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)

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Useful websites about pain and self-management

The Pain Toolkit was created by Pete Moore in the United Kingdom. He developed the toolkit from the strategies and skills he learnt along the way on his own pain journey. He regularly speaks to health care professionals and patient groups in the UK, Europe and around the world. “Self-managing pain takes time, effort and teamwork” – Pete Moore.

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

‘RetrainPain‘ created by a non-profit dedicated to free online pain education
‘Navigating Pain‘ by The New Zealand Pain Society

Kiwi CRPS board members

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

Kiwi CRPS members

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