Golden Graine is not just for those living with chronic migraine, it’s for anyone dealing with chronic pain. We are all in the same boat. Feeling misunderstood, wanting others to take the time to listen. For this Medical Monday, I want to talk about a condition called Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). These two terms are often used interchangeably.
“Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area” (as defined by the NIH).
I met Heather Gilmore in 2016 through the US Pain Foundation. Heather has CRPS. If I hadn’t taken the time to understand her condition, I wouldn’t have been able to share it with my dad when I suspected he had the same condition after shoulder surgery. I’m so grateful that Heather was there to answer our questions when my dad experienced severe allodynia, sensations of pin and needles, swelling and changing skin color in his hand and arm after surgery. Most people relate the pain to feeling like the affected area is on fire. Sometimes even the slightest breeze across the skin can cause severe pain.
Heather recently wrote an amazing letter to others who live with the same condition. Even if you don’t have CRPS, her words will resonate with you. Thanks to Heather for letting me share her letter with you.
A Letter to those with CRPS / RSD
CRPS / RSD & Chronic Pain Awareness:
To my fellow Warriors (Patients, Caregivers, and Medical Professionals), as well as to family, friends, acquaintances, and social media networks, this is a “letter” per say to explain what it’s like being diagnosed and having the closest people in your life not understand. Your Warrior tribe becomes some of your closest and dearest friends because they understand.
No one can imagine what it’s like to live with CRPS / RSD or any type of chronic pain unless they have it. Most of the time, if you happen to also have an invisible illness like this, you feel that the “normals” in your life can’t cope, understand, or simply attempt to empathize with you. Rather it’s the opposite! They want answers! They want a cure! They see you as being lazy! They give unwarranted advice! They attempt to treat! They don’t believe that the pain is that severe/intense! They abandon! They judge! They make assumptions! However, the truth of the matter is that “they” simply feel helpless!
Could we as Warriors be more patient? Sure! Can we recognize that they just want to help? Yes! Should we appreciate rather that instead of being quick to anger? Yes! Is it frustrating? Hell yeah! If someone fighting a more visible illness says, “I have ________!” individuals are always there, supporting, and offering unconditional love and understanding. So why is it different for us? Again, it’s that they aren’t familiar and don’t understand. So, Warriors, we need to be patient, kind, and educators.
While this illness changes Warriors’ lives drastically, we gain more than we ever expected! Individual relationships often get lost BUT we gain a community of supporters also known as Warriors. Out of that support, we create friendships, families, bonds, understanding, empathy, laughter, love, deep connections, interpersonal relationships that are quickly built and maintained, and so much more! We celebrate little and big positive moments together (going to a Dr. appt, being at a child’s school program, attending events, or simply getting out of bed)! All the while we empathize bad days, hospital stays, surgeries, hurt feelings, and much, much more.
While I HATE this illness more than anyone, I am beyond blessed to have had the most amazing support, the medical Dream Team, a part of wonderful and helpful organizations, and have met the most beautiful souls I’m lucky enough to call friends and others family!
So, I simply ask that everyone SHARE this post to make others AWARE because the key to finding a CURE begins with a simple AWARENESS about it!
~ Dr. Heather Gilmore
If you want to learn more about CRPS/RSD and support groups, visit the Resources tab under Chronic Pain.