Guest Post: This post was contributed to the Positively Caring Blog by Burning Nights CRPS Support
Burning Nights CRPS Support was founded in September 2014 and became a registered charity in April 2016. At the time of it being set up, not a single UK charity or website existed that was dedicated to raising awareness and supporting people affected by a poorly understood nerve condition, Complex Regional Pain Syndrome (CRPS).
Burning Nights was founded by Victoria Abbott-Fleming, a CRPS sufferer who has needed both her legs amputated above the knee due to the aggressive nature of her symptoms of CRPS. Victoria found that there was insufficient and no support or awareness in the UK for CRPS and after she was given the news that her second leg was to be amputated, she decided that not only those living with CRPS needed help and support but also their loved ones, families, friends and carers. Victoria also realised that the majority of medical professionals did not seem to be aware that this condition even existed. Visit our Burning Nights CRPS Support story page to learn more about the charity and how we began.
Within only 3 months of starting, we were inundated with requests for help & support from not only people living in the UK but also international, so it was decided to become a charity. Charitable status was finally gained in April 2016. Now our charity is working to improve life for those living with Complex Regional Pain Syndrome (CRPS) and we provide some essential services, information and support to CRPS sufferers, their families, loved ones and carers, as well as to professionals in the health and legal fields.
We are self-funding and rely entirely on fundraising, donations and contributions. Burning Nights CRPS support operates a 100% donation policy. All members of the Burning Nights team work on a volunteer basis and are in the main CRPS sufferers ourselves and all are unpaid.
What is Complex Regional Pain Syndrome (CRPS)?
Complex Regional Pain Syndrome (CRPS) was formerly known as Reflex Sympathetic Dystrophy (RSD) and is a poorly understood condition which affects many people in the UK and across the globe. CRPS was first described in the 17th Century, however it was more commonly discussed during the American Civil War between the years 1861-1865 by Silas Weir Mitchell, an American Doctor who treated soldiers with nervous conditions or injuries. Visit our what is CRPS page to learn more about the history of this debilitating condition.
It is considered as a multi-systemic syndrome that is categorised by extreme and intense chronic pain that is out of proportion to the original injury or illness. CRPS can begin or affect any part of the body and can spread further from the original site.
CRPS can cause a person to experience persistent, severe and debilitating pain along with other symptoms. The condition may develop after an injury, surgery, stroke or heart attack, but the pain is out of proportion with the severity of the initial injury or trauma. Over 65% of cases are caused by soft tissue injuries. The cause of Complex Regional Pain Syndrome isn’t clearly understood and CRPS awareness in the UK is low. However the earlier a diagnosis of CRPS is given, the better the prognosis is for a patient.
CRPS is seen as one of the most painful chronic conditions in the world ranking 42 out of 50 on the McGill Pain Index, see below. View also NHS guidance on CRPS.
How common Is CRPS?
Complex Regional Pain Syndrome (CRPS) according to official research (de Mos 2007) affects 26.2 in 100,000which is 1 in 3,800 people in the UK. This figure equates to approximately 15,000 newly diagnosed CRPS cases every year, which doesn’t account for those who may have been undiagnosed or misdiagnosed.
CRPS occurs more in women than in men and research states that the average age of someone diagnosed with CRPS is approximately 43 years old. It can also occur in children and teenagers and the youngest ever patient recorded with CRPS was just 3 years of age. The prognosis in children and teenagers is better than in adults, but treatment must begin as soon as possible to achieve the best outcome.
How is CRPS diagnosed?
There is no specific clinical test for CRPS. Instead doctors must rely upon the Budapest Criteria which a diagnostic test, that takes into account the history of the patient, a physical examination and any other test results to rule out other possible reasons for the symptoms.
Treatments available for CRPS
There is no cure for Complex Regional Pain Syndrome (CRPS). Instead there are a number of treatmentsavailable to help manage symptoms of the condition.
Treatments include physiotherapy and occupational therapy, psychological therapy, medication, regional and lumbar blocks, neurostimulators, implants, alternative therapy and pain management programmes.
What support is there for those affected by CRPS?
Burning Nights CRPS Support will help anyone who is affected by this chronic and life-changing condition. As mentioned earlier, we offer a number of frontline, support and information services including:
- Telephone support and information helpline, manned by CRPS sufferers – the helpline is currently available in a limited capacity (01663 795055).
- Dedicated e-mail support system
- Comprehensive, evidence-based website containing information on CRPS, diagnosis, prognosis and potential treatments.
- 24/7 online community forum and social media presence.
- Range of information and awareness products designed to help people understand the effects of CRPS.
- Regular local support groups that provide support to individuals and families that are currently in Manchester and Bath/Bristol but we are hoping to expand these to other areas of the UK.
- Annual National conference with speakers working with and knowledge of CRPS and disabilities. The 2017 annual national CRPS conference is on 4th November at the Marriott Bexleyheath, Kent.
- CRPS awareness training sessions to professionals in the primary care and tertiary sector. These are essential to health professionals so that patients can be diagnosed quicker to enable treatment to start more rapidly.
- Attendance at exhibitions to raise the profile of the charity and raise awareness of CRPS.
- Access to legal support.
- Fundraising support which includes event awareness on our website, our e-newsletter and across our social media as well as limited awareness items.
- Provide interviews and volunteers for interviews in the media and on social media.
- Assist in CRPS research projects and surveys and help to provide volunteers.
If you would like any more information about Burning Nights CRPS Support, fundraising opportunities or you have been affected by this painful chronic condition, please contact us either by telephone on 01663 795055, email on [email protected] or visit our website.