By James W. Broatch. MSW, RSDSA Executive Vice President, Director
Earlier this summer, RSDSA conducted a short survey of the RSDSA community asking individuals with Complex Regional Pain Syndrome (CRPS) what practices, medications, i.e. what is helping you to minimize your CRPS. In other words, as John Lennon said, “what is getting you thru the night?” As CRPS is the only medical condition with complex as its first word, a caution, whatever works for someone else may not be helpful to you. We received many, many replies. I’m sending a warm thank you to all who participated. Today, I would like to share a few responses. Email me at [email protected] with minimizing pain in the subject line and I’ll send you all of the replies.
Sandy Stoll Miller shared, “not much minimizes my pain. I figure I’m going to be in pain doing nothing or if I’m doing something…I decided to get a Harley Davidson a few years back and I ride to desensitize my nerves and (it) helps to take my mind off it.” Her mantra, “stay active regardless of the pain and reflect on what you accomplished instead of what you didn’t.” Sandy also mentioned movement in water as “her biggest source of non-medicinal relief.” Gentle exercise in warm water was mentioned numerous times by others as a way to move. KEEPING MOVING was a frequent refrain.
Linda Davis participated in the Functional Restoration Program at the Bay Area Pain and Wellness in Los Gatos and “it changed her life. I was given the tools (‘profound psychological, physical, nutritional, wellness and daily lessons to distract my thought pattern’) to turn my life around 180 degrees….I use every tool I was taught to live with not against my pain.”
Cindy Caserta utilizes “prayer and faith in God, exercise and physical therapy, and getting out of bed every morning, getting dressed & actively participating in my day, no matter how difficult it is or how long it takes. I keep to a loose schedule & work on my daily goals.”
Dawn Giddings discovered that “having a hobby or something to be passionate about is healing. Art is my way of focusing on something other than my pain. When I’m creating a new sketchbook, stitching on an art quilt, drawing graphite portraits or painting, I get into the ‘zone’ and even though the pain is there, it gets pushed to the background.”
Steven Glover shared “out of all that I’ve have done, I would say the ketamine infusions gave the most relief, but they were never a permanent solution, as they only lasted anywhere from 4 to 6 months….One thing that intrigued me was what I had read about Panax Ginseng. In short, here I’m; currently into my Ginseng treatment and I can honestly tell you that my pain score has dropped from a daily 8-9 to a measly 2-3. I’m off all of my prescribed medications and I’m feeling terrific.”
Duane Satterfield reported that he utilized Suboxone to avoid withdrawal while transitioning to a pain pump. “I had NO withdrawals at all! I was terrified of stopping the Opioids!! A book called ‘The Secret’ has helped me to reprogram my brain to be positive. I highly recommend it.”
Many individuals mentioned changing their diet. Tracy Kozikowski changed her diet to “whole foods, no processed food diet. Eating a plant-based diet minimizes the inflammation which was huge in fighting RSD pain. I was amazed.”
Medical cannabis. CDB oil. Ginger. Turmeric root. LDN…… So many helpful remedies were mentioned.
One of my mantras in my life is the only thing you can control is your attitude; embracing that, I would like to end with a very positive quote from Beverly Hinds.
“I try to be positive for little things, the wind, the birds, new dawning, 2 hours with no burning, the laugher of grandchild, hug from my supportive husband, and talk about the pain, sometimes talk back to the pain. My faith gives me courage, my family is my cheerleaders, think it could be much worse. Live in the moment, never give up.”
Amen! A special thank you to Sammie Anderson who compiled these suggestions! Please remember, email me at [email protected] with minimizing pain in the subject line and I’ll send you all of the replies.