November is celebrated globally as Complex Regional Pain Syndrome (CRPS) awareness month, and CRPS Network Australia have been working hard to raise awareness of this little-known disease hoping to reduce diagnosis times and improve outcomes for affected Australians. Painaustralia supported this campaign via social media. This article was supplied by Alysia Bishop, Chairperson of CRPS to explain more about the condition.
33 landmarks around the country have been lit in orange lights in support of this campaign. What an outstanding effort. Patients, advocates and supporters have also been dressing in orange and posting photos to social media; information booths have been held in shopping centres, medical clinics and hospitals, and we’ve even had a drift car carrying an awareness message around Barbagallo race track in Perth.
CRPS is a is a pain condition that most often affects one limb usually after an injury, trauma or surgery and is characterised by severe burning pain out of proportion to the original injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.
If CRPS is not diagnosed and treated early, there is a high likelihood that it will go on to be a chronic (lasting more than 6 months), progressive disease which is often associated with substantial disability, loss of quality of life and significant personal and societal economic burden.
CRPS is estimated to affect 1 in every 3,800 people; many will be in severe pain for months to years before they get a diagnosis.
It is accepted that diagnosis within 3 – 6 months is vital in order to block the pain signals and start physiotherapy to restore or maintain function of the area affected by CRPS. Sadly, this is not a common occurrence. In our recent survey, we found over 20 people waited for more than 10 years. Half of those for 20+ years, the longest being in severe burning pain for nearly 42 years of their life and having been told the pain was in their head before finally being given the diagnosis of CRPS.
In the comments section of our survey, where we asked how diagnosis times could be improved, almost 70% of respondents thought that GP’s should be taught more about chronic pain, and CRPS, at medical school.
“I was told by a pain specialist that there is something they could have done if they had caught it earlier. My GP hadn’t even heard of it, so that didn’t help.”
Once diagnosed, or if CRPS is suspected, it is also vital that patients are seen as soon as possible by a pain clinic. The International Association for the Study of Pain (IASP) recommends that the wait is no longer than 1 week because CRPS is ‘a painful, severe condition with the risk of deterioration or chronicity’. We are glad to see that better access to pain specialists and pain management centres is a key element of Painaustralia’s National Strategic Action Plan for Pain Management. It is so important that we improve diagnosis times and access to multidisciplinary, allied health care. Currently, patients can languish for well over 12 months on public pain clinic waitlists – it is not acceptable.
For this reason, it is imperative that more doctors are encouraged to train as pain specialists, an area where there are currently fewer than 300 practising, and where many of the top specialists in the field are close to retirement age.
We also need to work more closely with WorkCover and other insurance organisations around the country who, by slowing down approval times for treatments, are creating permanent disabilities in CRPS patients who could possibly have gone into remission had their treatments been approved in a more timely manner.
CRPS is a serious pain condition that turns people’s lives upside down, forcing them from work, away from friends and family and surrounded by feelings of desperation and depression in the face of constant pain. We need to continue to raise awareness across the medical profession and the general public in order to better diagnose and treat this pain condition.
Chairperson, CRPS Network Australia Inc.