Written by Laura Swan, LMFT for the RSDSA blog.
How and when did you develop CRPS/RSD?
In 2003, a physician did a shockwave procedure on my elbow. I was on workers’ comp for a repetitive strain injury and neck pain. She diagnosed tennis elbow despite my previous doctor saying thoracic outlet syndrome (TOS). Even with a nerve block I felt it hit the bone. I screamed so much that they gave me a full anesthetic. Within 36 hours, my arm was swollen and mottled. My hand was cold and blue. My pain level went off the charts and I could barely use my right arm (of course I am right handed). I switched doctors immediately and was diagnosed with CRPS and TOS. It took me another three years to have surgeries so the CRPS moved into both arms and my neck. The surgeries also consisted of sympathectomies to manage CRPS.
What has daily life been like since your diagnosis?
Life was horrible dealing with pain and depression. I could not use my right arm. The pain level was so debilitating that I developed depression as I could not work. I felt I had nothing to offer the world. I needed help with many things, could not have a baby at that time, and I had to go through the trauma of workers’ comp. After three years, I had two surgeries to decompress TOS and with a sympathectomy on each side to manage the CRPS. These surgeries were extremely painful, but successful in that my right arm was no longer discolored. I could use my hand more and my hand was warm. But I was left with nerve damage and a strong tremor in my right arm due to the shockwave therapy.
My recovery was hard with acupuncture, physical therapy, and psychotherapy. I was reliant upon pain meds to manage my symptoms and found that the fentanyl patches worked well for me. I was able to have a baby and had to adapt many things as my arm strength was weak. I wore a brace on my right hand to stop the cramps and to limit the shaking from my tremor. When the laws were changed regarding opioid medication, I researched spinal cord stimulators. Due to a very messy divorce and returning to graduate school, I had two spinal cord stimulators implanted in 2018. I had to have revisions as one broke when I was attacked (the leads fractured and could not be removed).
Now I have two spinal cord stimulators with four ports. One is cervical (arms, neck, jaw pain) and one is lumbar (lower back, CRPS in legs/feet and bulging discs from the attack). My cervical device changed my life. My pain was reduced and flare ups were less intense, shorter and more infrequent. My tremor has greatly subsided and I ultimately stopped needing fentanyl patches. My lumbar has been less successful and the CRPS is in both legs, feet and knees. I deal with moderate pain (with flare ups) daily and still need medication to manage this. I continue to live in hope that I can keep this managed and not let it take away my ability to walk.
Professionally, I had to take time off but I eventually graduated with a Masters in Counseling Psychology and I am now a Licensed Marriage and Family Therapist in California. I work in a high school in a therapeutic program and hope to open my own practice soon for evening only clients. I continue to manage my CRPS with meds and the spinal cord stimulators. Self-care is essential! I have worked with chronic pain clients before and this will be the focus of my own practice as there are few clinicians who understand chronic pain and its impact on all aspects of your life.
What is one thing you wish those without CRPS/RSD could understand?
I wish others would stop the “you look fine,” “you hide it so well,” ”you did this before, why can’t you now” comments. Ultimately, we are NOT faking this. Fighting CRPS is exhausting. I am frequently exhausted by work and then cooking or going out. People also do not understand that there is no cure and please stop suggesting PT, acupuncture, etc. as I have done it all and having two spinal cord stimulators should indicate that nothing works anymore.
What advice would you give to newly diagnosed Warriors?
Taking care of your mental heath is paramount as is finding a doctor who understands CRPS. I found support groups to be helpful and a safe space to share your feelings.
Also share with your doctor if you are struggling with depression, insomnia, or suicidal ideation. Please do not feel ashamed for these feelings. This disease is known as the suicide disease and there were times when I thought that ending my life was the only way to escape the pain.
Fortunately I put myself on a voluntary 5150 hold once, had medication stabilization, and then found a great therapist. My depression passed and I currently no longer need medication. If you are in a dark place please use 988 or use these suicide resources:
Suicide and Crisis Hotline 24/7: Santa Clara County – 1 855 278 4204
Substance Use Services: Santa Clara County – 1 800 704 0900
Crisis Text Line – 741741
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
CRPS can go into remission. For my arms/neck/jaw I say it is in remission. My arms are still weak, but the tremor is mostly gone and I can do many things that I thought I would never do again.
Please find support groups as it is helpful finding others on the same journey online. Also please find a therapist who understands chronic pain to keep your mental health strong.
What activities or treatments have helped you find temporary or long term relief?
I cannot say enough about my spinal cord stimulators. It took three revisions (plus two implants and two trials) but the cervical device lowered my pain level by 80%. Acupuncture, heat, TENS, and aquatic PT really help. Mindfulness and meditation help manage pain, stress and improve sleep.
Anything else you would like to add?
CRPS is an unwelcome visitor in your life. Taking care of yourself and advocating for your own needs is essential. You know your body and your condition the most, so please do not let doctors dismiss you. You are your expert. CRPS can be managed and can go into remission. Adapting to living with an invisible disability is a long road. Ask for help when you need it at airports, etc. And also consider having disabled plates on your car.