CURE CRPS Foundation, Inc.

The CURE CRPS Foundation and the associated Taskforces and Focus Groups will be be phasing out of using these and other social media platforms and will instead host these functions on our own servers. The blog and focus groups will be on cureCRPS.net and cure CRPS.org so that patients who are not active on social media can take part in the work we are doing to help all people with CRPS. The important polls we have conducted within the social groups will be transitioned over ...to Survey Monkey where people around the world who are living with CRPS can benefit from the social science built which give proof to efficacy of treatment protocol for patients by patients. By moving off of this platform we can also ensure that everyone living with CRPS with an internet connection irregardless of political affiliation has a voice and help and access to the work while preserving their privacy. Our website is rather rudimentary currently because we have spent a great deal of organizing within this and other available platforms however we will be slowly transitioning off of all third party platforms so that the bulk of the content and communication between patients is hosted on our own site where user privacy will be tightly controlled and managed by patients for patients and immune to arbitrary standards by an unelected unaffiliated party. Unfortunately Facebook and Instagram and twitter other media outlets are interfering with the flow of information and that means information including the latest studies and science cannot reach patients. These organizations have altered news feed algorithms which interfere with our ability to effectively advocate and communicate with one another. The only way we can change this is by hosting these activities on our own platform. These groups will be slowly phased out to contain only links to the site external to Facebook over the next 3 months. If you would like to help volunteer to help in this effort of porting over data from our three Sociual networks to our servers, please email us directly at [email protected]. Love and light to all who are living with CRPS. We will never give up the fight. We are just moving our efforts to our own platform which is a powerful move in the right direction for sustainability scalability and integrity.

The pain of CRPS/ RSD/ Causalgia is more disabling and intense then amputation, unprepared childbirth, MS, cancer, third degree burns.(mcGill Pain Index, 1971) The pain of CRPS is not psychogenic in origin. CRPS pain is due to aberrant specialization of neural and glial cells in the peripheral system and mutations to smooth muscle epithelial cells of the veins microcappilaries and lymphatic ducts as well as functional changes to bone, skin, nail beds according to post amputa...tion studies, post mortem exams and core tissue biopsies. CRPS pain is rooted in the body but can cause global changes to the bodies pain system. The constant pain of CRPS can cause significant upstream changes altering neural function. If left untreated CRPS can advance to create change of function mutations in the peripheral and central nervous systems which then cause downstream changes to tissues in other parts of the body. (CRPS spread) The pain of CRPS is perhaps one of the most painful in existance, on par with spinal cord injury, terminal bone cancer and other severe physical trauma. Treating CRPS requires treating the pain using a multimodal protocol to slow disease progression and reduce disability index. Patients with CRPS/RSD/Causalgia are owed palliative care because CRPS is incurable. You can share this pain index with your treating physician