This story from a person with CRPS was sent into us by her boyfriend who is also a psychologist. We are aware that many people with CRPS don’t do as well but we believe that if we can dissect some of the key treatment issues here, there can be benefits for many. Please ask any questions and provide comments. Note that the letter has not been touched by us and products used are not exclusively NOI.
I have RSD/CRPS. I have a disease that has been pronounced as incurable. Yet, there is still hope. In 2009, I was first diagnosed with RSD/CRPS after I broke my left ankle at work. Within 6 weeks, the condition spread through my left leg and to my right leg. I was soon without the use of my legs and ever reliant upon a wheelchair for mobility.
A month later while receiving treatments, the RSD/CRPS spread to my right arm and to my left arm due to the use of an IV. My legs had been previously curled by dystonia, but now my arms were also tightly curled into my chest. I was completely dependent upon a caregiver for the basic aspects of life. Eating, bathing, brushing my teeth was nearly impossible had it not been for my caregivers.
Through vigorous treatments, including ketamine infusion, and a radical lifestyle change (to an anti-inflammatory diet), I slowly was going into remission. In June 2011, I was in remission from a battle with RSD/CRPS that took all of my functional abilities from me.
Nearly a year later, I was in a city thousands of miles from home, pursuing higher education, and preparing for the first race since becoming ill. I was determined to run a 5K race to celebrate being in remission for a year to celebrate the use of my arms and my legs and to celebrate life.
Half way through this race, the world slowed down and I felt the pain I had not had for nearly a year. It is a pain like nothing else; like your body being consumed by a raging fire. It was obvious- I reinjured and came out of remission. The nightmare that I had previously lived was now coming back to haunt me in my waking hours.
Immediately, we began the previous treatments. It was not working. And worst yet, my insurance was again refusing to cover the costs of the much needed treatment. I was soon losing my ability to walk and use of my right arm. My body twitched. My legs changed color and were swelling. Sudden sensory impulses like lights and sounds triggered a flare-up. The horrific symptoms of RSD/CRPS were coming back again.
Although I do have full body RSD/CRPS, it is predominantly in my right arm and left leg. During a major flare, my other extremities would flare as well. Both of my feet would curl slightly and my right arm would curl as well.
Meanwhile, James, my wonderful boyfriend, was in the process of researching any types of treatment he could. In between graduate school and internships, he spent innumerable hours researching treatments for his ailing girlfriend. He contacted doctors, called researchers, and was my lifeline to new treatments.
Enter Graded Motor Imagery.
At this point, I had lived with the beast for nearly 3 years and never heard of GMI. After reading the research, I decided to buy the book, mirror box, and apps for my smartphone. And I was shocked. In the past, insurance refused to pay for most of my treatments and medical bills. Therefore, I was used to seeing a treatment cost anywhere between a thousand to ten thousand US dollars. This treatment, however, was to be less than two hundred US dollars.
I wish I could say that the moment I started this 5-6 month treatment I got better. However, that was not the case. I continued with GMI, doing each stage every 30minutes, for all waking hours. I had an alarm set on my phone that refused to let me forget.
As I was progressing through these stages of Graded Motor Imagery, there was still pain. When I moved on to the context part for the left/right discrimination, I flared with certain images. James suggested that I desensitize these images by going through the motion of the image without any direct pain inflicted. For example, I imagined my fingers playing on a piano with ketchup being poured on top. This worked well.
It is important to note that throughout these four months, while the RSD/CRPS was progressively getting worse, I maintained with the Graded Motor Imagery program. The right/left discrimination scores were between 90%-100% and the time between 1.6 to 1.4 seconds. On my smartphone, I had an alarm that would sound every thirty minutes to continue with the current stage of Graded Motor Imagery. Often times, with the high pain levels, I needed encouragement and support to persist with this treatment. Having loved ones involved in the process, both for encouragement and accountability, was critical.
About four months into this process, I was still getting progressively worse. Until one day, I was unable to walk or use my right arm at all. My parents made an emergency trip to come and bring me back to their home so I could have a caregiver around the clock.
I called my RSD/CRPS doctor and had scheduled a treatment that would place me in the ICU for nearly a week. And worse yet, the insurance company still refused to pay. I continued with the GMI treatment throughout this time period.
Nearly three week prior to this treatment, I entered into the mirror box stage of GMI. James had previously built a mirror box for me. However, I found that a floor length cheap mirror worked the best for seeing all of my leg and my affected arm. Within the span of a few days, there was a sharp decrease in my pain (from a 9 to a 2 on a scale of 1 to 10). I could hardly believe it. A few days later, I was pain free.
I called my RSD/CRPS specialist and he was ecstatic on the phone. We cancelled my ICU treatment. Over the next several weeks, the flare-ups that occurred had an identifiable cause and soon settled down.
Wherever I go, I bring the mirror box with me now everywhere. I continued to do the mirror box at least five times daily and the left/right discrimination once a day to maintain the scores.
The RSD/CRPS pain occasionally returns due to a stimuli, but is located in only my right hand and left foot with the score of a 3 out of a 10. Stimuli, like having blood drawn from my medi-port, does produce a flare-up which subsides by the end of the night. Occasionally, I have flu-like heaviness in my body, but not the RSD/CRPS type of pain.
As a full-body RSD/CRPS patient, it has been wonderful to have a treatment that I could control. I was responsible for continuing the treatment, day in and day out. With a disease that removes control from the patient, having a treatment like this helped to maintain a sense of control and predictability over the disease. Emotionally, this was such a wonderful feeling!
Like anyone else with a chronic disease, having a treatment that you do not have to deal with insurance companies for is a feat in and of itself. Compared with my other treatments, this is extremely affordable. I held the helm of my treatment protocol within my own hands. Where I decided to steer the ship, is the destination in which I would arrive. This experience has been very empowering.
Although I know that healing is a process, I am so very thankful that we were able to find this treatment. To all who have done research, thank you from the bottom of my heart. I am able to type and write again. I am able to walk again. I have the use of my body with very little to no pain on a day to day basis. I have life again. What could be better?
What are the key points that you have taken from this story?
As a clinician, what would you have done differently?
How would you implement crisis management?
What would you recommend for this patient in the future?