Noijam exist for discussion between health professionals – we can’t answer specific questions from patients. But sometimes we receive stories which contains powerful clinical messages, in this particular letter, about the power of the brain.
Please add your stories too, about the power of the brain in relation to extreme sensitivity.
– David Butler
Previous patient comment:
“My name is Alicia Ellis. I was in a major car accident at the age of 12. I fractured my wrist and required an ORIF. I was unable to move my thumb and a second surgery was required. In 2004, I accidentally hit my wrist on a counter edge. That progressed into my hand being diagnosed with “RSD”. It took a year to fully recover. The only issues I had, was that it was easily fatigued and I had some fasciculations at times. My right hand, has been diagnosed with CRPS (again) approx. 1 year ago. The journey, began in September of 2012. I had a nagging pain in my right index finger. As the month progressed, the pain got increasingly worse and limited the use of the finger. October 1, while at work, I was writhing in pain and it became more difficult to complete my tasks. I proceeded to the ER, with the hope of getting a diagnosis and pain relief. I had a x-Ray done and the physician informed me, that there is a bone spur at the DIP joint of the index finger. I was given toradol, which helped moderately. I then was given a referral to see a Surgeon. At that appointment, he mentioned, that the x-Ray showed a volar plate injury. I was fitted with a splint, which helped to decrease some of the pain. As the month progressed, the pain got increasingly worse, with a few trips to the ER. A few months later, I saw a Rheumatologist who suggested the possibility of CRPS. He was not sure as I had a few blisters on my hand. It wasn’t until January of 2013, that CRPS became the official diagnosis (post a couple bone scans). The pain was incredibly overwhelming. My entire world was about “pain”. I gave up interest in activities, I loved to do. I gave it power and relinquished all control. Pain dictated my every move. Fear and avoidance, are crippling as well. Then, depression joined the party. I have been attending a chronic pain clinic since March of 2013. There has been a lot of ups and downs. Sometimes, I wanted to just cut of my hand hehe (as that would not make things worse). I remember, during the assessment of my ‘left and right discrimination’, my brain was so confused. I felt every card was my left hand. Since then, I have improved greatly. The brain is truly amazing. Watching others use their hands, can be so painful at times. Visualization of my hand being static or in motion, can leave me writhing in pain. I am learning to be more patient and how to manage the pain. I have been working at taking back the control I relinquished. I remember, a cousin of mine said to me, “you have to look the enemy [pain], in the eye and not blink”. It was, and still has been so powerful as I continue to recover. I am learning a lot about chronic pain and the intricacies of the brain. I enjoy reading “noi notes” and “noi jams”. I chuckle to myself at times, reading some of the articles, as I feel, they are describing my journey. For example, the article on pain as “emergent”. I use the “recognise” app as well. I have improved greatly, with an average of 90% on the left! and 82% on the right. My accuracy can vary at times (mental health, lack of sleep etc), especially during flare ups. I look back and this experience has been, far more severe than back in ’04-05. I had no idea, that there was a possibility, that It could reappear. Thank you, for the amazing work from the NOI group.”
Thank you Alicia,
Many thanks Alicia,
You may like to know that just 10 years ago, comments like “if I imagine my hands moving I writhe in pain” would made many health professionals think that the person was crazy, even hysterical. Of course, modern neuroscience, for example that related to mirror neurones, neuroplasticity and the incredible protective behaviour of the brain makes such comments make sense.
We would be very interested in your GMI experiences. Was it easy to get going? Did you have enough support and what would have made the process easier?
I have been very lucky, to have had clinicians who have heard of CRPS, but also understand its’ complicated nature. Interestingly, September will be the 10 year anniversary, of the original experience with CRPS. At that time, i had no knowledge of GMI and I did not realize, the brains involvement. Now, I have an understanding of the importance of the name change, from RSD. It seems is more of a ‘central’ problem, with localized symptoms.
Lifemark (chronic pain clinic), my family and friends, have been very supportive. I am very thankful and I consider myself lucky as well. There have been times, where I just wanted to give up. I did not want to suffer in pain anymore. I felt helpless and hopeless. However, my extensive support network kept me afloat. I cannot stress, the importance of a strong and cohesive support network. It is VITAL! At times, i do feel “crazy” explaining CRPS to people. I am not sure, if my experiences (with healthcare professionals) would have been different, if all the symptoms were invisible?
My GMI experience is ongoing. I am still undergoing treatment at Lifemark. I started out with the laterality cards and the mirror box. It took me a couple months to get the hang of it and it became more tolerable. I had a difficult time with left/right discrimination. I am right handed, which is also the affected side. So, I thought most of the images were left. I felt really confused and I was somewhat embarrassed, of how poorly I did on my assessment. I needed a lot of reassurance, that it was ok and things will get better. I was very fragile. The mirror box was rather daunting. I started out with my left hand being still and gradually increasing the complexity of the movements. It was incredibly painful. I experienced flare-ups, that rendered me powerless. It took months, for the whole experience to become tolerable. The mirror box therapy, was stopped for a couple of months, due to blisters on my hand; the pain worsened. Over the last 5-6 months, we have been working on explicit motor imagery. It was extremely intense. At the same time, I started to practice left/right discrimination on the computer. My brain was sensory overloaded. I flared up, for about a week; then over the next month, it became slightly less intense. The therapists, suggested starting the visualization on my left side. I started out, with tapping my left foot on the floor. I was shocked, that I was only able to tolerate 5mins. I have gradually worked my way to the right side, which has been very challenging. I find the pain is more severe, with imagining my hand in motion. I have also, started to become more aware of other people using their hands. I find this challenging as well. At times, my brain gets flooded with the images replicating over and over. Then, my hand starts to overreact and it takes all my strength and will power, to be able to bring into awareness, something less threatening. Even the use of , my left hand can cause my pain to increase, if it is brought into awareness accidentally. I enjoy watching the NFL on Sundays. On one Sunday, I tried to follow various hands across the field. It became exceedingly painful and I had a difficult time stopping the input signal. Presently, we have been working with paraffin wax on my left hand and wrapped in a towel, utilizing the mirror box. The therapists, then performs passive ROM on the left, while I watch in the mirror. So far, it has been tolerable.
Pertaining to left/right discrimination, the physiotherapist explained that it should feel as if I am guessing the images. Prior to that, I tried to do it as fast as I could. But, I had times where I would have to stop and think first. It seemed very odd to be guessing. At first, my scores would be as low as 40-60s. However, I became increasingly faster and more accurate week by week. Depending on the level of pain, sleep, stress etc then the scores may vary. I find at times, I will think the image is the left hand, however I will choose right instead, and vice versa.
What would have made things easier? That is an interesting question. I was not able to draw upon, the previous experience with CRPS. The two experiences, have been so different. This time around, it has been extremely severe. The research on CRPS and the treatment thereof, have changed substantially (I believe), compared to 10 years ago. Would it have made a difference, if there was an orientation class on CRPS and the treatments employed? Perhaps, but I am not sure if my responses to the above treatments would have been different. I do believe however, that my preconceived ideas, believes and past experiences of pain, has been challenged throughout this entire experience. Maybe, if I had thought of pain as being ’emergent’, perhaps my pain pathway would have been different? In addition, I have had numerous setbacks…uncontrolled pain, heightened sensitivity to temperature, swelling, stiffness, touch, mechanical stimulation, vasomotor symptoms etc, months of inactivity (hand), lack of sleep, trigger points/mayo fascial pain, recurrent blisters. It has been nonstop, it seems (at times). A case of Murphy’s law. Would it have made a difference if the initial presentation of symptoms, resembled CRPS? Maybe, the earlier diagnosis would have led to earlier treatment? Would my outcome be more favourable?
Maybe, a slower progression of laterality-EMI-mirror box initially? Difficult to say really. Earlier on, I had a difficult time pacing. I wanted to go back to when I was healthy. I kept looking back; grieving the multitude of losses, I felt I had loss. Perhaps, I unintentionally instigated a few of the flare-ups I have endured…could I have set myself back?
Lately, I have been thinking that being able to understand CRPS as a maladaptive process of the brain, would make a difference prior to being exposed to GMI. It was infuriating, that the visualization of my hand would be mind-numbingly painful. I am still trying to comprehend it all. Brain feels convoluted and cloudy a lot. I presently struggle with, being impatient. I will think I am grounded in my resolve, and then I will go through a flare-up; then I hit a low and it is increasingly difficult to get back to previous level of mental wellness (pre-flare). In addition to, previous level of physical progress. It is definitely character building! PATIENCE and PERSISTENCE! Appreciating progress without judgement, no matter how small it may be. I have gotten better at, not only assessing the physical progress (hand); thinking of progress wholistically. It is easy to be single-minded.
Hopefully, I have provided more insight on my experiences with GMI. Looking forward to your feedback.
Ps. I would love to attend of the NOI workshops. Please consider Edmonton in the near future. There are lot of chronic pain patients.