Supporting CRPS UK Charity

Supporting CRPS UK Charity

In April I am running the London Marathon supporting CRPS UK Charity and UP. The aim is to raise awareness of the work being done to change the problem of pain and to raise money to support this work. I will be writing blogs about CRPS, pain, CRPS UK and UP, as well as posting links to important research over the next few months in the build up to the run.

You can support me by clicking here

What is CRPS? Complex Regional Pain Syndrome ~ For a simple guide, click here

From CRPS UK:

CRPS UK is a registered charity focused on helping people with Complex Regional Pain Syndrome (CRPS) to live the best lives they can. The charity was set up by four people who have CRPS to provide a support system to others with the condition. We aim to do this 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 via our very active closed Facebook group. This serves to allow people to speak with confidence and privacy about any concerns they may have, thus supplying a huge support network. We have already held successful conferences and regional meet ups. For many this is the first time they have met anyone else with the condition. These social opportunities help to break down the isolation often experienced with a chronic health condition.

Specialist treatment can be the key to lessening the impact of CRPS and helping people with CRPS to live rich and fulfilling lives. We are working with specialist treatment centres to provide a grant scheme for patients with CRPS who are experiencing financial difficulty, to help them to afford travel expenses to and from hospital. This will ensure that they can access the treatment they need. Currently this is only for travel costs for those receiving treatment at the RNHRD/RUH in Bath, but we aim to roll this out in the future to other units specialising in CRPS.

Going forward we also aim to improve diagnosis and treatment of CRPS. We will be promoting awareness and education about CRPS in healthcare professions, which should lead to more patients receiving timely diagnosis and intervention. This will be through the production of healthcare leaflets and presentations via direct contact.

Complex Regional Pain Syndrome (CRPS) is a rare 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. It is a debilitating and disabling inflammatory condition that can be caused by minor injury (sprain), broken/fractured bones, surgery or can appear spontaneously without known cause.

CRPS is believed to be the result of dysfunction in the central 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, but statistics show it is more common in women.

Very little is known or understood about CRPS and there is no cure.

For further information, you can contact CRPS UK here

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