CRPS Info and Resources

**PLEASE NOTE THIS IS FOR INFORMATIONAL PURPOSES ONLY. IF YOU FEEL YOU OR A LOVED ONE HAS CRPS OR YOU WANT MORE INFORMATION ON ANY OF THIS INFORMATION YOU SHOULD ALWAYS CONSULT WITH YOUR DOCTOR**

CRPS stands for Complex Regional Pain Syndrome and is a condition where the Central Nervous System becomes sensitized.  People with CRPS experience a wide range of symptoms and there is no easy, one size fits all, treatment for CRPS.  CRPS is not a new or very rare disease.  It was first diagnosed in the US during the Civil War in the 1850s. 

CRPS is also known as Reflex Sympathetic Dystrophy (RSD) and was previously called Causalgia as well. There are also some doctors that will diagnose Reflex Neurovascular Dystrophy (RND) in some cases Amplified Musculoskeletal Pain Syndrome (AMPS) may also be used, although this is not always synonymous with CRPS.  CRPS is known as the suicide disease as suicide is the leading cause of death among people with CRPS.  Feeling connected and knowing you aren't alone as you fight this battle is very important.

Ferocious Fighters is here to make sure that kids with CRPS, whatever name is used in diagnosis, know that they are not alone, however, we are just one of many great organizations out there that all have wonderful information and resources about CRPS.

WHAT ARE THE SYMPTOMS OF CRPS?

  • CRPS is characterized by pain that is out of the normal for the injury.
  • Most cases are developed after a minor injury (such as a sprain) and continues to get worse instead of better.
  • One of the Major Signs of Complex Regional Pain Syndrome is Allydonia, which is a high sensitivity to touch. If you can imagine a Feather touching your skin, but it feeling like a blowtorch instead...that is Allydonia.
  • Additionally, the area is likely to swell, exhibit a color change (red or purple or mottled in appearance) and be COLD to the touch.
  • The Pain Feels "like being coated in dry ice, wrapped in barb wire, and set on fire" according to our founder, Patrick.

Organizations

CRPS/RSD Foundation - Canada - Patients and advocates dedicated to helping others get a better quality of life.  They run a 24/7 support line and are trained in suicide prevention. 

RSDSA - RSDSA's mission is to provide support, education, and hope to all affected by the pain and disability of CRPS/RSD, while we drive research to develop better treatments and a cure. 

Note From Meg:  They have a WONDERFUL brochure for schools regarding CRPS that we highly suggest for anyone worried about how to address their student's needs at the school level. We highly recommend checking out their website and connecting with this great organization.

TCAPP - The Coalition Against Pediatric Pain is a national non-profit committed to improving the quality of life of children living with chronic pain from rare diseases by: supporting and uniting families affected by pediatric pain, advocating for children in pain by increasing awareness of their needs, educating others regarding their long-term consequences of pediatric pain, funding research dedicated to pediatric pain conditions and providing resources to families and professionals.

Note From Meg:  This group is amazing and provides support for kids with any pain condition, not just CRPS/RSD, although they were founded by CRPS/RSD families.  You can find great resources, connections, and even an AMAZING camp that they do each summer for kids with pain.  We haven't been able to go yet but are hoping to do it next summer!  Make sure you check these guys out and get connected!

U.S. Pain Foundation - mission is

 to educate, connect, inform and empower those living with pain while also advocating on 
behalf of the entire pain community. 
As a 501 (c)3 non-profit organization dedicated to serving those who live with pain conditions and their care providers, U.S. Pain Foundation helps individuals find resources and inspiration.

Note From Meg: This group is a big picture group that is impactful in the areas of advocacy and awareness.  This is a group that is great to plug into if you are ready to play an active role in spreading the word or if you have become passionate about making an impact on policy at the government level.  

Videos


Over the years, some of our kids have been invited to speak about CRPS or have made videos about CRPS.  Sometimes, hearing it from a kiddo is really impactful.  As we go forward, we will try to add those videos here:

Going to School With CRPS


You may have heard of Dr. Chopra - he is a very well respected pain doctor and this presentation is about pain conditions in children.  It is very interesting and really helped to clarify some things for me as I learned more and more through our journey.  Dr. Chopra's Presentation