‘We’ve been blown away by the response and the interest!’ Those in Geelong and region, suffering from the rare chronic pain condition CRPS (Complex Regional Pain Syndrome) formerly known as RSD, have a support group that is welcoming and educational. They meet up every month on the first Wednesday and third Saturday at the South Barwon Community Centre in Belmont. We hear from Kate, who with her friend Rose, founded the support group in August 2016. ‘We are sure there are more people with CRPS within the region who would be feeling isolated, not knowing we exist. Please spread the word and SHARE this story.
‘We saw the need for a CRPS support group after a small group that we’d been attending at a private pain clinic ended. I wanted it to be inclusive and open to all in the Geelong region, including caregivers.
‘This is a rare neuro-inflammatory chronic pain condition but we have more than 50 people in the group. Each person thought they were alone and had no idea there were so many of us in just one town. There might be others out there who’d like to join us too.
‘We meet twice a month and alternate between having a professional guest speaker and social meetings. The social meetings give us a chance to chat and get to know each other. The guest speakers are made up of amazing professionals who volunteer their time and expertise. We’ve had psychologists, NDIS advocacy representatives, physiotherapists, pain specialists, clinical hypnotherapists. We’ve been blown away by the response, generosity and the interest!
‘What’s been the best thing though, is uniting people who have a horrible incurable, degenerative pain condition and having them become fast friends. We visit each other in hospital, we discuss our experiences with medications, treatments and symptoms and help each other get through the tough days. we have members from all walks of life, including parents of kids with CRPS and carers of family members that have it.
‘I’m passionate about getting the word out there. Anyone with CRPS are welcome. We only ask $3 to cover hire of venue and refreshments. If you know someone with CRPS let them know we are there to help. If you are a professional who’d like to share your knowledge, please also get in touch. CRPSgeelong@gmail.com or https://www.facebook.com/groups/CRPSGeelong/
Story: Jacqui Bennett. Photo: Kate on the left with friend Rose.