clinical practice
A new hope
Rare chronic condition might finally be treatable .
By Elise Hartevelt
Very few researchers have endeavoured to do what Professor James McAuley and his team are about to embark on .
They ’ ve started a large , world-first trial exploring whether physiotherapy in combination with a drug can treat a rare chronic condition characterised by intense pain in parts of the body .
So far , definite treatment for Complex Regional Pain Syndrome ( CRPS ) has eluded scientists for decades as its underlying mechanisms are hard to pinpoint .
“ There ’ s a real unmet need for people in the community living with this really devastating pain condition for which there ’ s no treatment ,” McAuley from the University of Notre Dame Australia said .
“ It gets to the point that these symptoms become extremely distressing .
“ So , we ’ re starting one of the biggest trials that may have been conducted globally , and we ’ re able to do that because we ’ re doing it as a tele-trial .”
24 | nursingreview . com . au
McAuley joined Nursing Review in a conversation about this rare chronic condition and whether his team is close to finding the cure .
NR : What are the main symptoms of the condition and how can someone develop it ? JM : We ’ re investigating two promising treatments for CRPS . It ’ s a rare condition characterised by some horrible signs and symptoms that are very painful for the patient . So , for example , they may get a swollen hand or other peripheral parts of their body , although it ’ s usually the hand .
The main symptoms are intense pain and visible signs and symptoms , such as inflammation , swelling , changes in sweatiness , sometimes changes in the skin quality , colour and texture , and also changes in the quality of hair and nails .
Some people might get a hairier or less hairy limb , or nails that are either stronger or more brittle and crack . As time goes on , it becomes worse and worse . Unfortunately , there are very few treatments available for them .
The condition occurs most commonly following fracture or surgery and its incidence peaks between 50 and 70 years old . It ’ s a little bit more common in females than males , and we think that ’ s because [ elderly ] women tend to break bones a bit easier .
When someone falls , they often put their hand out to stop themselves from hitting the ground and may fracture their wrist . Then , they go to emergency and get some kind of slab on their hand , or maybe have an operation . And for most people , they recover very well . But about 3 to 5 per cent of people , when the slab or cast comes off , their hand doesn ’ t get any better but instead starts to get worse . It starts to feel worse over time and gets very , very painful .
It gets to the point that these symptoms become extremely distressing . And the treatments for it can either be ineffective or very intensive and marginally effective . So there ’ s a whole group of people in Australia with these symptoms and CRPS , for which evidence-based options are extremely limited . And hence , we came in with the trial .
How far has research progressed in finding a treatment for people with CRPS ? There ’ s so much we don ’ t know about this disease . One of the reasons is because