Living with CRPS

Complex regional pain syndrome has no easy fix and no single recommended treatment and must be managed through a combination of strategies. Some of these are delivered by multidisciplinary pain teams, including doctors, specialists, physiotherapists, occupational therapists, and psychologists; however all people with CRPS need to learn pain self-management techniques to be able to lead good, functional lives.

Although everyone’s experience of living with persistent pain is different, there are many common factors. Pain impacts us physically, emotionally, psychologically and socially. It can affect our strength and fitness, our mental health, the ability to complete our usual activities at home or work, our sleep, and our social connections and relationships. 1 Living with pain is challenging. Learning effective ways to cope with the pain can improve quality of life.

Next, we look at self-management of pain and then the Kiwi CRPS board and some members describe how they live with complex regional pain syndrome.

Self-managing chronic pain

CRPS is complicated and people with the condition experience it in different ways. A therapy that works well for one person, may not make much of a difference for another. Importantly, no one therapy is likely to work in isolation. People who successfully manage their CRPS are usually doing many small things together.

Some of the common strategies and skills are:

  • education – finding out as much as you can about pain science and your condition, CRPS. Knowledge is power and understanding why pain persists can help you take control of it. Access good quality, up-to-date information.
  • pacing – planning daily activities so that you don’t overdo things which can result in pain flares. Alternate activity and rest periods. Pacing is an effective way to keep pain at lower levels and allows you to function more consistently. Pacing involves finding the balance between under- and over-doing it. 2
  • relaxation and stress management – strategies can include breath work, meditation, yoga, heat, stretching. Performed on a regular basis they may help you cope better with your pain.
  • movement – staying active as much as you are able, with the support of pain medications, can help maintain function in your affected limb(s).

Following are pain self-management strategies that are used by people with complex regional pain syndrome including many members of Kiwi CRPS:

Medications are an important part of the toolkit but they are not a magic bullet – you can’t rely on them alone. It’s important to use a variety of strategies to help reduce pain. Try different techniques until you find the combination that works for you.

(Sources: 1, 2, 3)

Useful websites about pain and self-management
The pain toolkit

“Pain self-management is about learning new (or using old) skills and trying them out to see what works for you”

Pete Moore

Other resources that provide information about understanding and managing chronic pain, include:

Kiwi CRPS board members

Meet our board members and how they live with complex regional pain syndrome.

“I’ve been living with CRPS for 4 years, and after redefining who I am as a chronic pain sufferer, I bought a motorhome and now live full time on the road. I’ve learnt I am happier to be beside the ocean, letting the sound of waves crashing calm my soul. I’ve learnt I can only drive a short distance then need to have time to chill out. My two dogs make sure I walk them daily; even just a short walk ensures I’m outside breathing fresh air. 

Becoming a Board member has given me a purpose after losing my career, and I love working with others to make our charity sustainable for the future.”

Amanda Scott, Chairperson

“Life changed in 2013 when I ruptured my calf muscle dancing. Diagnosed in 2018, and eventually sent to a fantastic pain team who taught me how to truly “live with crps”. 

These days you can find me down at the beach enjoying a stroll (and coffee) along the boardwalk or getting my feet wet walking in the water – the beach is definitely a happy place. At home I have a keen crew of “helpers” while in the garden, who give me constant entertainment and are just one of the many distraction techniques I now use in my day to day life. Weekends are full of new adventures – like mini putt and finding new places to go and see. Focusing on quality of life has changed everything on how I live with crps.”

Debbie Beazley, Secretary & Treasurer

“I’ve had CRPS for two years following a fracture in my foot. Prior to CRPS I was an active person who walked, hiked, and cycled most weekends. CRPS ended that for a long, long time and I grieved for my former life. Once I accepted that I had this chronic pain condition, I got stuck into my rehab supported by pain specialist doctors and physios.

Two years on I have finally got back on my bike doing little laps around my neighbourhood. I love cycling and this means a lot to me. After limping around slowly for two years, it feels like freedom. It still hurts but it’s worth it and I have learnt how to manage the pain. Oh I love coffee too – it is one of life’s small pleasures for me.”

Jane Clark

Kiwi CRPS members

Some of our members describe the things that get them through each day and help them cope with their chronic pain.

“Bella gives me a great, constant distraction everyday, no matter how I may be feeling. And on those days that are more challenging, just having her with me helps the most. With unconditional love, my girl gives me the strength to fight my fights. She is my first thought in the morning, my motivation and distraction during the day, and my last thought at night.”


“Gardening is one of the greatest hobbies for some of us with CRPS, and it’s great for mindfulness. A bunch of flowers always brings joy.”