Resources for Patients with CRPS/RSD and Chronic Pain
Written by Melissa Wardlaw for the RSDSA blog.
In my work as a CRPS/RSD, Chronic Illness & Pain Peer Counselor/Advocate, many patients contact me for assistance and support – particularly those who are newly diagnosed. After speaking with CRPS patients, I usually send them a list of resources they may find useful.
As we all know, there is a lot of propaganda online about CRPS, and navigating the web or “Dr. Google” can be a very scary thing sometimes. Unfortunately most physicians are unfamiliar with CRPS, so in lieu of asking them for advice, sometimes we have no choice but to turn to the web or our peers to try and find out all we can about the disease.
Below I have pasted some links to resources I have found helpful over the years for newly diagnosed CRPS/RSD patients, as well as those who have been dealing with CRPS/RSD and chronic pain for any length of time.
RSDSA & RSDHope Articles & Resources
RSDSA (www.rsds.insctest1.com) is the leading national organization on CRPS/RSD and one of its kind. Both of these organizations provide unparalleled information and support for CRPS/RSD patients. You can also sign up for the RSDSA newsletter. Although RSDHope (www.rsdhope.org) is no longer in active operation, the information remains on their website as a courtesy to patients.
“You’ve Been Diagnosed With CRPS/RSD. Now What?”
https://rsds.insctest1.com/youve-been-diagnosed-with-crpsrsd-now-what/
CRPS/RSD Informational Brochure
https://rsds.insctest1.com/wp-content/uploads/2016/02/2016-CRPS-Brochure-FINAL.pdf
Beginners Guide to CRPS and RSD
http://www.rsdhope.org/beginners-guide-to-crps-or-rsd.html
Letter to Families and Friends of CRPS or RSDS Patients
http://www.rsdhope.org/letter-to-families-and-friends-of-crps-or-rsds-patients.html
“15 Tips For Healthcare Providers Treating CRPS/RSD” (self-promotion here!)
https://rsds.insctest1.com/15-tips-healthcare-providers-treating-crps/
Articles from “The Mighty”
You can sign up for multiple categories including CRPS/RSD and have articles sent directly to you each week – you can even sign up to be a contributor yourself!
“To the Patient Who Just Received a Complex Regional Pain Syndrome Diagnosis”
https://themighty.com/2016/06/receiving-a-complex-regional-pain-syndrome-diagnosis/
“What It’s Like Living With Complex Regional Pain Syndrome, the ‘Suicide Disease’”
https://themighty.com/2016/11/what-its-like-living-with-complex-regional-pain-syndrome/
“A Letter to My Former Self, Before I Became Ill”
https://themighty.com/2017/04/letter-to-former-healthier-self-before-illness/
“6 Things I Would Tell Myself When I Was First Diagnosed With CRPS/RSD” (self promotion here!)
https://themighty.com/2018/08/just-diagnosed-with-crps-rsd-what-to-know/
“8 Questions to Ask Your Doctor Before an Invasive Medical Procedure” (self promotion here!)
https://themighty.com/2018/11/what-to-ask-doctor-before-medical-procedure-surgery/
YouTube Channels/Videos
RSDSA Channel
https://www.youtube.com/user/RSDSAofAmerica
The CRPS Network Channel
https://www.youtube.com/channel/UC14_uvWYUavFccvfys9pchQ
CRPS Forum Channel
https://www.youtube.com/channel/UCG-uLJBTP3nbg29yntHRWfA
Conspiracies Against Wellness Channel
https://www.youtube.com/channel/UCci1m071vRL-aOZmEfTd1Ew
“Treating the Whole Person – RSDSA” Video
“The Other Side of Opioids” Video
“What we Lose When We Undertreat Pain” – TedTalk Video by Kate Nicholson
“Trial By Fire” CRPS Documentary
“The Painful Truth” PBS Chronic Pain Documentary
https://www.pbs.org/video/painful-truth-painful-truth/
Blogs
You can sign up for most of these blogs to receive articles and content daily or weekly
“Tips on How to Handle CRPS”
http://nationalpainreport.com/tips-on-how-to-handle-crps-8839756.html
“My Top 5 Strategies for Dealing with a CRPS/RSD Flare” (self-promotion here!)
http://nationalpainreport.com/my-top-5-strategies-for-dealing-with-a-crps-rsd-flare-8836017.html
“Learning Acceptance for CRPS/RSD & Chronic Pain”
http://www.burningnightscrps.org/acceptance-for-crps-rsd-chronic-pain/
“How to Practice Mindfulness for your CRPS/RSD”
https://www.burningnightscrps.org/mindfulness-for-crps-rsd/
“So You’ve Been Diagnosed With RSD and/or CRPS…What Now?”
http://www.tamingthebeast.ca/so-you%27ve-been-diagnosed-with-rsd-and-or-crps-what-now.html
Motivational Blog – Multiple articles on chronic illnesses/pain
https://www.psychologytoday.com/blog/turning-straw-gold
CRPS/RSD Blog
https://abodyofhope.wordpress.com/crpsrsd/
“A Letter From Your CRPS”
https://tearsoftruth.com/2016/06/08/a-letter-from-your-crps/
Additional Resources & Links
Many of these resources have newsletters or programs for which you can sign up to receive additional articles and content
Articles about CRPS/RSD – Practical Pain Management
https://www.practicalpainmanagement.com/pain/neuropathic/crps
“Putting Out The Flames Of Complex Regional Pain Syndrome – Updated Guide to CRPS/RSD”
http://princessinthetower.org/complex-regional-pan-syndrome-crpsrsd/
“How to Cope with Flare-Ups & Setbacks of Chronic Pain – With Tools to Help You Recover”
http://princessinthetower.org/category/heal/cope/anxiety/
“Living With CRPS”
https://medium.com/pain-talks/living-with-crps-79269afc11fd
“A Letter To Those Newly Diagnosed With RSD/CRPS”
“Finding a CRPS/RSD Specialist”
http://www.thblack.com/links/RSD/specialists.htm
“Treating Reflex Sympathetic Dystrophy (RSD)”
https://www.drgetson.com/treatment-for-rsd.html
“7 Chronic Illness Podcasts To Get You Through The Day”
https://www.women.com/kelleyobrien/lists/chronic-illness-podcasts-102118
“Staying Connected With Friends While Ill”
https://www.prohealth.com/library/staying-connected-with-friends-while-ill-42803
U.S. Pain Foundation
https://uspainfoundation.org/living-with-pain/
American Chronic Pain Association
https://www.theacpa.org/pain-management-tools/the-art-of-pain-management/living-with-pain/
Chronic Cow
For Grace – Foundation specifically for women with chronic pain started by Cynthia Touissant, who has had CRPS for 36 years!
http://www.forgrace.org/women-pain/101-ideas-to-empower-women/
Pain News Network
https://www.painnewsnetwork.org/resources
“The 7 Psychological Stages of Chronic Pain”
https://www.painnewsnetwork.org/stories/2015/9/13/the-7-psychological-stages-of-chronic-pain-illness
“The Top Pain-Fighting Vitamins”
https://www.everydayhealth.com/pain-management/the-top-pain-fighting-vitamins.aspx
“5 Ways to Live Well with Chronic Pain and Illness”
“Complex Regional Pain Syndrome: It’s Complicated”
The Spoon Theory
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
“Systemic Complications of Complex Regional Pain Syndrome”
http://file.scirp.org/Html/22695.html
Hopefully some of these resources will prove to be worthwhile as you navigate your way through being newly diagnosed with CRPS/RSD and chronic pain (or even living with it for many years). I always recommend joining a few groups on Facebook as well. It’s beneficial to be a part of a few large national groups online, and also small local ones (if available in your area) to meet others in person if possible. I would be interested to know other resources you all have found too!
Take care on your journey and GodSpeed, my fellow Chronic Illness and Pain Warriors!
Melissa Wardlaw was diagnosed with CRPS/RSD as a result of a spinal cord injury (non-paralyzing) suffered during a routine medical procedure. She also suffers from fibromyalgia, lumbar and cervical degenerative disc disease, migraines and additional chronic medical issues. Formerly a Business Executive/Consultant with an MBA in Entrepreneurship, she is also a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer counseling/advocacy (pro bono) to those dealing with similar medical struggles. As a fierce advocate, she also runs both in-person and online support/empowerment groups for CRPS/RSD and chronic illnesses/pain in the Metro Atlanta area. A “fur mom” to two cats, Melissa is an avid volunteer and supports multiple organizations committed to rescuing animals and helping those with chronic illnesses/pain. She can be reached at crpsatl@gmail.com.
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