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A quick resource guide for CRPS patients, families, and caregivers
Getting diagnosed with complex regional pain syndrome (CRPS) can lead to complicated feelings. You might be glad to have a diagnosis, but unsure of what it means. Here are some resources for patients and families to help you access the support you need if you’re facing this challenging and complex condition.
Resources for patients in crisis
CRPS is sometimes referred to as the “suicide disease.” Patients may feel helpless and hopeless, but it’s important to know that there is help available. If you are having thoughts of self-harm, or a loved one is exhibiting signs of suicidal ideation, call 911 or contact one of these hotlines.
National Suicide & Crisis Lifeline (U.S.) – 988
This is a 24/7 free, confidential support line for people in emotional distress or suicidal crisis.
- How to access: Dial 988 for voice, or visit org to chat.
CRPS is associated with a high emotional burden; immediate support can be life-saving.
Crisis Text Line – Text “HOPELINE” to 741741
This resource offers 24/7 text-based crisis counseling.
- How to access: Text HOPELINE to 741741 (U.S.).
Text resources provide a quick, easy access lifeline for help during pain flares or moments of panic. Remember that if you’re in immediate danger, call 911.
National CRPS organizations for education, community, and programs
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
RSDSA was founded in 1984, making it the oldest U.S. nonprofit focused on CRPS/RSD. The organization offers patient and caregiver education; hosts conferences across the U.S.; helps create peer connections; and advocates for patients. It also has a Patient Assistance Fund. The RSDSA can connect families to others through events like runs or walks, support groups, and conferences. They also list state-specific support resources on their website. You can contact them for more information.
Attorney Bryan Pope serves on RSDSA’s Board of Directors.
American RSDHope
American RSDHope is another national nonprofit dedicated to CRPS (the condition was formerly referred to as “reflex sympathetic dystrophy” or “RSD”). It was established in 1995 and is dedicated to awareness and education. RSDHope provides patient family education, support groups, awareness programs, and has a Hope for Tomorrow Research Fund.
Caregiver-specific resources
Caregivers provide vital support for those struggling with CRPS. Those tasked with caring for loved ones can often do better with a roadmap and peer support. Having this network and community behind caregivers also improves outcomes for patients. Here are some caregiver-focused resources.
RSDSA – Resources for Caregivers
The RSDSA provides articles, videos, and links to support spouses, parents, and friends of individuals with CRPS. Caregivers can attend webinars with expert panels and talks by clinicians. They also have a Facebook caregiver group, grant info, and practical tips for daily living and setting boundaries.
Burning Nights: For Loved Ones and Caregivers
Burning Nights is a UK-based organization focused on supporting people with CRPS. Their site connects families with counselors, therapists, and other families facing this challenging medical condition.
Pediatric CRPS support
Children might be less likely to suffer from CRPS, but when they do experience this condition, they need the support of their families, professionals, and the CRPS community. Here are some resources specifically aimed at families supporting children with CRPS.
TCAPP – The Coalition Against Pediatric Pain
The Coalition Against Pediatric Pain (TCAPP) supports children with chronic pain conditions, including CRPS. It offers community, advocacy, and programs that bring joy and hope – like family camp experiences, online groups, and crisis support. TCAPP helps kids experiencing chronic pain, and their parents, feel less alone. The organization started in 2011 and has now served over 1,000 families nationwide.
Children’s Health – Pediatric Pain Management Center
This organization has informational resources for families and provides interdisciplinary evaluation and treatment for children and teens with chronic pain, including CRPS. They have a network of pediatric pain specialists, including physical and occupational therapists, psychologists, and others who can help provide comprehensive treatment.
U.S. Pain Foundation - Pediatric Pain Warrior Program
The U.S. Pain Foundation’s Pediatric Pain Warrior Program offers support for children living with chronic pain and their families. The organization has summer camps, retreats, and other events, including workshops and speakers, that provide valuable information while fostering a community.
Rare-disease & broad chronic-pain advocacy
CRPS is a rare condition that can make it more challenging for patients and their families to get information and support. There are organizations dedicated to rare diseases and disorders that also offer help to those with CRPS. By combining forces, those with rare conditions like CRPS can have a larger impact on issues like policy, research, and resources.
The National Organization for Rare Disorders
This organization offers education, policy input, and patient advocacy for individuals facing rare diseases. They provide patient and caregiver toolkits, rare-disease news, and community programs.
U.S. Pain Foundation
This national nonprofit provides resources for people living with chronic pain. The site can help families find peer support groups, train advocates, and provide pain-management education. Many with CRPS can benefit from strategies and symptom management techniques that also offer relief to others who are experiencing chronic pain.
Financial & practical assistance
There are resources that offer funding for families facing financial hardship due to CRPS. Here are two funds offered through the RSDSA.
TJ Whalen Patient Assistance Fund
This one-time charitable grant offers assistance for patients for non-emergency costs, like home accessibility improvements, work training, college expenses, or home care services.
You can apply for this grant using this form.
Jenkins Patient Assistance Fund
The RSDSA also offers emergency funds through this grant, which offers up to $1,000. In the past, this grant provided help with payments to prevent utility shut-offs, travel costs for individuals who needed to see out-of-state pain specialists, pain psychologist payments when insurers refused to pay, and more.
You can access the form for this fund here.
Anyone who wishes to support these funds can visit the RSDSA’s donation page to make a tax-deductible donation.
Research & clinical trials
Patients with CRPS may benefit from taking part in clinical trials.
ClinicalTrials.gov (NIH)
You can search the site to find ongoing studies on CRPS. These may investigate the effectiveness of medications, neuromodulation, rehabilitation, and other potential treatments. You can filter your search for studies on complex regional pain syndrome to those in specific locations, with active recruiting status, and in the appropriate age group.
Media & storytelling
Trial by Fire is a documentary about CRPS that tells real stories of those living with the condition. A sequel to the documentary is in the works, and Bryan Pope is featured in that film, offering his insights on CRPS.
Legal resources
When someone’s negligence leads to trauma that causes CRPS, there may be legal options for the injured person. You can learn more about the legal process and filing a lawsuit for CRPS on our site or by reaching out to discuss your injuries during a free consultation. We’re here to support and advocate for those with CRPS.