In just a few months the newly formed CRPS Geelong, a support group for people with CRPS based near Melbourne, has almost 50 members—yet almost all thought they were the only ones living with the condition in their local area.
Co-organiser Kate Hibbert is not surprised. Having lived with Complex Regional Pain Syndrome (CRPS) for the past 16 years, she knows the sense of isolation it brings.
“Some days I have to lay down and rest for a few hours after getting the kids to school. Other days I don’t even have the strength to get up in the mornings, I can’t drive and I’m home-bound,” she said.
“Most people with these kinds of challenges aren’t really engaged with the community, but they are in great need of support.
“A lot of our members had no idea there were so many others living with CRPS, right on their doorstep.
“By joining our group they find support, understanding and encouragement, and they can build their social network. There's no better therapy than knowing you're not alone.”
The group meets twice a month for coffee and a chat, and once a month invites a guest to speak about new therapies or management strategies. Members can also connect online via the CRPS Geelong Facebook group.
The group is open to anyone in Geelong and the greater Geelong region who is living with CRPS or a nerve pain condition, as well as interested family members and friends.