whether they work in the same way, or whether they have the same long-term implications for the health of the brain and the person," he explained.

Despite the promise of this research, the results require "cautious evaluation for several reasons," Dr. Jaillard and Dr. Ropper write in their editorial. They note that the researchers studied only cutaneous pain and not pain in the context of disease, so the findings may not apply to clinical circumstances, something the authors also make clear in their article.

The findings also don't shed light on the issue of chronic pain, "one of the most vexing problems in general medicine," Dr. Jaillard and Dr. Ropper note. They also write that the "spatial resolution used in the study was limited, reflecting the low sensitivity of the 1.5-T fMRI system that was used for most of the testing, and this may have led to the misidentification of small deep-brain structures that contributed to the neurologic signature response for pain."

They say further studies in diverse clinical circumstances with the use of more-sensitive MRI acquisition techniques are needed to validate any pain biomarker.

Dr. Wager and colleagues agree that more study is needed. "We are currently testing the generalization of the neurologic pain signature to other types of pain (cold, electrical, ischemic, mechanical, inflammatory, etc.)," Dr. Wager told Medscape Medical News. "We are also beginning to test it in patient groups, to develop the signature as a method for detecting hypersensitivity and allodynia, conditions of enhanced pain in response to normally innocuous or mildly painful stimuli."

Information from Industry

Dr. Wager said his team is also using the neurologic pain signature to assess several kinds of psychological interventions, including cognitive regulation of pain, acceptance and mindfulness, expectation, distraction, and other interventions. "Ultimately, we would like to develop an understanding of how psychological and pharmacological interventions affect the way the brain constructs pain, and how 'deeply' these interventions influence how the brain processes pain-inducing signals from the body."

The study was supported by grants from the National Institute on Drug Abuse, the National Institute of Mental Health, and the National Science Foundation. Disclosures for authors and editorialists are available at

N Engl J Med. 2013;368:1388-1397, 1447-1449. Abstract Editorial


Editors Note:  This is a great start in being able to prove our pain beyond what we are able to tell the medical professionals.  It is early days, but at least there are people thinking about pain in ways other than just pharmaceutical.


These articles are reprinted for your information only, and do not necessarily reflect the opinion of the Administrators or Members of The Australian RSD/CRPS Support Group.

This site is for general information only.  I am not a Medical Professional but I do live with RSD/CRPS and so have a good understanding of the issues of this condition.  Information here is to be used as a guide only and before trying any treatments you should consult with your GP and/or Specialist.  The Australian RSD/CRPS Support Group accepts no responsibility for an individual’s choices after reading the following information.


Tracy Pitman​

Information Co-Ordinator

PO Box 9



Email – [email protected]

Phone – 08 85 811 007

Mobile – 0401 794 884 (send text only with your number and I will call you back)​

Facebook -

Reflex Sympathetic Dystrophy - RSD