Healing for David- CRPS & Adversity
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Introduction
In 2015, I developed a severe autonomic nervous system disorder called Complex Regional Pain Syndrome (CRPS Type 2) which among many things, causes extreme disabling pain. After exhausting all medical interventions that are available to me through industrial medicine and considering the lack of prospective treatments in the future, I have resolved to seek out an immersive healing experience provided by a traditional healer who lives outside of Iquitos, Peru. This fundraiser has been created to garner a portion of the funds necessary for travel and treatment at this healing center. I understand that my writing has a tendency to be very thorough largely to alleviate any questions or concerns of the readership (and so this is a little long!), but I have tried to write this for a broad audience and I have labeled the sections for you to be able to find the parts in which you may be most interested.
(All sources are cited in Chicago 16th Author-Date format)
What is Complex Regional Pain Syndrome (CRPS)?
Usually when we get hurt and feel pain our biology has an ingenious way of figuring out how painful an injury should feel and importantly when that pain should subside. This nuanced mechanism that determines the intensity of pain that the body feels from tissue trauma is called the Diffuse Noxious Inhibitory Control (DNIC). Essentially, it is believed that my condition is precipitated by a failure of the DNIC in response to a nerve injury, thus my body has lost the ability to regulate or turn off the pain signal resulting in a constellation of symptoms that make up something called Complex Regional Pain Syndrome (Schwartzman, Alexander, Grothusen 2006). This is a disorder that is considered a systemic failure involving not only pain signaling, but the peripheral nervous system, central nervous system, as well as the immune system (Bruehl 2010). The hallmark features of CRPS include drastic color and temperature changes in the skin of the affected limbs, swelling, abnormal sweating, general autonomic nervous system dysregulation, tremors, and dystonia.
Since this illness involves a pathophysiology of the brain and spinal cord (Bruehl 2010; Shokouhi 2017) it is not uncommon for the pain to mirror bilaterally after the condition begins damage to nerves in the spinal cord, many times affecting the opposite limb or spreading to other parts of the body (Bruehl 2010; Wu 2002), which is true in my case even from very early on.
How painful is CRPS and how does it affect me?
Due to physiological changes that happen to pain projecting neurons throughout my body, especially in the spinal cord, CRPS causes supraphysiological levels of pain, meaning that someone who is sick with CRPS has developed a deviant nervous system that produces pain signals that would not typically be possible in a healthy individual (Wolf 2000). This disorder is considered to be among the most painful diseases known to science claiming the highest score on the McGill University Pain Index (Lee 2014). A peer-reviewed study published in Psychiatric Investigation found that up to 74.4% of people with CRPS were at high risk for suicide and 20%, or one in five, had attempted suicide at least one time (Lee 2014).
This disease has rendered me unable to participate in most basic activities and makes even getting dressed and showering difficult. At first I would rarely leave my house even spending days in bed biting down on my blankets and pillows in perpetual agony. It would sincerely be difficult to overstate the pain of CRPS and the toll that it takes on the mind and body. I used to have dreams of becoming a successful artist and I worked hard in art school to learn how to paint. Since my condition affects both of my hands it was impossible for me to paint even with my left hand and performing anything that resembles most physical activity is out of the question for me now as even conservative movements can cause extreme pain. In reality, it is difficult to perform almost any work and I require assistance with most things including daily chores like cooking and cleaning my room. I live with my grandmother and I am dependent on her to help me with most things, even opening bags, cereal boxes or buttoning my shirts.
After much confusion and visiting innumerable doctors I was officially diagnosed with CRPS in May 2016 and my pain management specialist after giving me an unfavorable prognosis had encouraged me to find purpose and meaning in life. He said that although there were no viable treatments available having purpose would do more for me than any medication or healthcare strategy that we could try.
Since then, I have worked hard with multiple vocational rehabilitation services and although we have been unsuccessful at my return to work they agreed that the pursuit of education was the best path for me right now. I currently receive significant assistance from both vocational rehabilitation and the adaptive educational services at school to make my coursework possible at Indiana University Purdue University Indianapolis (IUPUI). I am completely reliant on voice dictation software to control my computer and complete my assignments (which is how I am writing/editing this document now). I also receive assistant note-takers, scribes for tests, and some reasonable extensions for in-class assignments so that I may do them with my software at home in my own time. It is my hope that I will beat the odds and my condition will go into remission so that more options will open up for me, but even if this is not the case I am determined that a career in ethnography doing such things as informal interviews, writing papers and books, etc. will be more accessible to me.
(Below is a video of me trying to move the fingers in my right hand)
What interventions have I tried?
CRPS is considered notoriously recalcitrant and despite the many interventions attempted, patients typically find such little relief if any (Bruehl 2010). These listed below have had little or no effect, many times even exacerbating my condition.
Spinal cord stimulator implant
Numerous vitamins and supplements
Multiple chiropractors and kinesthesiologists
Nerve pain medications including: Anti-convulsants, Tricyclic antidepressants, Sodium channel blockers, NMDA Antagonists etc.
Various steroids including oral and injected
Series of stellate ganglion nerve blocks
Ketamine infusion
Series of ketamine injections
Anti-inflammatory shots
Intravenous Fentanyl & Dilaudid
Oral Hydromorphone, Hydrocodone, oxycodone, etc.
What about future prospective treatments?
As it stands, there are no FDA approved treatments for any type of CRPS although, there are currently trials around the world testing out a new drug called Neridronic acid which belongs to a well-studied class of compounds called Amino bisphosphonates (Schnitzer 2017). There is a small clinical research trial performed in Italy that has led some researchers and pharmaceutical companies believe that bisphosphonates may help a version of CRPS (Type I) in cases where the condition is maintained by an improperly healed bone fracture (Schnitzer 2017). Bisphosphonates are designed to increase bone remodeling and repair therefore in some instances it hypothetically may treat CRPS after resolving bone abnormalities (Schnitzer 2017).
In a surprising turn of events I was accepted into a study at Northwestern University this past summer where I received four infusions of this drug. It was virtually identical to a drug that I had received for several months before hand known as Alendronic Acid. Although I had not responded to the Alendronate I still thought it best to give the new drug an effort, driving frequently to Chicago for infusions and lab testing. Unfortunately, the CRPS specialist who I had to traveled to Philadelphia to visit, Dr. Enrique Aradillas, was certain that I have CRPS type II where the condition is caused by a nerve lesion. In my case, this is a neuroma on the dorsal sensory branch of my radial nerve. It is believed that my version of CRPS does not have anything to do with my bones or a bone injury and this is most likely why I did not respond to either bisphosphonate drug. There are no doctors, pharmaceutical companies, or scientific literature that suggests that bisphosphonates may treat CRPS type II and unfortunately these are the only drugs being currently evaluated for this condition. My point in taking the time to explain this is that it is very unlikely that there will be any drug or treatment developed for CRPS in the foreseeable future.
My Plans for Healing:
It has been almost 3 years since I suffered a relatively minor injury that developed into this severe autonomic nervous system disorder, effectively devastating my life. I have been frustrated and dissatisfied with medical treatment that has been less than adequate. At this point it seems as though there is not much more that can be offered to me. I have exhausted the expertise of every doctor that I have seen thus far and I do not know how much time I have spent in vein on the phone calling neurology departments, rheumatologists, pain management specialists etc. trying to find someone that may be able to help. Essentially, any intervention that I have left to try would be tens or hundreds of thousands of dollars up front in out of pocket costs and would be experimental or very similar to interventions I have tried before.
Despite this, I have not lost all hope and I am resolved to overcome my pain. According to many reports there are a disproportionate number of pharmaceutical medicines that are derived from ingredients found in the rain forest especially when considering the relatively small amount of plants that have been evaluated for their therapeutic potential (Torrence 2012). After considering the advice of several experts and centers in the Amazon they all referred me to the same healing center outside of Iquitos, Peru. This facility is owned and operated by a man who has over 30 years of experience, originating from his childhood, working with the thousands of plants in the Amazon. I have studied much of the academic literature surrounding Tribal Ecological Knowledge (TEK) and traditional medicine in the Amazon as it happens to be one of my primary interest in school. I even recently received a couple of scholarships based on my proposals to specialize in this sub-field of anthropology and this would be an excellent opportunity both for my well-being and for my future academic endeavors.
What will this path to healing involve?
This curandero (healer) who is revered throughout the region, has some of the most impresive results from his diets and many people travel from around the world to study under him as students. For research and human subjects purposes his name will be spared at least from this fundraiser campaign as I plan on using my experience, in part, for my own future academic interest. The healing process will involve strictly regimented protocols involving dietary and behavioral proscriptions as well as regularly consuming specifically prepared plant medicine. It is my aim to raise enough money to stay for as much time as possible during this coming summer. The longer that I am able to stay the better chance that I will have to allow the healer the opportunity to cure my condition. I feel that this is the most hopeful and logical option that I have left and it is also the most reasonable as far as expenses. It is something that I have wanted to do since the very beginning, but I wanted to first give industrial medicine a collegiate effort until I felt that all reasonable interventions have been exhausted.
Works Cited
Bruehl, S. 2010. “An Update on the Pathophysiology of Complex Regional Pain Syndrome.” Anesthesiology 113: 713-25. doi:10.1097/ALN.0b013e3181e3db38
Lee, D., et al. 2014. “Risk Factors for Suicidal Ideation Among Patients with Complex Regional Pain Syndrome.” Psychiatry Investigation 11 (1): 32-8. doi: https://doi.org/10.4306/pi.2014.11.1.32.
Torrence, Paul. 2012. “Owed to Nature: Medicines from Tropical Forests.” RainForest Trust website, January 2013. Accessed on 4/28/2018 Https://www.rainforesttrust.org/news/owed-to-nature-medicines-from-tropical-forests/
Schnitzer, T. 2017. “Open-Label Safety Trial of Intravenous Neridronic Acid in Subjects with Complex Regional Pain Syndrome (CRPS).” Ongoing clinical research trial supported by Grünenthal GmbH, Aachen, Germany. 1-18.
Schwartzman, R., Alexander, G., and Grothusen J. 2006. “Pathophysiology of Complex Regional Pain Syndrome”. Expert Review of Neurotherapeutics 6: 669-81.
Shokouhi, Mahsa et al. 2017. “Structural and Functional Brain Changes at Early and Late Stages of Complex Regional Pain Syndrome. The Journal of Pain 19 (2): 146 – 57. doi: 10.1016/j.jpain.2017.09.007
Woolf, C. & Salter, M. 2000. “Neuronal Plasticity: Increasing the Gain in Pain.” Science 288: 1765-9.
Wu G, Ringkamp M, et al. 2002. “Degeneration of Myelinated Efferent Fibers Induces Spontaneous Activity in Uninjured C-fiber Afferents”. The Journal of Neuroscience 22: 7746-53.
In 2015, I developed a severe autonomic nervous system disorder called Complex Regional Pain Syndrome (CRPS Type 2) which among many things, causes extreme disabling pain. After exhausting all medical interventions that are available to me through industrial medicine and considering the lack of prospective treatments in the future, I have resolved to seek out an immersive healing experience provided by a traditional healer who lives outside of Iquitos, Peru. This fundraiser has been created to garner a portion of the funds necessary for travel and treatment at this healing center. I understand that my writing has a tendency to be very thorough largely to alleviate any questions or concerns of the readership (and so this is a little long!), but I have tried to write this for a broad audience and I have labeled the sections for you to be able to find the parts in which you may be most interested.
(All sources are cited in Chicago 16th Author-Date format)
What is Complex Regional Pain Syndrome (CRPS)?
Usually when we get hurt and feel pain our biology has an ingenious way of figuring out how painful an injury should feel and importantly when that pain should subside. This nuanced mechanism that determines the intensity of pain that the body feels from tissue trauma is called the Diffuse Noxious Inhibitory Control (DNIC). Essentially, it is believed that my condition is precipitated by a failure of the DNIC in response to a nerve injury, thus my body has lost the ability to regulate or turn off the pain signal resulting in a constellation of symptoms that make up something called Complex Regional Pain Syndrome (Schwartzman, Alexander, Grothusen 2006). This is a disorder that is considered a systemic failure involving not only pain signaling, but the peripheral nervous system, central nervous system, as well as the immune system (Bruehl 2010). The hallmark features of CRPS include drastic color and temperature changes in the skin of the affected limbs, swelling, abnormal sweating, general autonomic nervous system dysregulation, tremors, and dystonia.
Since this illness involves a pathophysiology of the brain and spinal cord (Bruehl 2010; Shokouhi 2017) it is not uncommon for the pain to mirror bilaterally after the condition begins damage to nerves in the spinal cord, many times affecting the opposite limb or spreading to other parts of the body (Bruehl 2010; Wu 2002), which is true in my case even from very early on.
How painful is CRPS and how does it affect me?
Due to physiological changes that happen to pain projecting neurons throughout my body, especially in the spinal cord, CRPS causes supraphysiological levels of pain, meaning that someone who is sick with CRPS has developed a deviant nervous system that produces pain signals that would not typically be possible in a healthy individual (Wolf 2000). This disorder is considered to be among the most painful diseases known to science claiming the highest score on the McGill University Pain Index (Lee 2014). A peer-reviewed study published in Psychiatric Investigation found that up to 74.4% of people with CRPS were at high risk for suicide and 20%, or one in five, had attempted suicide at least one time (Lee 2014).
This disease has rendered me unable to participate in most basic activities and makes even getting dressed and showering difficult. At first I would rarely leave my house even spending days in bed biting down on my blankets and pillows in perpetual agony. It would sincerely be difficult to overstate the pain of CRPS and the toll that it takes on the mind and body. I used to have dreams of becoming a successful artist and I worked hard in art school to learn how to paint. Since my condition affects both of my hands it was impossible for me to paint even with my left hand and performing anything that resembles most physical activity is out of the question for me now as even conservative movements can cause extreme pain. In reality, it is difficult to perform almost any work and I require assistance with most things including daily chores like cooking and cleaning my room. I live with my grandmother and I am dependent on her to help me with most things, even opening bags, cereal boxes or buttoning my shirts.
After much confusion and visiting innumerable doctors I was officially diagnosed with CRPS in May 2016 and my pain management specialist after giving me an unfavorable prognosis had encouraged me to find purpose and meaning in life. He said that although there were no viable treatments available having purpose would do more for me than any medication or healthcare strategy that we could try.
Since then, I have worked hard with multiple vocational rehabilitation services and although we have been unsuccessful at my return to work they agreed that the pursuit of education was the best path for me right now. I currently receive significant assistance from both vocational rehabilitation and the adaptive educational services at school to make my coursework possible at Indiana University Purdue University Indianapolis (IUPUI). I am completely reliant on voice dictation software to control my computer and complete my assignments (which is how I am writing/editing this document now). I also receive assistant note-takers, scribes for tests, and some reasonable extensions for in-class assignments so that I may do them with my software at home in my own time. It is my hope that I will beat the odds and my condition will go into remission so that more options will open up for me, but even if this is not the case I am determined that a career in ethnography doing such things as informal interviews, writing papers and books, etc. will be more accessible to me.
(Below is a video of me trying to move the fingers in my right hand)
What interventions have I tried?
CRPS is considered notoriously recalcitrant and despite the many interventions attempted, patients typically find such little relief if any (Bruehl 2010). These listed below have had little or no effect, many times even exacerbating my condition.
Spinal cord stimulator implant
Numerous vitamins and supplements
Multiple chiropractors and kinesthesiologists
Nerve pain medications including: Anti-convulsants, Tricyclic antidepressants, Sodium channel blockers, NMDA Antagonists etc.
Various steroids including oral and injected
Series of stellate ganglion nerve blocks
Ketamine infusion
Series of ketamine injections
Anti-inflammatory shots
Intravenous Fentanyl & Dilaudid
Oral Hydromorphone, Hydrocodone, oxycodone, etc.
What about future prospective treatments?
As it stands, there are no FDA approved treatments for any type of CRPS although, there are currently trials around the world testing out a new drug called Neridronic acid which belongs to a well-studied class of compounds called Amino bisphosphonates (Schnitzer 2017). There is a small clinical research trial performed in Italy that has led some researchers and pharmaceutical companies believe that bisphosphonates may help a version of CRPS (Type I) in cases where the condition is maintained by an improperly healed bone fracture (Schnitzer 2017). Bisphosphonates are designed to increase bone remodeling and repair therefore in some instances it hypothetically may treat CRPS after resolving bone abnormalities (Schnitzer 2017).
In a surprising turn of events I was accepted into a study at Northwestern University this past summer where I received four infusions of this drug. It was virtually identical to a drug that I had received for several months before hand known as Alendronic Acid. Although I had not responded to the Alendronate I still thought it best to give the new drug an effort, driving frequently to Chicago for infusions and lab testing. Unfortunately, the CRPS specialist who I had to traveled to Philadelphia to visit, Dr. Enrique Aradillas, was certain that I have CRPS type II where the condition is caused by a nerve lesion. In my case, this is a neuroma on the dorsal sensory branch of my radial nerve. It is believed that my version of CRPS does not have anything to do with my bones or a bone injury and this is most likely why I did not respond to either bisphosphonate drug. There are no doctors, pharmaceutical companies, or scientific literature that suggests that bisphosphonates may treat CRPS type II and unfortunately these are the only drugs being currently evaluated for this condition. My point in taking the time to explain this is that it is very unlikely that there will be any drug or treatment developed for CRPS in the foreseeable future.
My Plans for Healing:
It has been almost 3 years since I suffered a relatively minor injury that developed into this severe autonomic nervous system disorder, effectively devastating my life. I have been frustrated and dissatisfied with medical treatment that has been less than adequate. At this point it seems as though there is not much more that can be offered to me. I have exhausted the expertise of every doctor that I have seen thus far and I do not know how much time I have spent in vein on the phone calling neurology departments, rheumatologists, pain management specialists etc. trying to find someone that may be able to help. Essentially, any intervention that I have left to try would be tens or hundreds of thousands of dollars up front in out of pocket costs and would be experimental or very similar to interventions I have tried before.
Despite this, I have not lost all hope and I am resolved to overcome my pain. According to many reports there are a disproportionate number of pharmaceutical medicines that are derived from ingredients found in the rain forest especially when considering the relatively small amount of plants that have been evaluated for their therapeutic potential (Torrence 2012). After considering the advice of several experts and centers in the Amazon they all referred me to the same healing center outside of Iquitos, Peru. This facility is owned and operated by a man who has over 30 years of experience, originating from his childhood, working with the thousands of plants in the Amazon. I have studied much of the academic literature surrounding Tribal Ecological Knowledge (TEK) and traditional medicine in the Amazon as it happens to be one of my primary interest in school. I even recently received a couple of scholarships based on my proposals to specialize in this sub-field of anthropology and this would be an excellent opportunity both for my well-being and for my future academic endeavors.
What will this path to healing involve?
This curandero (healer) who is revered throughout the region, has some of the most impresive results from his diets and many people travel from around the world to study under him as students. For research and human subjects purposes his name will be spared at least from this fundraiser campaign as I plan on using my experience, in part, for my own future academic interest. The healing process will involve strictly regimented protocols involving dietary and behavioral proscriptions as well as regularly consuming specifically prepared plant medicine. It is my aim to raise enough money to stay for as much time as possible during this coming summer. The longer that I am able to stay the better chance that I will have to allow the healer the opportunity to cure my condition. I feel that this is the most hopeful and logical option that I have left and it is also the most reasonable as far as expenses. It is something that I have wanted to do since the very beginning, but I wanted to first give industrial medicine a collegiate effort until I felt that all reasonable interventions have been exhausted.
Works Cited
Bruehl, S. 2010. “An Update on the Pathophysiology of Complex Regional Pain Syndrome.” Anesthesiology 113: 713-25. doi:10.1097/ALN.0b013e3181e3db38
Lee, D., et al. 2014. “Risk Factors for Suicidal Ideation Among Patients with Complex Regional Pain Syndrome.” Psychiatry Investigation 11 (1): 32-8. doi: https://doi.org/10.4306/pi.2014.11.1.32.
Torrence, Paul. 2012. “Owed to Nature: Medicines from Tropical Forests.” RainForest Trust website, January 2013. Accessed on 4/28/2018 Https://www.rainforesttrust.org/news/owed-to-nature-medicines-from-tropical-forests/
Schnitzer, T. 2017. “Open-Label Safety Trial of Intravenous Neridronic Acid in Subjects with Complex Regional Pain Syndrome (CRPS).” Ongoing clinical research trial supported by Grünenthal GmbH, Aachen, Germany. 1-18.
Schwartzman, R., Alexander, G., and Grothusen J. 2006. “Pathophysiology of Complex Regional Pain Syndrome”. Expert Review of Neurotherapeutics 6: 669-81.
Shokouhi, Mahsa et al. 2017. “Structural and Functional Brain Changes at Early and Late Stages of Complex Regional Pain Syndrome. The Journal of Pain 19 (2): 146 – 57. doi: 10.1016/j.jpain.2017.09.007
Woolf, C. & Salter, M. 2000. “Neuronal Plasticity: Increasing the Gain in Pain.” Science 288: 1765-9.
Wu G, Ringkamp M, et al. 2002. “Degeneration of Myelinated Efferent Fibers Induces Spontaneous Activity in Uninjured C-fiber Afferents”. The Journal of Neuroscience 22: 7746-53.
Organizer
David Mahurin
Organizer
Indianapolis, IN