Supporting People with Complex Regional Pain Syndrome
CRPS UK is a patient led organisation for people with Complex Regional Pain Syndrome, their family and friends and anyone working within the healthcare system. We offer support, education, produce literature, assist with research and raise awareness of CRPS.
We became a registered charity in February 2016, we have been working hard ever since and have achieved a great deal in this short time. CRPS UK is run mainly by volunteers many of whom have CRPS. Aside from the core team, we are fortunate to have a wider group of volunteers, some of which have CRPS, some who have a loved one with the condition and others who have an interest in supporting people with it. They assist us at events held throughout the year and kindly offer time and support where needed.
CRPS UK is primarily focused on helping people with CRPS. One way we aim to do this, is by providing a supportive environment in which people can find out about CRPS and get in touch with a community of people who know what they are going through. You can get to know others with CRPS here and join us at events.
What is CRPS?
Complex Regional Pain Syndrome (CRPS, also known as Reflex Sympathetic Dystrophy, RSD) is an uncommon condition, historically first observed during the American civil war, and was then called Causalgia. It has been known as many names but is now called Complex Regional Pain Syndrome in the UK.
Complex Regional Pain Syndrome (CRPS) is an uncommon neurological disorder, which causes chronic pain that cannot be controlled and can affect all areas of the body but most commonly occurs in the limbs. CRPS is usually triggered by a minor injury such as a sprain, broken/fractured bones, surgery or can appear spontaneously without known cause.
It is characterised by severe pain, swelling, temperature and colour changes and motor dysfunction. CRPS pain continues long after the original injury has healed. In order to be diagnosed specific criteria are used by clinicians:
It is a debilitating and disabling condition, which for some can be life changing.
CRPS is poorly understood and a cause has not yet been found, although there are some promising areas of research. It is generally agreed that the body produces a faulty response to an injury where normal inflammatory responses such as pain, swelling and temperature changes do not stop once the damage is repaired. This leads to a ‘feedback loop’ within the nervous system making the body more sensitive to pain. It is not known why some people get CRPS and others do not.
CRPS is difficult to treat but a multi-disciplinary approach is considered to be the best treatment alongside medication to limit the effects of CRPS. Ongoing research is taking place globally to develop better medications and treatments for CRPS.
CRPS is believed to be the result of dysfunction in the central and/or peripheral nervous systems, where the signals between the affected limb or body part and the brain are misinterpreted, resulting in the following:
- “burning” pain.
- hypersensitivity of the skin.
- changes in skin temperature: warmer or cooler compared to the opposite extremity.
- changes in skin colour: often blotchy, purple, pale, or red.
- changes in skin texture: shiny and thin, and sometimes excessively sweaty.
- changes in nail and hair growth patterns.
- swelling and stiffness in affected joints.
- motor disability, with decreased ability to move the affected body part.
CRPS can strike anyone at any age and affects both men and women.
CONTACT CRPS UK
If you have any queries or would like to contact us please email email@example.com we’d love to hear from you.
If you would like to be kept up to date with upcoming events, research (and how to take part), news and much more, please email firstname.lastname@example.org to be added to our database.
Due to data protection regulations we can only add people to our mailing list who have specifically opted in to this. If you would like to receive our emails and be kept up to date, you should say this in your enquiry. If you do not provide permission for us to email, we will not be able to update you on our news and events.
If you have CRPS and would like to be added to our private Facebook forum so you can meet (virtually) and chat with others with the condition, click here
We also have public social media pages where we post about news, events and interesting articles.
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