Category: Guest Blogger for RSDSA

Written by Guest Blogger Alessia Zen

A story of living with CRPS (the struggles and triumphs), the hope for the future, and what the community truly needs.

Ever the dreamer as an eleven year old little girl I wrote my life goals on a yellow post-it note, proudly signing it with juvenile cursive writing- in my mind by signing with a “signature” this became official just like a real-life grown up. I wrote that I was going to become a doctor/archaeologist (emphasis on the slash, in my mind these careers were not mutually exclusive), challenged myself to read one thousand books, hoped to write a novel, promised to travel the world seeing all of its wonders, and that I would discover a cure for a disease. I was a supremely confident child who liked to contemplate anything and everything I learned about the world and what my place in it would be; I can say today fourteen years later that the goals my younger self dreamed of are still the same ones I hold dear to my heart now (with the notable exception of having dropped the archaeology aspirations as I sadly learned doctor/archaeologist is not an actual job- such are the woes of life). However, what I could not have known at the time as I sat writing and contemplating my future was that in one short year the world as my innocent eleven year self knew it would be utterly and completely shattered with a devastating medical diagnosis of a rare, mysterious condition forcing me to grow up overnight, that no one in my life had ever heard of before. At the tender age of twelve in the guise of four seemingly innocuous letters a fiery red monster came into my life  -CRPS- the acronym for a debilitating and devastating neurological condition which holds the unfortunate misnomer of “the suicide disease”, and is aptly described as “if hell were a medical condition” has gone on to impact every aspect of living for over half of my life now making my goal list ever more important to hold onto while simultaneously being all the more challenging to achieve. You are probably wondering why you have never heard of this condition before if it is described in such grave terms, I am writing this to shed some light.

CRPS stands for Complex Regional Pain Syndrome (formerly Reflex Sympathetic Dystrophy (RSD)), a rare neurological disease and chronic pain condition where the primary symptom is severe, debilitating, unrelenting pain- sharp, stabbing, burning, aching, tingling pain twenty-four hours a day seven days a week of screaming, tear out your hair nauseatingly awful proportions of pain that does not end. There is no known cure. Identified as the most painful condition medically known, ranking a 42/50 on the McGill Pain Scale (yes, this is higher than unprepared, unmedicated childbirth, cancer pain and arthritis), current research indicates that the cause of CRPS is multifactorial with malfunctions occurring in the Central Nervous System (CNS), Autonomic Nervous System (ANS) and Immune System. Essentially what occurs in the disease process of CRPS is that instead of pain and inflammatory responses in the body shutting off after an injury has healed, they become amplified in a vicious, disabling and debilitating looping pain cycle- the electrical wiring of the body has gone haywire.  Underlying pathological mechanisms cause a distinct set of symptoms including systemic sympathetic neurological dysfunction, and in the affected limb(s) gross edema, mobility issues, muscular atrophy and spasms, temperature asymmetry, changes to bone and vascularization causing marked skin discoloration, alterations in nail, hair growth and sweating, changes in skin texture and severe allodynia (hypersensitivity). This means the lightest touch by something as harmless as sheets or water from a shower causes excruciating pain- not to mention car rides, hugs or many other aspects of daily life we often take for granted until it is too late to realize how dramatically life can change in a single moment. Limbs can rapidly become deformed and lose their function. Secondary constitutional symptoms that can develop include cognitive dysfunction (concentration and coordination issues, memory loss, confusion, and brain fog), mood changes (depression, anxiety), insomnia, gastrointestinal problems, temperature intolerance, and extreme fatigue among others. While improvement is possible with early treatment, in many cases CRPS is a progressive condition which has the potential to spread from the initial limb to other areas of the body; it is a condition which is relentless, unremitting and unforgiving for the damage it causes.

Many days I cannot get out of bed because the symptoms of CRPS are so disabling with my very own swollen rainbow leg turning into a variety of strange patterns and colors- blue, purple, angry red, and fiery orange. At times it looks like a dead limb. My leg is so ice cold the sharp freezing temperature can be felt through thick fleece pants, yet my leg paradoxically burns as if a roaring fire has been lit directly upon my skin, knives are furiously stabbed up and down and bricks weighing tons crush my bones. Simultaneously spasms of horrific intensity lift my legs off my bed, and later on pins and needles set in so strong I have to use my arms to pick up leg to move it, while within in minutes of standing color changes occur as blood furiously tries to perfuse constricted blood vessels. With careful attention and herculean effort, joints need to be gingerly moved out of the position they have twisted themselves into. I cannot weight bear through my leg without the use of crutches and as the years have gone by I have developed an array of widespread neurological symptoms throughout my body and CNS sensitization. Due to the variety of symptoms that are experienced for individuals affected by CRPS as their body turns on them and increasingly falls into a state of “high alert”, the world itself becomes an enemy in many ways as any light, touch, sound, vibration, movement, temperature change, stressor (physical and emotional) and the very acts of living daily life can send you into a flare lasting days, weeks or months. It is a condition which is extremely fatiguing, both physically and mentally, and notoriously difficult to treat.  In fact, if treatment is not begun in the early stages outcomes are often not favorable. As it is a condition which is highly variable and unpredictable in its course, a cycle of gains and setbacks is typical- I have had to relearn how to walk more than once. This is compounded by the fact that there is an egregiously serious lack of understanding of this condition  (both medically and societally), targeted available treatment centers and research funding, despite CRPS being identified as early as the American Civil War. Alarmingly since there is a profound dearth of awareness of this condition, majority of patients with CRPS often sadly experience a large degree of social alienation, wait extended periods of time for an accurate diagnosis and are accused of faking symptoms- this is dually deeply traumatic and damaging to patients  mentally and physically. In direct contradiction of the blatantly visibly apparent pathophysiological symptoms I was presenting with I was told this “was all in my head”, at one point solely being offered psychiatric intervention as I supposedly “wanted attention”. The initial doctor I saw falsely reported a test as negative when in fact it indicated clear signs which can help to diagnose a case of CRPS, in turn I was also refused a referral to a specialist despite several doctors noting I had an extremely severe and textbook case of CRPS. CRPS presents the perfect case of how essential awareness and knowledge is to combat stigma, misinformation and how awareness is the surest and most important tool those in the CRPS community have in our arsenal  to advance towards a cure, and at the very least a baseline knowledge of CRPS in the medical community.

Life with a chronic illness is a delicate dance. A balance has to be struck between caring for what amounts to a full time job in managing your condition but also living life passionately versus existing, in a world that is not readily acceptable of differences. This becomes even harder in the age of comparison and social media in which we live, where oftentimes people are held to others standards. When those standards are not met one is labeled as lazy, a failure and just simply not trying hard enough. When no satisfying answers are given, when no instant fix or permanent solution can be found(after all, this is the 21st century that is meant to have answers for everything), people become frustrated and turn in disbelief, skepticism and anger towards the individual with CRPS thinking the reality of this simply cannot be true- it must be exaggerated. When people are unaware of the nuances of living with CRPS a lot of hurt can ensue. Friends slowly trickle away, relationships crumble as blame, anger, loss, and frustrations are thrown around, missed opportunities abound. The very basic dignity we need at the moment of our greatest suffering is stripped away bit by bit as people realize that you are not getting “better” that this way of life is the new normal and the onus of blame falls on the patient- it’s our fault, if only we could do more then surely we would be “fixed”.

If determination alone could have eradicated this condition I would have been healed the minute I was diagnosed, and in the moment each and every single time I have come back from a setback. While undoubtedly adopting a positive attitude dramatically increases one’s ability to handle a chronic illness, positivity alone cannot alter underlying physical pathology which is why there is a desperate need to have the unknown questions surrounding CRPS answered. In an effort to “get better” I have had countless surgeries, ketamine infusions, epidurals, weeks of inpatient hospitalizations, lumbar sympathetic nerve block injections, and hundreds of hours of physical and occupational therapy. On a daily basis I take several forms of medication all in a mammoth effort to function (these include anticonvulsants, calcium-channel blockers, anti-spasmodics, narcotics and anti-inflammatories). There has also been experimental treatments, alternative treatments, hypnotherapy, heat therapy, TENS, biofeedback, an implantable medical device, and cognitive behavioral therapy. Personally, I am a big believer in adopting spiritual practice, yoga, meditation, distraction techniques and mindfulness as a means of coping- those have been my saviors in coping day to day along the way that I have the power to do on my own. I have physical scars that have been closed and reopened again and again, my leg was stuck completely straight for nearly two years and then distorted into a bent position for another year, I have had to take the same medication given to cancer patients due to the severe nausea and vomiting from treatments, a treatment caused grand mal seizures as the result of an adverse reaction, I had a device implanted and then removed due to complications- treatments for CRPS are no walk in the park, it is a serious and grueling process of trial and error.

As I do not look visibly ill and CRPS is a relatively unknown condition I have often faced a lot of discriminatory behavior, words and actions (such as being stopped from taking a vacation, not being allowed to use a chair to sit in class, have had my need for disability services questioned and so on) and found dealing with people’s misunderstanding and lack of empathetic understanding (it is important to note that there is a marked difference between empathy and sympathy which is what many people wrongly believe is what someone with chronic illness wants)even more difficult to manage than the condition itself. I have been told that I do not want to get better, that what I am feeling cannot possibly even be real or hurt as bad as I am describing. I have been told that I just need to suck it up and have the right attitude to think it away (my friends would tell you that I am the most annoyingly optimistic person they know), that I just can’t handle this and need to move forward, it’s not that big of deal, get over it and get on with life. If I talk about the difficulties associated with CRPS then I am focusing on it too much. There are people who say how very nice it must be to not be in school or to not have a job (not thinking of the very real and serious financial, academic and life planning implications this diagnosis has thrown a wrench deeply into), that at least it’s not cancer, or how great it must be for me to take narcotics to “get high” (nausea, confusion, dizziness are more apt descriptors). I hear that I don’t really need to take my medications I just need to get out more (never minding the fact that medications to help control spasms and dilate my blood vessels to increase circulation are what allow me to function). It’s questioned how can I be that tired when I’m so young, how can air (eye roll) hurt me? A teacher told me I should just amputate my limb so that I can attend more school. Grimaces from pain on my face in the rare occasion they show result in being asked why I am mad or being a bitch. Many have told me that I cannot possibly be happy in life, that I am a burden for my family and that if they had my life they would kill themselves. Medical professionals every time I go to an appointment for a separate concern question if I really have CRPS (particularly because of my age as the average age of diagnosis is around 40 years old), have told me it cannot be that bad since I am not in a wheelchair, and upon seeking treatment for a breast lump the minute the physician discovered I had CRPS she told me that I just needed to get off of my crutches and I would be fine since I was overreacting- a separate surgeon later went onto remove a tumor (benign) that was over five centimeters. There is a constant push that if I somehow just did more research there would be an answer for a cure (I can assure you that I spend hours weekly scouring medical journals and information from all over the world looking for answers I desperately not only want but have an imminent need to acquire). Exasperation unfolds at how one day I can do something and the next I cannot. People assume because I am not depressed and laugh that there cannot really be that much of a struggle occurring in my life. Many proclaim that they know better in how I should live my life, or if they were me they could handle it so much better- this has personally led me into a lot of situations where in order to please someone else I have done things that have set me into a flare and backfired greatly. This could be as simple as going out when I knew I needed to rest. The individual with CRPS alone is the person who pays the consequences- more pain, longer sleepless nights, increased medications with terrible side effects- of all actions taken, so pushing someone even if meant well can have devastating implications. Unfortunately, the few examples I have written of are not unique to my story. Read any blog or article on CRPS and you will see how much of a shared experience such attitudes are for those of us with CRPS.  This commonality shared among CRPS patients in the crippling aspect of people’s judgments, inaccurate perceptions, and negativity we face fueled by a lack of understanding and knowledge, misinformation, pervasive inaccurate stereotypes, and the basic questioning if such a horrible medical condition can even exist is extremely disconcerting.  I will never be able to grasp the callousness humanity can display in the face of not understanding something but I choose to confront such ignorance with the positive step of sharing the reality of my life instead of bitterness or anger- life is too beautiful for such emotions.

Many negative stereotypes pervade those who live with CRPS and other chronic illnesses- this urgently needs to be addressed so that those suffering, often in silence, can be built up with positivity to an overall health and life balance whereby no matter how many times life may be telling you no, you develop new strategies to say yes.  I am just a girl, with a single voice, living my life with CRPS hoping to impart some positivity into the world, my hope is that in sharing my story it may empower someone else and collectively our voices can rise together. If I can be one drop of water in the ocean to help change the culture around this illness then I’ve succeeded. If one person reaches out for help with tips on how to get through this or someone stops to consider this condition and their reactions to individuals with it then I’ve succeeded. In the face of the seemingly impossible facts we do know about this condition, incredulity often arises saying this cannot possibly be real, but I can assure you that it is a very brutal medical reality for millions of individuals across the globe. If awareness can be increased of the true nature of what someone goes through on a day to day basis living with CRPS, especially how strong we have to be to face the world when that is often the trigger for our symptoms, then I believe the commonalities you hear from CRPS patients of not feeling like they are heard would be changed. No one should ever feel that they are not believed. In order for patients to successfully manage chronic illness, acceptance is critical so that new adaptive ways can be developed to make life easier as well as minimizing triggers, to aid in creating an environment which optimizes health outcomes. However, oftentimes acceptance, adaptations, asking for help, and knowing when to say no can be seen as “giving in”. As health news typically focuses on acute over chronic conditions, what the public cannot understand is how demanding, emotionally and physically draining it is to control CRPS, how the simplest of tasks become your own personal Everest. Chronic illness is like drops of water slowly wearing down a surface until it is finally raw and exposed to the elements; there is no break from it, you carry it with you wherever you go.

Yet, strength comes from us living with what is rather than trailing into the land of what ifs and as humans as long as we are breathing change is possible, we can live and inspire and make our way through life even if you have been dealt the card of CRPS and all the difficulties that it entails. There is much more to me than CRPS and so very much I want out of life regardless of its diagnosis. Those of us in the CRPS community desperately and urgently need research to be done, myths to be busted and solidarity shown so that we can have a chance to achieve our dreams. It is as much a part of me as scar- it might not be pretty but it is there visible every day, and I actively choose to go on each and every day because I have life worth living. Never allow someone’s judgment to take your worth, to make you feel less than. You are not alone. Your voice is heard. Your pain is real. CRPS is real. The symptoms that are so strange you yourself are unsure if this can really be happening are real. The bone crushing, and emotionally, mentally, physically draining exhaustion from the fight your body is engaged in which makes the tiniest things a battle won when you complete tasks is real. Hope is real. I cannot describe the joy I feel in the morning when I wake up and can wiggle my toes- in 2015 I could not do this. To others this may seem insignificant, but when you have CRPS you have to learn to be your own marching band and champion all those achievements that only you know in your heart how magnificent they are- each degree of flexion or extension of a limb gained, each time you can stand a moment longer, each time you laugh a little longer and that wonderful moment when you realize that yes while you have this hanging over your head, in small ways each day you can move forward on your own terms carving out a unique life that works for you regardless of societal expectations and definitions of what constitutes “normal”. Life is not perfect yet that universal truth, is what makes life remarkably special- magic lies in imperfections- it is through challenges where we find our strengths and most importantly our dreams.

In spite of the hardships that have come into my life uninvited I have continually learned how to adapt to each new circumstance that has come into my life along this journey, redefining “success” and gaining a greater appreciation for life each passing day. Many of the achievements I am most proud of no one but I would be aware of. As a recipient of scholarships I hold a 4.1CGPA undertaking a BSc in Health Sciences which I have every hope to continue so that I can apply to medical school however long it may take me, I have climbed to the top of Angkor Wat, swam on The Great Barrier Reef with Nemo, watched the sunrise over the Ganges River, lived life fully as a friend, daughter and sister, having always maintained this is not going to be the defining feature of my life, even when that is how people think I live. I have learnt along the way that when I try to ignore my CRPS I get into big trouble, for a long time I was obsessed with hiding what I needed, how I was feeling, tried to fit myself into the world rather than mold it around what was best for me, which pushed myself further down the rabbit hole of CRPS, worsening it greatly. No one prepared me at 12 that at 25 I would still be living with this, it has brought me to my knees but through that I have developed into an individual who chooses to see the good in everything, living life mindfully (my sister may possibly refer to me as Gandhi) and wanting to leave a positive mark in this world. I don’t know where the future will take me, my life is a twisted web of uncertainty commonly taking two steps forward and ten back.  Hopefully I will find my way to Australia for medical school as I do much better in warmer climates; the Game of Thrones slogan “Winter is Coming” incites as much fear into me as all the character of Westeros as cold is one of the worst triggers for CRPS. I know it will be slower and at my own pace, and I have to remind my type-A, perfectionist self that this is ok, when many critique me. I may have climbed those stairs to the top of Angkor on my behind, could swim for no longer than ten minutes and more often than not I am on the end of reprehensible judgements and comments that come out of ignorance, I may have “only” completed two years of university towards my degree having to withdraw under extenuating circumstances despite A+ grades in classes because I simply physically could not go on, yet the point is I’ve managed to make inroads towards my goals in my own way, albeit with some very odd and twisting pathways. Living with a chronic illness often what people assume to be are your weakest points in life, are in fact your strongest moments requiring great stability and self-assurance. For me, the decision to stop school temporarily two and a half years ago was single handily the hardest decision I have ever made in my life. I want nothing more than to become a doctor working with Doctors without Borders and have the academic abilities to do so, however at the moment CRPS seems to have a different plan- I say go right, it turns left by going up, down, taking a U-turn and then a somersault.  The struggle we face in having a chronic illness when our minds and attitudes are capable of achieving anything, reaching the moon and stars, but your body is betraying you at every turn is heartbreaking- especially when people assume if you just tried a teensy weensy bit harder to get there you could. Knowing when to put your health first, to slow down and re-evaluate, to block out extraneous noise is the most important lesson you will learn on the journey of chronic illness, as life with chronic illness is not black and white, it is fifty thousand shades of grey. There is loss, heartbreak, anger, hurt, frustration, disappointment but also extraordinary moments of humanity- laughter, joy, love and horizons expand within even if the outside world shrinks at times.

I have been remarkably blessed in a multitude of ways in my life- my parents are my fighters, my doctors are my heroes who watched me grow up just as my family did, my sisters are my laughter factory, my friends are my cheerleaders, the world is my inspiration. I hope I can do the same for others, to positively impact the life of someone suffering right now. Maybe there is someone who has been recently diagnosed, who is scared and hurting, or someone struggling to get an accurate diagnosis, another unsure how to go on, or a family crippling under the burden and fear of what has so unfairly been hoisted upon them, to those I want to impart hope, it is always there, ever present do not ever lose sight of that even when you cannot understand what is occurring and communication breaks down. Take a moment, step back, close your eyes and take a deep breath. Maybe those who are reading this can begin discussions among friends and family of those afflicted with CRPS to give a small piece of insight into what CRPS is truly like as patients typically minimize the impact the illness is having in effort to maintain normalcy. The stark dichotomy we present to the public versus the reality of what we are feeling is staggering. In fact, often when people compliment me that I look good is often when I’m feeling at my worst- we are powerful masters of disguise wanting to live as normally as possible. Although, this double life approach can actually cause more harm than good since it is exhausting by any measure and management, support, and adaptation are key to successfully managing CRPS.

Being diagnosed with a chronic illness is a terrifying life altering experience in every possible way that you can imagine and in all the unsuspecting ways you couldn’t even begin to imagine, but a diagnosis does not mean life has to end. The patient experience, sharing helpful information (especially “tricks” that can help alleviate symptoms) and input is critical to the healing process in finding ways to manage this condition. I firmly believe that our perceptions and the way in which we choose to view life greatly shapes our reality, therefore it is of the utmost importance that those with CRPS have a strong foundation of support, love and understanding. There is such a profound lack of understanding about this condition that great damage is done to patients through delayed diagnoses, improper or ineffective treatment as well as discriminatory barriers that are discreetly and at times overtly built into and exhibited by society. I want to challenge the dialogue and perceptions that so often unnecessarily plague those affected with CRPS that only further complicate an already difficult situation. I want to begin a discussion to get people fired up about the fire that is CRPS, so the seeds of awareness are planted to make people aware of this devastating condition, and for those that are afflicted with this for them to know that there are people out there who feel the same fear, concern and frustration not only from the illness itself but also the negative perceptions all too often labelled on you.  CRPS is an enigmatic condition that is both fascinating from a scientific and human perspective in a myriad of ways. There is a deep need to have a strong media presence of CRPS so that it slowly trickles down into mainstream culture. I implore whoever is reading this as November is CRPS Awareness Month, share this, discuss it, pin it, post it, do some research on CRPS and maybe in doing so another person may evaluate their perceptions about those they hold of someone living with CRPS. Alternatively someone with CRPS may smile knowing there are others out there in the world right now who are reading about their condition bringing them hope for a better future with less uncertainty, less judgement, less pain. Knowledge is power and so I share a small portion of mine dedicating it to all the amazing, powerful fighting individuals with CRPS, the friends and family who support them unceasingly, and the doctors who dedicate their lives to helping us. Small acts can collectively together bring big results. Whenever someone was having an exceptionally bad day during physiotherapy sessions, my physiotherapist would bring out her magic wand to cast a healing spell over us to take away our pain. This simple act of kindness, that would bring hope and a jolt of laughter with big smiles when people needed it most sticks with me every day, so I say in honor of that, that knowledge and words hold magic, so this essay is my magic wand, in the belief that one day soon CRPS will have a real magic wand of healing.

Written by Roderick Borrie, Ph.D. for the RSDSA blog.

The last thing Penny expected was to be seeking help from a psychologist.  She had always been a fiercely independent person who could take on most problems and solve them on her own. Penny was the one who took care of others, not the other way around.

An accident at work in January 2015 changed all of that. After some convalescing and physical therapy, Penny assumed that she would be able to bounce back to her old self. But that didn’t happen. At first, she was merely frustrated by the tenacity of the pain in her neck and shoulder, but it evolved into fear as her pain worsened and spread into her left arm and down her left leg. Her skin often felt on fire and excruciating to touch.

After about a year of pain medications and physical therapy that had no ameliorative effect, Penny was referred to a new orthopedist who diagnosed her with Complex Regional Pain Syndrome (CRPS).

She felt relief at first. Now that they know what it is, she thought, there will be an obvious treatment and I will be able to recover. But she soon learned from her doctor that there was no single treatment of choice. Instead, she could choose from an array of experimental treatments that had worked for some. Penny did her own research and she discovered that CRPS is poorly understood and that there was no clear-cut treatment regimen. She joined a support group where she met people living with CRPS who had tried many different therapies with mixed results.

Am I Crazy?
Penny had become deeply demoralized and depressed. Her personality changed. She was irritable, impatient and overwhelmed. Her family walked on eggshells around her. She had begun to doubt her sanity.

She had lost her love of life and desire to do anything. She began to feel that any time she attempted to do something normal, like clean the house or do the laundry, she paid a heavy price, so why bother?

A friend with CRPS suggested that Penny seek counseling with a psychologist who was familiar with chronic pain.  She found that talking with someone who had experience helping other people in pain helped her see that she wasn’t crazy. Her pain was real. Her life had been turned upside down by it. Together they began to salvage her old self from the wreck her life had become.

Stress Can Exacerbate the Pain
An often-overlooked element of chronic pain is the enormous surge in stress that comes with it. Stress is our automatic physical response to almost any demand we encounter. Called the “Fight or Flight Response”, the stress reaction occurs naturally to large and small demands alike. The morning alarm clock, a looming deadline, a change of plans, or a family crisis all receive some of this same response. All the stressors of our daily life join forces to increase the response, revving our bodies to be ready to do battle or run. This would be fine if you are a caveman.

Stress becomes dangerous because we become accustomed to our usual level of stress and tend to stop noticing the constant muscle tension and heightened anxiety. Then when we hit stress overload, we can have intense physical reactions. Headaches, panic attacks, digestive problems, aches and pains, increased susceptibility to illness, heart attacks or strokes can be triggered by stress overload.

And Pain Can Cause Stress
Life is full of stress and in our society, most people function at their maximum tolerance to that stress. And then along comes pain. Chronic pain is a particularly onus stressor for which there is no clear-cut response. In addition to this extra stress, pain makes dealing with the usual demands of the rest of life much more difficult or at times impossible. As a result stress overload is common for sufferers of chronic pain. Typical symptoms include increased anxiety and many changes usually connected with depression, like, social withdrawal, irritability, loss of interest, poor concentration, easy tears, lack of energy and sadness.

The Big Unknown
Once a person receives the diagnosis of CRPS, she/he has already been on a painful journey of medications, treatments and doctors’ visits. For many illnesses, diagnoses can add clarity to understanding what is wrong and therefore how to fix, or treat it. But this is not the case with this little-understood syndrome. For many people, CRPS is more of a “life sentence” than a diagnosis. There is no cure and no consensus on how to treat it. Some doctors even refuse to treat it. And so rather than finding it helpful, a CRPS diagnosis can add a sense of helplessness and hopelessness, critical components of depression. The endless struggle with pain can obscure your sense of who you are. It is difficult to recognize this sad, grumpy, withdrawn person as the same person you used to be.

Body and Mind Connection
While chronic pain is most definitely a physical phenomena, the way we think about, feel and understand our pain can make a huge difference. Talking with a professional can help untangle you from your current situation and become someone you recognize again. Pain is inevitable in life, but suffering is optional. Pain is a sensation, and suffering is all the things we say to ourselves about that sensation. What happens to the sensation of pain when we add, “This is killing me”, “This is never going to end”, “Why did God do this to me?” or “This has destroyed my life”. All of this can quickly amplify the pain. But pain without these kinds of judgments, or suffering, is actually more manageable.  And so becoming aware of your thoughts about pain is the first step.

Working with a psychologist specializing in stress and pain management can be crucial for persons with CRPS. Learning skills that make stress manageable can help you regain a sense of control and hope. The ability to reduce stress involves developing increased physical and mental self-awareness. This can include:

• Relaxation techniques, including diaphragmatic breathing and meditation
• Learning to monitor your mental and physical capacity to pace everyday activities
• Recognize the judgments about your pain and choose to not engage them
• Begin to accept that your ability to function is in flux, and that this is normal and okay
• Become comfortable with letting go of planned activities, without beating yourself up about it

Develop a New Relationship to Your Pain
Developing a new relationship with pain is a critical factor. With a new awareness of what is going on in your body and your mind you are on your way to finding a self that you can recognize again. Penny discovered that learning to manage her stress and acknowledge the thoughts that worsened her pain enabled her to be less frequently incapacitated. With sensible pacing, she was able to do more and be more of her old self. Once she became more accepting of her present condition, it was easier to normalize her relationships with those around her and be an active part of her family and social circle again.

The following blog post was written on 11/6/16 by Nancy Sajben, MD for her website. Shared with permission.

I spoke only briefly this morning at the RSDSA conference but there is so much to add. Most importantly, thanks to RSDSA for helping so many people with CRPS. They fund pain research, they are starting a free children’s camp, and now offer physicians one hour free CME teaching about CRPS.

Holistic view, 36 points – that’s how I view caring for brain and nerves, very similar to the details used by UCLA Alzheimers Research Unit. In June 2015, I posted on their work on memory loss, dementia. We know chronic pain means inflammation in the brain, excess of proinflammatory cytokines. CT scans show memory loss and brain atrophy in those with chronic low back pain.  Can this inflammation lead to Alzheimers? Even if it doesn’t, why not maximize what we know we can do to help brain. As I view it, simply be meticulously detailed in giving the central nervous system (CNS) the best chance to relieve or prevent pain or disease.

Below is a brief list.

To find detail and sometimes depth, check the alphabetical lists on either side column [on Nancy Sajben’s website] until you see the category or tag when I first posted on that. Or simply plow through 7.5 years of detail with references. You do the work to check the side columns as I have no time to embed links below, taken from throughout this site.

For now just a list of medication players that may be strikingly important in trying to bring intractable pain into remission even after 20 years. Yes, even chronic for decades. The list applies to intractable pain of all causes. I omitted listing standard interdisciplinary approaches commonly used by every pain specialist around the world. My patients have failed all those.

Some patients with CRPS combine my medications with ketamine infusions.

For those who remain on opioids, ultra low dose naltrexone (10 to 60 mcg three times daily) can significantly reduce pain, reduce opioid induced hyperalgesia, reduce windup, and thus reduce the dose of opioid needed to give improved relief. Opioids cause pain and trigger pro-inflammatory cytokines that create more pain. I strongly recommend slowly, gently tapering off opioid, and remaining off for 3 weeks before the following is trialed:

1. Vitamin D is anti-inflammatory. Important. Helps pain, depression. If bone loss is an issue, you will not absorb calcium from food if D is low. Mayo Clinic’s publication in 2012 showed more morphine is needed for pain if D is low. Huge literature of its benefit for depression. First topic I posted on – it is that important.74.
2. Vitamin B6 can cause burning pain from scalp to toe, a toxic neuropathy. It can be toxic to brain. It is loaded in tons of soft drinks, “energy” drinks, supplements.
3. MTHFR mutation may be present. Body cannot process  the B12 and folic acid you are eating or taking in supplement. A simple blood test, costly. Treatment is as simple as buying methyl folate and methyl B12 – no prescription needed. Folic acid in particular is profoundly important for one of the major energy cycles in the body. Can cause multiple conditions, some fatal, all from one single cause.
4. Minocycline 100 mg/day is the dose I use but higher doses could be given. It is used daily for decades for acne. I may prevent spread of CRPS if given before surgery, dental work, even minor procedures. I start 24 hrs before, and continue for days after full recovery from surgery.
5. Testosterone  in either male or female is depleted by opioids, it may be depleted by stress. Low T is a risk for depression, weakness and osteoporosis.
6. Naltrexone low dose (LDN) – profoundly important. A glial modulator. Lifelong use.
7. Dextromethorphan – reduces hyperexcitable glutamate
8. Oxytocin
9. Memantine – double the Alzheimers dose for CRPS. Like ketamine, it blocks the NMDA receptor.
10. Lamotrigine
11. Palmitoylethanolamide (PEA, PeaPure) a glial modulator, also acts on mast cells. A food supplement. No Rx. Your body makes it. Plants make it. Capsules & cream
12. Ketamine via nasal spray, under tongue combined with IV or not, works on glutamate-NMDA receptor. Not an essential drug. Where ketamine has stopped working, patients have become pain free after years of CRPS.
13. Creams combinations, so many. Most of my CRPS pts very much like   Mg++/guai  10% each. You may or may not trial various combinations lido/keto/keta, etc. Numerous. DMSO 50%.
14. Medical Marijuana (CBD, THC, terpenes) Marijuana saves lives. Entire issue of Science, November 4, 2016, devoted to pain. NAC and alpha lipoic acid are noted by research from the Netherlands.

Appendicitis

If it has not burst, treat it like the infection that it is. Surgery may never be needed. I posted details of publications early 2016 with a case report. That young man was being rolled into the OR, instead was discharged 100% better without surgery 2 days later.

Medications target 3 main systems, as discussed at the conference

The opioid receptor – opioids create pain. They trigger glia to produce pro-inflammatory cytokines. Opioid induced hyperalgesia may occur. Cannot be used with low dose naltrexone.

The glutamate NMDA receptor – ketamine, memantine.

Glia, the innate immune system – glial modulators.

Before they see me, my patients have failed all prior therapies even ketamine coma. I view it like football. You have one guy running down the field with one ball. Do you want to win the game? You’ve dealt with this for years. Let’s not prolong it. Hit it with my main choice of meds all at once. Jump on it. What if you get 10% relief – will you even notice 10% after many years of severe pain? But if you get 10% from each of 5 meds, then you are talking 50% relief as a start. Address those 3 main pain systems – even without ketamine – and I have posted a case report after 20 years and 3 suicide attempts before seeing me, she has been pain free for about 4 years as I recall. A surgeon nicked her sciatic nerve when she was 27. Two years ago, pain free, running on her treadmill, she twisted her ankle. She has permanent foot drop from the sciatic nerve injury, but even spraining her ankle did not flare her CRPS. Twenty years of CRPS, pain free for about 4 years. And ultimately, years ago, she was tapered off all the drugs with one exception: LDN lifelong.

Most importantly, I did not have time to relay a very special message from my patient in Brooklyn: “Surround yourself with friends and family who love you. Never give up hope.” She had her first 2 or 3 pain free days this week, as she slowly increases doses of medication. She’s not yet at maximal effect and even then there can be increases. Sending love and courage.

RSD support groups are essential and I am glad to see the RSDSA list of so many throughout the country.

There is so much more. Indeed, at least 36 points discussed on June 2015.

Disclaimer

The material on this site is for informational purposes only.
It is not legal for me to provide medical advice without an examination.
It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

Written by Michael J. Cooney, D.C., Clinical Director of Calmare Therapy NJ USA.

My 30-year career has revolved around treating pain. Since I was a kid, I was always trying to “fix” everybody. In high school, I played on the tennis team and was the self-designated team doctor. Decades later, Dr. Kelly and I grew frustrated that we could not lessen the pain of some of our treatment and medication-resistant patients at our clinic located just outside New York City.

So we went in search of a non-invasive pain treatment to help the patients dealing with severe neuropathic pain and we discovered Calmare. We introduced this technology in 2011, and many of our patients were frustrated RSD sufferers who had already tried all the painkillers, Ketamine treatments, spinal cord stimulators, nerve blocks, surgery−you name it. And none of them helped to lessen their pain or other physical symptoms.

In many cases, patients have told us Calmare was their “last hope.” I think one of the reasons we’ve been so successful in helping CRPS patients may be attributed to the fact that as a chiropractor, I have specialized training in the relationship between the joints, bones, muscles and nerves. As a result, I have a clear understand of the optimal placement of the device’s EKG-like leads in conjunction with the original injury or surgical site.

We have achieved many successful patient outcomes in the past five years, many who arrived at our clinic reliant upon wheelchairs.

But let me be clear–unfortunately, this is not a miracle cure. It does not work for every patient. And over time, the pain condition can return for some patients, so occasional booster treatments may be required.

I’ve listed some of the most common questions we’re asked below, as a way to explain what this treatment is—and is not.

How does scrambler therapy actually work?

It uses a biophysical (using physical methods) rather than a biochemical (drugs) approach. The device relieves pain directly at the pain site through small electrodes through which a ‘no-pain’ message is transmitted directly to the nerve for about 35 minutes using 16 distinct algorithms.

During the treatments, the patient’s pain steadily decreases as the brain gets the ‘message’ that there is no more pain at the original pain site. In some cases, pain relief has been reported in as few as one to three treatments, but each patient’s case is unique.

Where can I get this treatment?

There are several providers (about 15-20) throughout the U.S. This is a ‘provider dependent’ therapy and I encourage you to choose a “Calmare Certified Provider,” signifying they have treated a certain number of patients successfully, obtained specialized clinical training in the safe and proper use of the device, and have submitted positive clinical data. I would also ensure they have successfully treated many CRPS patients.

As the doctor, how do you know if the treatment is going to work for a new patient?

In my experience, after the second or third treatment, if there is no significant reduction in pain, it may not be a viable treatment solution. During this early phase, we are looking for a lessening in the level of pain, which tells us we are beginning to disrupt the pain message. With this said, the vast majority of CRPS patients have achieved very substantial relief of pain and physical symptoms for prolonged periods of time.

Does Calmare work for CRPS Type 1, Type 2 and Fully Body RSD?

In our practice, we’ve seen outstanding outcomes in all of these types of CRPS, including patients who presented with substantial physical symptoms such as welts, rashes, swelling and open sores.

Does it need to be repeated on a regular basis for CRPS?

It depends on a few key factors: severity of the condition; how long the patient has been living with RSD; additional medical issues; and if the patient is following our post-treatment protocol. Some patients need to come for booster treatments yearly, a few more often, and some never require further care.

How many sessions are needed?

Most patients need one treatment for 10 days (Monday-Friday) lasting about 35-minutes each.

How is the Calmare device different from a tens machine?

The scrambler machine has been awarded a patent from the U.S. Patent and Trademark Office which identifies the device as a unique entity, unlike anything else in the market (i.e. a tens unit).

In regard to comparing the MC-5A scrambler machine to a tens unit, the two devices have marked differences:

• The Calmare MC-5A device creates a low-energy electrical impulse which travels through the patient’s nerves delivering a “no-pain” signal to the brain using 16 distinct algorithms. This process “tricks” the brain that the area of pain is normal and eventually results in prolonged pain relief.
• TENS units use high energy electrical impulses to block pain signals or distract the brain, but when treatment stops, the pain usually returns. It emits an electronic message over one single algorithm.
• A tens unit is self-administered by the patient whereas the scrambler is administered by a trained medical professional.

Are there any clinical trials that evaluated this treatment for CRPS specifically?

I am one of the first Calmare providers to treat CRPS sufferers. I have shared my findings and outcomes with key pain management research hospitals and found them to be receptive to our data. In October 2015*, the Mayo Clinic published an article about a CRPS patient’s positive outcome after having the standard 10-treatment scrambler therapy protocol, although the clinical study was formally designated for people who had undergone chemo. [This was done] under the direction of Dr. Charles Loprinzi, with whom I have spoken over the years. We monitor all of the ongoing hospital-based research and clinical trials and post updates on our website.

What are the possible side effects or negative impacts from having scrambler therapy?

I love that question because there are no reported side effects. It is also a painless therapy, but for people with severe sensitivity to touch, the first treatments can elicit some discomfort, obviously, when our leads are initially placed. But this is usually alleviated as the therapy progresses.

I’m currently taking opioids to help me manage pain. How will this affect my Calmare treatments?

Physician-prescribed opioids are not a problem when using scrambler therapy, however, anticonvulsants and antidepressants appear to dull the pain center, which can decrease the overall response to Calmare. I can go into greater detail on this subject with each patient.

Who or what kind of medical condition is not suited for this treatment (contraindications)?

Each patient and medical history is unique, but people with these medical issues are generally not suited to undergo Calmare:

Patients with pacemakers or automatic defibrillators; history of heart attack, aneurysm clip, vena cava clips, or skull plates (however metal implants for orthopedic repairs are allowed); pregnant and/or breastfeeding women; history of epilepsy, brain damage; and use of anticonvulsants, other than for neuropathic pain control.

Under medically-supervised care, neurolytic pain control treatment should be carefully reduced to 0 four weeks before therapy begins.

Does insurance cover treatment?

Worker’s Compensation in the U.S. has been willing to reimburse in several instances. Some of our patients have been successful in winning reimbursement (after treatment) from their medical insurance companies. Keep in mind, most of their claims were originally denied, but when they were appealed, some patients earned some reimbursement.

Is it possible to give us the numbers or percentage of success using Calmare treatment for CRPS/RSD patients?

Speaking specifically to my practice alone and referring to CRPS patient cases, we have seen a success rate of 75 to 80 percent. “Success rate” means that the level of chronic pain and other physical symptoms have been substantially decreased−or eliminated.

How many CRPS/RSD patients have you treated?

Since we started treating CRPS and RSD patients in 2011, we have treated nearly 500 patients from 15 countries.

Dr. Michael Cooney is one of 10 certified providers of Calmare scrambler therapy in the U.S. He specializes in treating patients battling severe neuropathy as a result of CRPS / RSD, fibromyalgia, diabetes, shingles, post-surgical pain and pain after chemotherapy. To learn more, visit www.calmaretherapynj.com or call 201-933-4440.

Take a moment to read the Mayo Clinic article and Mayo Trial Abstract.

Originally Titled: Calmare Scrambler Therapy- When Traditional CRPS Medications & Treatments Don’t Work

Written by Alaa A. Abd-Elsayed, MD (Dr. Al), Assistant Professor Department of Anesthesiology, University of Wisconsin School of Medicine and Public Health, Madison, WI

It is nearly impossible to search for information on chronic pain conditions without stumbling across articles on the dangers of opioids.  The FDA has recently published action plans to reduce opioid abuse and a number of states are putting together new regulations regarding opioid prescribing.  For those suffering with chronic pain, all this negative talk of opioids can make someone who is using (not abusing) them feel like they are wearing a scarlet letter.  While the rationale for implementing these strict regulations on opioid prescriptions comes with good intent, it is also a burden those in need of adequate pain relief.

What many people forget is that opioids are not FDA approved for the treatment of chronic pain (greater than 3 months) – which is why, in part, regulators are beginning to crack down on long term opioid use.  So, the question remains – for those suffering with chronic pain, are opioids really the right choice?

When exploring treatment options for CRPS, the usual suspects are always noted: NSAIDs, neuropathic pain meds (gabapentin, pregabalin), antidepressants (amitriptyline, duloxetine), opioids, topical pain relief, physical therapy, and sympathetic nerve blocks.  Although these medications are widely used, none of these agents have been approved by the FDA for the treatment of CRPS – and there is limited efficacy data to support their use.  Specific to opioids, only one randomized controlled trial in patients with CRPS has been studied.  This study found no difference in pain relief between morphine and placebo (Harke, 2001).  Although the data is limited, the US CRPS treatment guidelines (Harden, 2013) still state that while opioids are a reasonable second- or third-line treatment option to try, they should not be used initially.

Since opioids really aren’t a good option for initial treatment of CRPS, what could be?  Results of several small trials reported over the last 15+ years suggest that bisphosphonates should be explored for early CRPS-1.  Bisphosphonates are a class of medications used to treat osteoporosis and other bone-related conditions.  The benefits of bisphosphonates is that they are non-opioid and may reduce pain by targeting one of the key mechanisms in early CRPS (localized osteoporosis at the site of injury).  Five placebo-controlled trials with various bisphosphonates have been completed, and each one of these studies saw statistically significant improvements in pain scores (Adami, 1997; Varenna, 2000; Robinson, 2013; Manicourt, 2004; Varenna, 2013).  The fact that these studies were generally small in size and conducted at single centers makes it hard to draw definitive conclusions. But taken together the results support the study of this class of drugs for the treatment of early CRPS-1.

Currently, no bisphosphonates are approved for the treatment of CRPS, however, there is a large, multi-national, ongoing clinical trial evaluating the use of oral zoledronic acid (AXS-02) in patients with early CRPS-1.  This study marks the first oral bisphosphonate to be evaluated for CRPS in a large clinical study with the intent of gaining FDA approval. Additional information about this study and other ongoing clinical trials can be searched for on clinicaltrials.gov. 

Dr. Al is a pain medicine physician at the University of Wisconsin Pain Clinic who regularly treats patients with CRPS.  Dr. Al is an investigator in the CREATE-1 study and is actively recruiting patients, contact his research coordinator if you are interested in learning more about the study (Maggie Chilsen, [email protected]). 

References

Harke H, et al. Anesth Analg. 2001; 92:488–495

Harden RN, et al. Pain Med. 2013 Feb;14(2):180-229.

Adami S. et al. Ann Rheum Dis. 1997;56:201-204.

Varenna M. et al. J Rheumatol. 2000;27:1477-1483.

Robinson JN, et al. Pain Med. 2004;5:276-280.

Manicourt DH, et al. Arthritis Rheum. 2004;50:3690-3697.

Varenna M. et al. Rheumatology (Oxford). 2013;52:534-542.