Australian teacher Catherine loved to be active, often enjoying long walks and bike rides with her husband despite her struggles with osteoarthritis. One evening, only 10 minutes into her ride, she was struck with vision troubles and was concerned she’d suffered a 2nd retina detachment. A long trip to the Eye and Ear Hospital in Melbourne showed her eyes were thankfully fine, but she couldn’t have predicted the following morning’s events.
When Catherine woke up, she stretched her feet as she does every morning… But this time heard a tremendous clunk. An extreme, constant pain circulated through her left foot, quickly swelling as she watched, and she was unable to rest her foot back on the bed. After a trip to the hospital and an x-ray showed there was no injury or damage, Catherine returned home and was later able to weight-bear on the foot again (despite the notable swelling). A few days after, she had an ultrasound on the ankle, which thankfully showed no signs of damage.
Only 7 days later, though, Catherine went through the experience all over again, this time with the swelling in her left leg reaching up to her knee. Rushing to a larger hospital and hoping for an MRI, the condition was initially put down to gout – despite several of Catherine’s gout-suffering friends disagreeing.
Over the coming months, Catherine endured a range of tests, scans and medications to find the route of the issue and alleviate her symptoms to little effect. As her symptoms progressed, she said “I was so disabled my dear husband, Gregg, had to take time off work,” to aid with support and her recovery. Eventually, a Nuclear Bone Scan (or Bone Scintigraphy) organised by a rheumatologist indicated Catherine’s pain and swelling was due to Complex Regional Pain Syndrome (CRPS).
“I was referred to a pain specialist and rehabilitation, though I had to wait a while for this. In the meantime, I saw my Physio... He was outstanding,” Catherine said. “When I saw him he said ‘Cath - you’ve got to put a shoe on it and put that foot down’. I was on crutches and a knee scooter for some months."
Catherine was unable to work for 8 months following the initial incident and, while she was able to regain some of her mobility thanks to a combination of medication and physiotherapy, she became incredibly anxious that the condition would spread to other areas of her body. Seeking information and support on Complex Regional Pain Syndrome, she stumbled across Burning Nights CRPS Support’s website one sleepless night and tried the Live Chat feature.
After speaking with Burning Nights Trustee Lisa using the website's Live Chat feature, Catherine said “I can ask for help and feel supported. It’s also great to read about how CRPS has affected others. Victoria's story in particular… Seeing what happened to her made me push a little bit harder [with my rheumatologist].”
Trying to find positivity in a period of darkness, though, Catherine did discuss how her time away from a usually stressful job did give her some time to focus on herself. “I got back into reading again and I just read and read and read so many books,” she said. “Even though the stress of not knowing what was going on, it was kind of a bit nice in a way.”
To help improve her limb functioning again, Catherine also tried Mirror Therapy alongside her physiotherapist after a specialist doctor highly recommended it, even calling it "essential". Mirror Therapy, or Mirror Visual Feedback Therapy, is considered by researchers as a great technique to use in conjunction with other therapies to give the illusion of normal movement in a limb, stimulating the brain’s regions for movement, sensation and pain. Catherine said, “I just got an IKEA mirror. And… I did it, but… how much of it helps? I do know that it's actually really important to try and trick your brain.”
While Catherine found medication that helps control the swelling in her left leg and foot, she still occasionally feels intense pain in her ankle and has since felt similar sensations in her right foot too. “I guess I'm just... Fearful of what will happen next,” she admitted.
However, finding Burning Nights CRPS Support has helped her feel less alone in her journey. “I don’t know anyone else with CRPS. No one seems to have ever heard of it,” Catherine said, reflecting how many others affected by CRPS feel when they’re first diagnosed.
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