I’ve been diagnosed with CRPS. This is a common way that the conversation begins with people who contact me, often scared witless by what they have found out online or by what they have been told. Others are confused and do not really understand what CRPS means, except they know it hurts like hell and has turned their life upside down.
Before reading any further, have a look at this link that outlines the latest criteria named after the place where it was recently established: The Budapest Criteria
Complex Regional Pain Syndrome, also known as RSD (the old term — reflex sympathetic dystrophy), like any ‘syndrome’ is a collection of signs and symptoms that are gathered together and given a name. However, CRPS is complex (biologically), it is regional (usually affecting a limb), it is painful (one of the worst), and as I said, a syndrome. There you have it, CRPS.
Many people like to have a diagnosis, a label and a peg on which they can hang their hat. A diagnosis is useful if everyone then understands the implications and the treatment is standardised thereafter with effect. This is not the case with CRPS as few really seem to understand the condition.
Depending on where you go, you will be in receipt of treatment that varies according to the profession you see. Medically you are often offered drugs and interventions that can work to relieve some of the symptoms. As with any pain though, despite relief that everyone hopes for, drugs do not teach you how to restore normal living. For this you need to work with someone who understands the complexity of pain and CRPS and who can guide you to think in the right way so that you focus upon the right actions to move forward.
Here are some tips:
1. Read the classification and ensure that you are indeed suffering CRPS (there is type 1 and 2, which differentiate those with the condition from a non-nerve injury and a nerve injury that trigger the complex and painful responses)
2. Work with someone who genuinely understands CRPS, can educate, guide and motivate you through a comprehensive programme — that person must also know that pain can and does change!
3. Understand that medication has a role but you have a bigger role. There in only one person who can transform pain, and that is you. You just need to know how.
4. Do not nurture fear by reading about other’s difficulties online. We all suffer fear, anger and other negative emotions, but they are not helpful if they persist. You can learn the skill of deciding how to think, perceive and act using the strengths that you already possess in overcoming your pain.
5. You are NOT complex regional pain syndrome. Do not let this or any other conditions define you. You are ________ ________ (fill your name here) who is a son, brother, wife, husband, father, mother, employee, sport lover, art critic….again, fill in yourself and remember it.
6. Focus on what you can do; focus on your strengths and focus on overcoming the pain and CRPS.
The Pain Coach Programme focuses on your strengths that you will use to overcome your pain, including resilience, motivation, empathy, compassion, concentration and many others. Developing and growing your inner drive, you will learn skills and develop your knowledge so that you in effect become your own coach moment-to-moment, choosing to take each opportunity to transform and change pain on your return to a meaningful life.
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