Courtney's story

My name is Courtney and I am a 25-year-old Occupational Therapy student. I would like to share my experience with Complex Regional Pain Syndrome (CRPS), but first let me express what I am like as a person. I’m someone who loves nature and animals (the annoying person who stops the traffic to let the ducklings cross the road!), making people laugh, music, visiting new places, and learning new things.

My initial injury occurred at work in January 2019. I worked in hospitality and was forever whacking or cutting my hands. One day I whacked the dorsum of my hand and wrist on the oven door handle. The pain felt torsional with pins and needles. Not long after I noticed a ganglion cyst, which was excised surgically later in the year. Post-surgery my symptoms exacerbated. I resigned from work and haven’t been able to work since.

Over the past three years I have undergone numerous investigations and interventions including bilateral surgeries, steroid injections, hand therapy, physiotherapy, and many medications. In March 2020 I underwent a median nerve release. Post-surgery I was completely disassociated from my right upper arm and my symptoms intensified. It was like a switch had turned off, my arm felt foreign, and I couldn’t even look at it. Every time I tried to use my right arm all I felt was guilt and as though it wasn’t mine to use. It felt repulsive, and no matter how much I tried staying positive I always had those feelings at the back of my mind, and there are regular moments I do now. It is like your body is trying to reject your limb, so you are fighting it 24/7.

Trying to access pain services has been really challenging. There were lost referrals, long wait times, and difficulties getting ACC to accept my claim. I asked many physios to help, but each time they had either not heard of CRPS, or felt that it was beyond their capabilities. This meant that I had no therapy on my right arm for over a year, and I have only recently started physiotherapy again.

Thankfully I was referred to wonderful Musculoskeletal Physician, who diagnosed my CRPS in December 2020 and I couldn’t ask for anything more. After seeing my MSK physician, ACC accepted my claim, initially as right upper limb CRPS, but now I have coverage for my entire CRPS complex, as it has spread to my neck, torso, and contralateral upper limb. It’s not all doom and gloom, my legs work completely fine!

The issue with chronic pain is that it is often silent and invisible. Therefore, you are judged for being in pain as that is easier than trying to understand. If you sat with me, you wouldn’t know I have CRPS because I look completely healthy. If I’m having a flare, no one will notice unless they understand CRPS. Unfortunately, I have had to hide my CRPS and treatment from everyone in my personal life as they haven’t taken the time to understand. It is difficult, it’s like hiding away a part of you that wants to be accepted but instead it is judged and treated with no respect. I have had many hurtful comments along the way, for example “You belong in a circus”, and “You’re overreacting”. I try ignoring negative comments, but obviously at times it is upsetting.

If I do tell people, I am mostly made to feel ashamed and to blame for being in pain. No matter how you explain chronic pain, it often falls on deaf ears. No one should have to hide their health conditions. If more people understood chronic pain, then those affected may not experience such severe symptoms. My MSK physicians have been the only people to fully understand, to have a laugh about it all, to help me accept the CRPS, and to support me to become more resilient. Out of everyone I highly recommend them for support with CRPS and a variety of musculoskeletal and neurological pain conditions, they have been my rock throughout my treatment.

Managing CRPS is challenging, treatments that have been more successful include bisphosphonate infusions, clonidine patches, and to some extent pregabalin and nortriptyline. I was impressed with the bisphosphonate infusion as all my chest pain abated for several weeks and I haven’t sweated an inch since. I also find TENS devices extremely helpful with some of my CRPS affected areas, they don't abate pain but take the edge off which to me helps.

Currently due to my hypersensitivity most things aggravate my CRPS, such as clothing, driving, excessive physical activity, immobility, direct sunlight, sudden temperature changes, air conditioning and forceful touch. That might seem like a large list, but CRPS is a gift that keeps on giving!

When it comes to hobbies and rehabilitation, I like to try new things, for example, I can’t swim but I tried paddle boarding recently, even though it meant getting stuck in the middle of the estuary as I’m not yet strong enough to paddle back against the current! Things like that are hilarious, you must find humour in it all otherwise you won’t cope well. I also like to listen to music, and when I’m doing strength exercises for my hands I will have a sing along to make it fun, even if my CRPS flares. I’ll do the same driving, whilst looking at the different scenery, or if I’m travelling to Auckland then all the flash cars distract me! I also try to go bird watching to assess population dynamics among many species just to keep my mind thinking.

My CRPS affects everything in my life. Not only am I in excruciating pain, but I also experience chronic fatigue, allodynia, hyperalgesia, body perception disturbance, restricted range of motion in the upper extremities, nausea, and pre-syncope to name a few lovely symptoms!

Whilst initially receiving treatment I completed a BSc (Biodiversity Management), however my experiences with CRPS made me realise that I want to go into health. Previously, I was studying Physiotherapy but now I am currently studying a BHSc (Occupational Therapy) through AUT, and I would like to try to enter the MBChB programme to specialise in Musculoskeletal Medicine, to ease the burden for others by guiding them through their treatment journeys. I’d also like to work towards a PhD to develop research skills. Studying is great, despite the extremely difficult drive! I enjoy learning and I always read studies on chronic pain and CRPS. Studying also gives me normality, I haven’t been able to work since 2019 so my studies play a crucial role in my rehabilitation.

I know I will live with CRPS for the rest of my life and it’s probable that I will develop localised osteoporosis in my right wrist. Even if I haven’t had the best of luck treatment wise, that doesn’t mean I haven’t gained anything from this experience. I have learned so much, not only medically and academically, but emotionally too. Even though my CRPS has strained and broken relationships, it has also helped develop some meaningful joyful ones too. Before all this happened, it was my ambition to become an ethologist, now I’m determined to treat and manage pain and involve myself in research and teaching along the way. We need to support clinicians to understand pain can also be a disease. A deliberating disease that I truly believe we could change by acting attentively.

Out of all the care I have received I feel people with CRPS need regular access to physiotherapy to allow our bodies to desensitise effectively, but unfortunately not many physiotherapists are trained in the chronic pain scope. Therefore, they do not necessarily have the understanding needed to support patients. Also, GP's need to be aware of the complexities involved with pain, I have had many experiences when practitioners have taken one look at me and told me what I am feeling is "in my head" and for anyone experiencing a health problem, especially CRPS this is disappointing.

I have had CRPS for nearly four years now and I still feel I need to mask what I can because from experience people will judge or invalidate me, including family and friends. That is why I'm determined to change not just CRPS, but chronic pain as whole for everyone.