Living with CRPS
Ashley’s story
“Aren’t you exaggerating?”, “You don’t look sick” – phrases that many with invisible illnesses like CRPS hear too often.
Living with conditions that others can’t see comes with a wave of misunderstanding and a serious lack of empathy. We spoke with someone who’s breaking the silence and raising awareness with determination and resilience. This is Ashley’s story:
Meet Ashley
Ashley’s journey with Complex Regional Pain Syndrome (CRPS) has turned her into a passionate advocate for disability and accessibility. From her home in Canada, she has dedicated herself to shining a light on what it means to live with CRPS, breaking down barriers and building understanding.
Whether she’s out exploring Canada’s nature with her two adorable pups, Izzy and Ember, or diving into the pages of her favorite books. Her story proves that living with CRPS doesn’t mean letting go of what you love – it’s about discovering new ways to embrace life and inspire those around you.
Now, let’s hear Ashley’s challenging journey in her own words.
The journey to diagnosis
“I was extremely lucky that my surgeon not only knew what CRPS was but he knew the signs and symptoms and was able to diagnose me, not many people with CRPS can say the same, for a lot of people it can take years to get a diagnosis.”
I started my journey with CRPS when I fractured a bone in my wrist and tore my TFCC while I was working. About a year later I had surgery to repair the tear, after surgery I was put in a large plaster splint for 4 weeks, when they were cutting it off I was in excruciating pain and told the doctor I could feel it, the doctor immediately dismissed me, but thankfully my surgeon didn’t.
He believed me and recognized the extreme burning pain and sensitivity was way beyond what was considered normal for my injury and told me he suspected I might have CRPS. He put me on medication right away & I started physio as soon as I could. My arm had become hypersensitive to touch, I had changes in my hair and nail growth, I had swelling & discoloration that wouldn’t go away and the temperature in my arm changed, I couldn’t keep it warm even though it was burning up inside.
After a few weeks and some testing my surgeon diagnosed me with CRPS. I was extremely lucky that my surgeon not only knew what CRPS was but he knew the signs and symptoms and was able to diagnose me, not many people with CRPS can say the same, for a lot of people it can take years to get a diagnosis. It can be hard to find doctor’s that know about CRPS and there are still doctor’s that don’t believe it’s real.
Never heard about CRPS?
“CRPS is uncommon and its cause isn’t clearly understood. It’s classed as the most painful known chronic pain condition.”
CRPS is a severe form of chronic pain that usually affects a limb and typically develops after an injury, surgery, stroke or heart attack. CRPS is uncommon and its cause isn’t clearly understood, however it’s thought to be caused by an injury to or difference in the peripheral and central nervous systems.
The main characterization of CRPS is pain that is out of proportion to the severity of the injury. CRPS is classed as the most painful known chronic pain condition, it reaches approximately 42 out of 50 on the McGill pain scale, rating higher than non terminal cancer & amputation of a digit without anesthesia.
My daily life
“I got to a point where I had to start using a wheelchair and electric mobility devices. I also needed the help of my partner for help with day to day living, as my partner became my full time caregiver.”
Over the last 13 years of living with CRPS, my life has changed drastically. I have progressively gotten worse due to other surgical procedures or injuries where my CRPS spread to other parts of my body. I had to leave a career that I had worked really hard for and that I loved pretty quickly after being diagnosed, my relationships struggled because I was struggling.
I tried all sorts of treatments and had a surgical sympathectomy (this is no longer a recommended treatment) where they burned off specific nerve endings in my C spine to help stop the pain to my wrist, but only made things worse, causing my CRPS to spread and causing new symptoms like temperature dysregulation, brain fog and extreme fatigue.
I also started developing other medical conditions that affected my central nervous system, over the last several years I have been diagnosed with fibromyalgia, myalgic encephamyelitis/chronic fatigue syndrome and dysautomonia.
I got to a point where I had to start using a wheelchair and electric mobility devices. I also needed the help of my partner for help with day to day living, as my partner became my full time caregiver.
I was extremely lucky to eventually find an amazing pain specialist who specialized in CRPS and started getting me on a treatment plan including ketamine infusions.
These treatments helped to reduce my pain levels and sensitivity enough that I could slowly over the next few years increase my steps so that I could graduate to using a walker/rollator in combination with my other mobility devices.
Using a mobility aid
“On my better days Olive and I have had some pretty fun adventures, making it to some amazing places that I never would have been able to make it to without her.”
I had a hard time finding a rollator that would work for me. Due to my sensitivity and pain in my arm from CRPS most rollators had too much vibration in the handles and were too heavy for me to lift. I started to search on the internet for light weight walkers and thankfully came across byACRE and their rollators.
After some research and comparing I decided on the Carbon Overland in green that I named Olive. With CRPS my mobility and function fluctuates day to day, so on my better days Olive and I have had some pretty fun adventures, making it to some amazing places that I never would have been able to make it to without her.
To everyone who’s never heard about CRPS
“If you want to learn more or support someone with CRPS, consider doing some research or simply asking them about their experience. Your understanding can make a huge difference.”
What’s important to know about CRPS is that it can affect anyone, regardless of age or gender, and its symptoms can vary widely from person to person. Early diagnosis and treatment can make a significant difference in managing the condition.
If you want to learn more or support someone with CRPS, consider doing some research or simply asking them about their experience. Your understanding can make a huge difference.
Follow Ashley
Want to keep up with Ashley’s adventures? Follow her on social media, where she shares her journey with CRPS, the beauty of Canada’s nature, and how she continues doing what she loves – always at her own pace.
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@crpswarrior_2012 |