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Courtney Spencer shares how her diagnosis has affected her life and tips on coping with chronic pain
Most ankle sprains feel better after a few weeks rest and physio but sometimes Complex Regional Pain Syndrome (CRPS) is triggered by minor injuries such as these, which unfortunately was the case for Courtney Spencer from the US.
After spraining her left ankle, Courtney – who also has cerebral palsy – put up with years of pain even after the sprain had healed. She says: "I'm already mobility impaired due to cerebral palsy. However, I could still walk short distances until I had multiple sprains in my left ankle. Once it had healed, I was left with non-stop pain, colour change, swelling and weakness.
It took years for Courtney to finally get a diagnosis of CRPS. For six years, I had tests and scans which all came back normal, and I was told it was all in my head," she said. When I was finally diagnosed with CRPS, I cried - I was so relieved.
Like many with CRPS, Courtney finds the pain very difficult to deal with and it has hugely impacted her life. She is no longer able to walk. "The pain is mentally and physically exhausting," she says. "I have days where I am very moody and it takes all my energy just to get out of bed. I can no longer walk with my walker, transfer without a ceiling lift or bear weight to stand in my wheelchair without being heavily medicated."
Having CRPS has also been very detrimental to Courtney's mental health. "Overall, I feel my anxiety and depression have been affected the worst – I have to take things day by day," she says.
Due to her cerebral palsy and neurological damage, Courtney hasn’t yet found any treatments that help: "I can't do a lot of the traditional CRPS treatments, or they won't work well. Right now, I use cannabis and opioid pain medicine but I still have pain.
Despite her struggles, Courtney has found things that help her cope day to day, and has even made time to help others.
"I take care of an elderly neighbour in need, that helps me stay busy and I try and distract myself as much as possible," she explains. "I also nap, and I've found that sleep music stations – like meditation sounds – help me to relax and sleep. My boyfriend and family do their best to understand, as they know I nap daily, avoid going places with large crowds and that I can be very moody. I hate that I get grouchy but man, the pain!"
Courtney wants to help others understand more about CRPS and offers her advice for other people diagnosed with the condition. She says: "I spread awareness about CRPS on social media – I want everyone to understand that it is not a mental health condition, isn't made up and affects every part of someone's daily life. If you've recently been diagnosed with CRPS, do your research - the Burning Nights CRPS Support website has lots of great information and community support – and take life one day at a time. If you're not up to something, just rest and stay focused on trying to keep going."
We know that CRPS can present so differently from one person to the next, so it's hugely helpful to hear about others' personal experiences. If you would like to share yours as Courtney has, visit our Share your CRPS Story page and complete the online form.
Happy to be interviewed for more details about your experience? Remember to tick that box so one of our team can get in touch.
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