The Missing Piece: Essential Information at the Point of CRPS Diagnosis

The analysis of the #CRPSisreal survey responses, from people with lived experience of a Complex Regional Pain Syndrome (CRPS) diagnosis, reveal that the overwhelming majority of patients report minimal to no information at diagnosis. This highlights a significant gap in patient education and support.

In November 2024, as part of Complex Regional Pain Syndrome (CRPS) Awareness Month, Burning Nights CRPS Support developed a survey titled #CRPSisReal, which aimed to investigate the lived experiences of people living with CRPS. It is with great thanks to the Burning Nights community that we received 120 responses, although this does not represent the whole CRPS community. We have now completed an analysis of those responses.

If you have never heard of Complex Regional Pain Syndrome (CRPS)? Click here to find out more, before continuing to read this article.

At diagnosis, most patients surveyed were offered minimal guidance - often just a suggestion to “look it up” - with detailed information rarely provided. As a result of this, patients and families often had to research CRPS on their own, relying heavily on online resources and support groups. One survey participant shares, “The doctor said ‘most people are managed by Gabapentin. Look it up online’. I had to research and learn on my own, for the most part”. 

Many healthcare providers lacked sufficient CRPS knowledge to answer questions and provide support to those newly diagnosed. Patients were forced to seek out specialists for themselves, and then educate their own providers.

Self-directed research in patient populations presents unique challenges. One significant issue is the lack of methodological precision, as patients conducting independent research may not have the training to critically evaluate sources, assess study quality, or distinguish between correlation and causation. Unfortunately, this may lead to misinformation and misinterpretation of medical literature.

A big concern is confirmation bias, this is where patients selectively seek information that aligns with their existing beliefs about their condition, potentially disregarding contrary evidence or alternative treatments.

Whilst it can be empowering to educate oneself, when no one else seems to have the answer, it may be problematic if done incorrectly. This is one of the primary reasons Burning Nights CRPS Support was formed as a charity - not only do we aspire to be a beacon of hope, we aim to be an accurate and trusted source of knowledge.

The point of diagnosis is a crucial moment for patients, and lacking information can lead to confusion, anxiety, and a feeling of isolation. It suggests that healthcare providers may need to improve their communication and support strategies to ensure patients receive the necessary information and resources when they are diagnosed. 

An average of 70.5% of people that responded to the #CRPSisreal survey, indicated that they received little to no information about their condition at the time of diagnosis. For instance, one survey participant said, “I’ve never been provided with information. This needs to change”. 

Although a minority (an average of 10.5%) reported receiving adequate information, meaning that a small fraction of patients felt they were properly informed about their condition at diagnosis. Another survey participant shares a successful encounter, “My healthcare providers provided me with a lot of information in the form of an activity book. The book had diagrams of the nervous system and explained why I felt what I was feeling”. 

Only an average of 19% of people indicated they received partial information, which implies that very few patients felt they had some level of understanding but not enough. For example, one survey participant says, “One doctor seemed knowledgeable about it and cared, whilst most others seemed not to believe as much about it or even know about it”.

In summary, the data from the 120 respondents reflects how the provision of information about CRPS helps newly-diagnosed patients come to terms with their condition. The lack of information creates additional challenges, with implications for their ongoing care and management.

Here are some helpful articles on Complex Regional Pain Syndrome (CRPS) that will provide information on its symptoms, causes, and management. Click the links below to learn more:

• ‘What Is CRPS and What Can We Do About It?’ - An infographic about CRPS, treatment options and general advice.
• ‘Don’t suffer in silence!’ - An article about Burning Nights CRPS Support’s Counselling Services for CRPS patients. 
• ‘A Friend In Need Is A Friend Indeed’ - An article about Burning Nights CRPS Support’s Virtual Befriending Scheme for CRPS patients.. 
• ‘Crafts, Cake-Making and Other Coping Strategies’ - An article about Burning Nights CRPS Support’s Self-Care Packs.
• ‘History of Complex Regional Pain Syndrome’ - Learn about CRPS throughout history!
• ‘Does physiotherapy help CRPS?’ - Early diagnosis and a treatment plan that includes physio exercises can be key to managing CRPS - learn more!

Here are some personal stories from individuals living with Complex Regional Pain Syndrome (CRPS). These experiences offer insight, support, and encouragement. Click the links below to read their journeys:

• ‘Living with CRPS - An Interview with Burning Nights' Founder Victoria Abbott-Fleming’ - Victoria’s reflection on 20 years of living with CRPS.
• ‘Life with CRPS, and experience of Zentangle’ - Karen’s reflection on living with CRPS and finding community in Burning Nights CRPS Support’s Zentangle Workshops.
• ‘Building Hope and Community Through Sport’ - Wheelchair basketball player and para rider, Inez, shares her experience of sport and CRPS
• ‘Using Calmare Scrambler Therapy to treat CRPS; Adam Cowan's Journey’ - The journey of young teen Adam Cowan, a CRPS warrior from Canada. 

Several key themes have emerged, from the #CRPSisreal survey responses, regarding research and information about CRPS at the point of diagnosis. A significant need for standardised information at diagnosis, improved healthcare provider education, more accessible and comprehensive research resources for both patients and families conducting research, and clearer pathways to finding knowledgeable specialists.

By implementing comprehensive educational resources and training programs, plus leveraging technology, healthcare professionals can significantly improve the dissemination of useful information and enhance patient care for those with CRPS.

Burning Nights CRPS Support educates healthcare professionals and students on Complex Regional Pain Syndrome (CRPS) through tailored workshops, information leaflets, and real-time support via our helpline and live chat ensuring they receive relevant, up-to-date and practical knowledge. Our goal is to bridge the CRPS education gap, enhancing patient care and support.