Abbott is holding a free national patient education event webinar series on July 25th, August 22nd, September 26th, and October 24th at 7p Eastern.
The webinars will focus on how Abbott’s neurostimluation therapy offers an FDA-approved, medication-free, long-term treatment option for chronic pain.
Feel free to join the free session that is most convenient for you. Each session will provide the same information.
Abbott is a proud sponsor of RSDSA.
Originally published on June 10, 2022
This is the fifth edition of the Diagnostic and Treatment Guidelines for Complex Regional Pain Syndrome (CRPS; also known as Reflex Sympathetic Dystrophy [RSD], causalgia). These guidelines have been sponsored by the Reflex Sympathetic Dystrophy Syndrome Association and are written by expert practitioners in each discipline that is traditionally utilized in the treatment of CRPS [1]. There is a fairly recent, excellent, rigorous systematic review of the treatment literature in CRPS [2] which confirmed there is only modest high-quality research in the area. Nonetheless, in this “evidence vacuum” we still have a responsibility to treat. Certainly, we must develop better evidence, but our patients cannot wait for that. Thus, although the authors of these practical guidelines all utilized a systematic approach to reviewing the available and relevant literature, they have also included less rigorous, preliminary research reports, often supplemented by extensive empirical experience. The authors perforce must also extrapolate from “related conditions” (e.g., neuropathy [3]). The research quality, clinical relevance and “state of the art” of diagnostic criteria or treatment modalities are discussed, sometimes in considerable detail. Where there have been no discernable updates in areas since the 4th edition, text from that has been kept, sometimes verbatim.
These guidelines are intended to serve as an aid to the informed practitioner. They are not intended to replace or supplant the clinician’s best judgment, experience, training and/or a careful consideration of the clinical context. Although every reasonable attempt has been made to minimize the bias of the authors, it must be recalled that, in context, all the experts are to a degree biased to “their” therapeutic approach.
Detailed sections are provided as a guide and informational source not only to the “expert” in CRPS therapy but also the primary practitioner who is interested. Levels of evidence are mentioned when appropriate (Table 1), so that the practitioner can better assess the modality under discussion and, if desired, to personally review the citations in detail. In the humanitarian spirit of making the most of all current thinking in the area, balanced by a careful case by case analysis of the risk/cost versus benefit analysis, we offer these “practical” guidelines.
In research funded by the RSDSA, scientists at the University of Bath in England are investigating a new treatment for CRPS that targets perception of and attention to the affected limb and surrounding space.
People with CRPS often report that the size and shape of their affected limb feels different to its true size or shape. People with CRPS also show changes in their attention to the affected limb and surrounding space. These changes to body perception and attention are reminiscent of symptoms that can arise after damage to certain parts of the brain. It has been suggested that pain and other symptoms of CRPS might arise as a result of errors in brain signaling about the shape and location of the affected limb. If this is the case, then it could be possible to treat CRPS using therapies that restore normal body perception and attention.
Dr. Janet Bultitude, a Lecturer (Assistant Professor) at the Centre for Pain Research and Department of Psychology at the University of Bath, is leading a team of researchers to investigate a new type of treatment for CRPS of the upper limb, called sensory-motor adaptation. Sensory-motor adaptation has been used for almost two decades to treat problems with perception and attention that occur following brain damage. The treatment takes only five minutes twice a day, and involves making simple movements while wearing goggles that distort the vision. Preliminary research at three independent research centres has shown that sensory-motor adaptation reduced pain and other CRPS symptoms in a total of thirteen patients with CRPS of the upper limb. Although these results are highly promising, since these studies did not compared sensory-motor adaptation to control treatment conditions it is possible that the benefits that were observed were due to some factor other than the treatment of interest. Dr. Bultitude and her team are taking the next step in investigating the potential of sensory-motor adaptation as a CRPS rehabilitation tool by conducting a double-blinded, randomized, sham-controlled trial of the treatment method.
They will recruit up to 52 people with CRPS of one upper limb who live in the United Kingdom. Participants will undergo two weeks of either real or control sensory-motor adaptation, which they will perform in their own home. Comparing the effects of real sensory-motor adaptation to a similar control treatment will be critical for learning whether sensory-motor adaptation has true benefits for CRPS patients. This research has the potential to significantly improve outcomes for patients with CRPS by offering a new treatment, and by discovering more about the relationships between body perception, attention, and physical CRPS symptoms.
To find out more about the study and to learn about eligibility, interested persons can contact Dr Janet Bultitude ([email protected]) or Ms Monika Halicka ([email protected]).
By Corey W. Hunter, MD for the RSDSA blog.
Most patients with CRPS can attest to the fact that many of the existing treatments for it are extremely limited. Recently, Ketamine moved into the spotlight and gave physicians and patients, alike, a great deal of hope that we were getting closer to an answer. Sadly, the data has been mediocre and insurance coverage remains a problem. Fortunately, there has been a substantial breakthrough in the understanding of CRPS and how to better treat it.
The dorsal root ganglion (DRG) is a small bundle of neurons located just outside the spinal cord. Previously, the DRG was believed to be a passive structure with no real involvement in creating or maintaining neuropathic pain. New evidence, however, suggested the DRG is actually responsible for the hyperexcitability of the central nervous system that leads to many of the symptoms associated with CRPS (i.e. allodynia and central sensitization). Combined with the fact that the DRG is so easily accessible, it made the perfect target for treatment.
Researchers found that by sending small electrical signals to the DRG, pain from things like CRPS could be substantially reduced: thus the birth of DRG Stimulation. This is actually a variation of a treatment already available called spinal cord stimulation with one major difference: the lead(s) are placed directly over the DRG(s) directing the stimulation solely to the neurons thought to be creating and perpetuating the pain involved in CRPS.
It has been available in other parts of the world for some time now and many of the practitioners already using it have been raving about its unbelievable track record. Dr. Liong Liem of the Netherlands has arguable more experience with DRG Stimulation than anyone else in the world. He published some of the first data on it in 2013 where he showed an impressive 56% overall reduction in pain at one-year – this included several types of pain, CRPS being the second most common diagnosis in that particular publication.
Most recently, the results from the U.S. clinical trial called the ACCURATE Study were publicly reported. The results broke all expectations – at one-year, 74.2% of patients reported greater than 50% pain relief with 1/3 of the total patients treated with DRG Stimulation reporting a staggering 80% or more reduction in pain. The most common diagnosis in this study was CRPS.
The Food & Drug Administration (FDA) just granted approval to DRG Stimulation for use within the U.S. as of February 2016 for the treatment of CRPS. Currently, the only device capable of DRG Stimulation is called the Axium™ which is available exclusively through St. Jude Medical™. There are a handful of centers across the nation that will be performing this cutting-edge treatment starting April 2016.
Such a treatment could change everything we know about CRPS and how to manage it. Hopefully, this will be the large step forward so many sufferers have been waiting a lifetime for.
By Guest Blogger Dr. Katinka van der Merwe of the Spero Clinic
Disclaimer: As a chiropractor, I may not claim to treat specific conditions or diseases. My only objective is to find interference in the Central Nervous System and to remove it, enabling the body to function at its optimum potential once again. I am an independent doctor. Our clinic uses a unique combination of treatments. While these treatments may each individually be taught by various other groups/doctors, we are not affiliated with anyone else.
I often find myself talking to other physicians across the globe, and invariably, they ask me the same question: ‘Why RSD/CRPS? Why in the world would you choose to specialize in such a difficult condition?’ I always answer the same way: ‘How could I not? I have always maintained that CRPS picked me, I didn’t pick it. What do I mean by that? Let me share a little bit of my history with you.
I grew up in a family where I was taught that the body is a self-healing, self-regulating organism by my chiropractor dad. I was three years old when I decided that I too, wanted to be a chiropractor. I always believed that I would help people and make a difference after graduating. My actual first eight years in practice were very disappointing, however. I found myself treating ‘typical’ chiropractic patients. Neck pain, back pain, headaches and only the occasional complicated case. I felt bogged down, bored. I wanted to live with passion. I wanted to help people get their lives back. I wanted to be able to treat the most hopeless of hopeless. Where were my miracle cases? Just as I was ready to change careers, my life path changed dramatically.
I happened to be at a conference in Florida where I sat in a lecture taught by Dr. David Pascal, DC. Dr. Pascal practices in North Carolina, and works with some of the top U.S. Olympians as well as very complicated neurologic cases. That day, he was talking about helping a paraplegic patient to walk again after years of being confined to a wheelchair. I raised my hand and asked him what happened to that patient. I will never forget the two words that changed my life: “Uh…walking?” Walking?!? I was enthralled, as one of my dear patients, Tommy, had just become a full quadriplegic after a tragic accident. Could I perhaps help Tommy?! I followed Dr. Pascal into an elevator after his lecture and begged him to mentor me. I will never know why, but he agreed to take me under his wing. He told me that I was in for a tough road… and I embraced it.
One of the first techniques I learned centered around restoring balance to the Autonomic (automatic) nervous system, specifically the Vagus nerve (more about this nerve later). It was known to be extremely effective for Fibromyalgia. I was astounded by my results, and wondered what other kind of conditions I could help. Around this time, I met Carlos. Carlos had suffered from full body CRPS for six years, affecting his digestive system. When I met him, he could only eat a few spoons full of chicken broth at a time. This would cause him to curl up in excruciating pain for hours after each meal. Carlos was white as a sheet, and utterly without hope. His pain was carved into his face for the world to see. He came in with his wife. She told me that she was afraid that Carlos would take his own life if they could not find relief soon. She had convinced him to try just one more doctor. With them that day was their nine- month old baby, Sean. I remember looking at that little boy and trying to imagine his life without his father in it to see him grow up. Carlos finally looked up and said: ”You can’t help me. No one can help me. I am here because my wife asked me to come.”
Here was my moment. I felt the pressure of the world on my shoulders. What if I couldn’t help this man? It was my dream to treat patients like him, and when he finally arrived, I was petrified. My dad gave me a little pep talk in the back. “You asked for this. Patients will not come to your door step unless you could make a difference. It is not your responsibility to heal him, it is your responsibility to do your best. Now, get out there and do your thing!” And so I did. To my astonishment, his pain responded beautifully, dropping down dramatically. Carlos left my office that day in zero pain. He went straight to a Luby’s cafeteria (fine dining here in the South) and consumed his first full meal in five years. He came back the next day a changed man. His color was back, and also what I refer to as his ‘life spark.’ Twelve weeks later Carlos was completely pain- free. Today, almost five years later, he is still pain- free and working as a pastor. He now travels all over the world and has since faced several physical challenges, such as gallbladder surgery, with no sign of the CRPS rearing its ugly head again. Carlos considers himself to be in full remission these days. He always says that I saved his life, but honesty, Carlos saved mine. I was hooked. (You can watch Carlos’s original YouTube video here, https://youtu.be/tC_JyDfvexM right after he started treatment. You can watch his most recent video here https://youtu.be/pYE0aW1cTh8 that was recorded three years after he completed treatment).
From that day on, I became obsessed with helping people who suffers from this horrible, life robbing condition. I hunted down doctors and techniques from all over the world, determined to figure out how to beat this condition. If I heard that someone was having success treating CRPS, I wanted to know what they knew. Along the way, I got to witness some incredible recoveries. I was amazed at the results my staff and I were getting, yet frustrated that so few knew about it. I soon realized that another book was in my future. I could not sit on the information I now had in my hands, not sharing it. While researching my book, I realized that CRPS has touched many other doctors in a similar way. You cannot treat this condition and witness the path of destruction that it cuts across people’s lives, without becoming singularly obsessed with helping people who suffer from it recover. I am hardly the first physician to ever develop a passion to beat this thing. Early on my new path, a doctor once told me that seeing miracles, and being part of those miracles, is a very addictive thing. I can only agree with that statement wholeheartedly.
What makes our treatment different?
While learning how to treat the neurologic symptoms of CRPS, my basic holistic training and upbringing has come in very handy. That training has taught me that, unlike the mechanistic approach (that which most medical doctors follow today), the body is not like an engine. What I mean by that is that you cannot just treat different parts, forgetting that every part is connected to every other part. The body is incredibly intelligent, far above our understanding as human beings. Just think about all the trillions of functions happening in your body every second of every day, things we cannot even comprehend. Your immune system is fighting off invaders and cancer cells every day. Trillions of cells are being repaired or replaced, hormones are being produced, vitamins are being gathered from the food you eat and delivered to the cells that need them. All of this without a second thought from you. We readily expect our body to do these things every day. Yet, we just accept that somehow, our bodies become broken beyond repair, not smart enough to beat ‘incurable’ conditions. We accept that this power now rests in doctors’ hands, and that we will find ‘magic’ in some form of surgery, device or medication. Something outside of yourself.
All the scientists in the world cannot even grow a hair. Yet, our body does that every day. The intelligence that runs this all day doesn’t just desert some of us one day, causing us to suffer. So, how do we get sick then? Something interferes with the way our bodies are supposed to run and heal from the inside out. In my experience, and always in the case of CRPS, this interference typically happens in the Central Nervous System.
The Central Nervous System (CNS) is the system that runs everything in your body. It controls movement, function, your immune system, and pain. It also controls healing. The Autonomic Nervous System (ANS) is a subsystem of the CNS. It is the part of your brain that runs everything automatically, without you having to think about it. It is divided into the Sympathetic (fight or flight) Nervous system (SNS), and the Parasympathetic (rest or digest) nervous system (PNS). The SNS is responsible for saving our lives when we are being attacked. It is vital, but not overly concerned with healing, sexual function, digesting food, or relaxing. The PNS is. The one thing every CRPS patient has in common is that they are stuck in Sympathetic overdrive, meaning, instead of their nervous system being nicely balanced between these two states, they are stuck in Sympathetic overdrive. This often happens long before they ever develop CRPS.
The Vagus Nerve (VN) is one of twelve pairs of Cranial Nerves (CN) that run directly from the brain to the body, instead of from the spinal cord. The VN is the tenth cranial nerve and is the main Parasympathetic cranial nerve. The Vagus Nerve (meaning “wandering nerve”) has multiple branches that diverge from two thick stems rooted in the cerebellum and brainstem that wander to the lowest viscera of your abdomen, also connecting to your heart and most major organs along the way, such as the lungs. The VN supplies motor Parasympathetic fibers to ALL the organs except the adrenal glands, from the neck down to the transverse colon. The VN is responsible for many different tasks, including (but not limited to): heart rate, digestion, sweating, speech, coughing, fainting, and vomiting, to name but a few. Remember, people who suffer from CRPS also suffer from Sympathetic dominance (the schoolyard bully), causing the Parasympathetic nervous system to be suppressed and to shut down. This means that people who suffer from CRPS also suffer, by definition, from an underactive VN.
An underactive VN may be a result of an injury to your upper cervical spine (neck) directly, such as an old whiplash injury, a tailbone injury (affecting the neck indirectly) or as a result of an abnormally functioning ANS. Either way, malfunctioning of the nervous system is involved (by definition) when the Vagus Nerve is messed up. This will cause inflammation in one part (or all the parts) of the body. Basically, inflammation causes your nerves to be ‘on fire.’ What does the Vagus nerve have to do with inflammation? A lot, as you may guess.
Dr. Kevin Tracey, a neurosurgeon in New York, has done extensive research regarding this topic. Dr. Tracey set out to prove his hypothesis that the brain might be using the nervous system, and more specifically, the Vagus Nerve, to tell the spleen to switch off inflammation everywhere in the body. He derived at this idea before no one .has ever, after injecting an anti- inflammatory drug into a rat’s brain in an effort to minimize the effects of a stroke. To his astonishment, he found that this action not only turned off inflammation in the brain, but turned off inflammation in the entire body.
If Dr. Tracey was right, inflammation in body tissues was being directly regulated by the brain. This was an extraordinary idea. Before, no one has ever really explored whether the cells of the immune system were being directly controlled by the Vagus Nerve. Now, it was emerging that it was entirely possible that the brain, via the Vagus Nerve, was the force that governed it all.
His first study involved cutting the Vagus Nerve in rats. When Tracey and his team injected the anti-inflammatory drug into the brain, the drug no longer had an effect on inflammation in the rest of the body. Viola! The second test was to somehow stimulate the nerve without any drug in the system. “Because the Vagus Nerve, like all nerves, communicates information through electrical signals, it meant that we should be able to replicate the experiment by putting a nerve stimulator on the Vagus Nerve in the brainstem to block inflammation in the spleen,” he explained. “That’s what we did and that was the breakthrough experiment.”1
The Vagus Nerve works as a two-way highway, passing electrochemical signals between the organs and the brain. In chronic inflammatory disease, Tracey figured out, messages from the brain telling the spleen to switch off production of a particular inflammatory protein, tumor necrosis factor (TNF), weren’t going through. Low Vagal tone (or function) causes inflammation in the body. High Vagal tone (or function) causes the reversal of inflammation.
Good communication between the immune system and the brain is therefore vital for controlling inflammation. The inflammatory reflex is a mechanism in which afferent (body to brain) VN signaling, activated by cytokines or pathogens, is functionally associated with efferent VN -mediated output to regulate pro-inflammatory cytokine production and inflammation. VN stimulation suppresses local and serum pro-inflammatory cytokine levels 2. Cytokines are tiny proteins, acting as messengers. They can tum off or turn on inflammation anywhere in the body.
Of course, the problem in the body of a CRPS patients is that the VN is anything but communicating witl1 the body, and vice versa. It is much more like a traffic- clogged freeway, where few signals are making it through in either direction. Is it any wonder then that CRPS patients are literally burning alive from the inside?
HOW CHRONIC INFLAMMATION CAUSES PAIN IN CRPS
Remember cytokines? It has been shown that certain cytokines are involved in not only the initiation but also the persistence of pathologic (abnormal) pain by directly activating nociceptive sensory neurons (nocireceptors are the nerves which sense and respond to parts of the body which are damaged). A good example of nociceptive pain is the pain experienced after burning. Certain inflammatory cytokines are also involved in nerve injury (and inflammation-induced) central sensitization.
If you suffer from CRPS, you should care a lot about central sensitization. It is based on the principle that basically, pain itself may change the way the central nervous system works (meaning the brain and spinal cord), causing more pain, and causing the patient to become hypersensitive with less provocation. Sensitized patients are not only sensitive to things that would cause normal people pain, but also become sensitive to things that shouldn’t hurt. Sound familiar? Any kind of noxious (‘bad’) stimuli can trigger this reaction. Anything that hurts the skin, muscles, or organs. This pain can become constant and stick around even without provocation.
Certain inflammatory cytokines in dorsal root ganglion (or DRG), a collection of afferent sensory nerves that exists just outside of the spinal cord, injured nerves or skin, are known to be associated with specific pain behaviors and with the abnormal spontaneous activity from injured nerve fibers or neurons. Following a peripheral nerve injury, immune cells that gather around the injured nerve(s) secrete cytokines. Localized inflammatory irritation of the dorsal root ganglion (DRG) not only increases pro-inflammatory cytokines but also decreases anti-inflammatory cytokines. There is abundant evidence that certain pro-inflammatory cytokines ate involved in the process of pathological (abnormal) pain 3. It is like a wildfire, feeding upon itself to then start burning out of control. In a nutshell, it causes the symptoms of CRPS.
In addition, a malfunctioning VN will also cause immune system problems, digestive issues (typically treated as a separate problem in CRPS patients), sleeping problems, and a lack of sexual desire.
Our treatment focuses on restoring immediate normal flow, tone and function to the VN. Our treatment has no side effects. If our treatment can help you, we typically will notice a dramatic decrease in pain in the first week, if not the first day. Unlike most treatments out there today, we do not aim to disrupt or numb the pain signals. We feel that that approach is invasive and temporary, like a band aid. While we cannot legally claim to heal CRPS, we do aim to uncover abnormalities in the CNS and restore balance to the Nervous System. The healing occurs from the inside out.
Why does the VN malfunction? It can happen for several reasons, or usually a combination of factors. I like to refer to CRPS as not caused by one single factor, but rather a combination of factors, or ‘the perfect storm’. These factors may include (as previously mentioned), neck and/or tailbone injuries, generic factors, toxicity, inflammation, viral or bacterial infections, emotional stress, and many more.
Our ‘Three Punch’ System
Through the years, we have perfected our treatment regimen into something I now refer to as our ‘Three Punch’ system. As in, three punches and you ate out. We first use a technique that gently removes any pressure from the VN, instantly restoring function to that nerve and causing it to shut down inflammation in the nerves. What does this mean to you? An immediate decrease in pain. This procedure has to be repeated very often over an initial ten week treatment period. This is because the ligaments in your upper cervical spine may be used to the old ‘wrong’ position. There may also be scarring in the spine and/ or soft tissues. All of these structures have to become used to their new corrected position. Think of braces on your teeth. It won’t work if you only wear it for one day.
Second, we treat the body with Frequency Specific Microcurrent (FSM). What is Microcurrent? It is a very small current, too small to be detected by the sensory nerves. Therefore, it is not painful. It is the same kind of current your body naturally produces in each cell. It is also FDA approved. At least one study has shown that microcurrent increased ATP production in rat skin 500%. ATP is the chemical that the body uses for energy in order to perform all its functions, including healing. The current also increased amino acid transport into the cells by 70%, as well as waste product removal4•
Carolyn McMakin, DC is one of my favorite mentors. She and George Douglas DC developed a system whereby we use specific frequencies clinically, using the FSM device, effective in treating different conditions, including CRPS. Doctor McMakin used this system to treat her own son successfully for CRPS. When combined with our two other systems, we find that this treatment is an incredibly effective part of the treatment of the neurologic symptoms of CRPS.
Lastly, we use a system called Quantum Neurology, developed by Dr. George Gonzalez, DC. This system was designed to rehabilitate every aspect of the Nervous System. Dr. Gonzalez developed this system in order to treat his wife, Lori, after she suffered a spinal cord injury. After seeing countless famous doctors all over the country, Dr. Gonzalez realized that no single system existed that was designed to rehabilitate the nervous system. His work was based upon the premise that if the body suffers from a chronic injury, the brain will eventually start ‘ignoring’ this injury. The reason for this is that the injury will act as an ‘energy vampire’, robbing the rest of the body of energy on a daily basis in order to rush the stolen energy to the sight of the chronic injury, much like a slow ‘energy leak’.
In order to heal ‘glitches’ in the nervous system, we must first ‘show’ the brain (or remind it) that the nervous system is injured, and then assist the brain in healing the injury. We use this system to very gently heal the abnormal sensory nerves (causing you to be in pain when exposed to heat, cold, deep pressure, pain, light pressure, vibration, and circumferential pressure, such as tight clothes). This is not the same as the physical therapy sensory rehabilitation that most CRPS patients are used to, that focuses on continuing to expose the sensory nerves to a specific sensory stimulation, hoping to cause a ‘numbing down’ effect after a while, almost like a callous. Instead, our system consists of the premise that the injury is pointed out to the brain, and then gently assisted in fixing the ‘glitch’, often instantly, although re-injury may quickly happen in the beginning. The nervous system has to build up stamina and strength, at which point the corrections become permanent.
As stated previously, our system works best when all components mentioned above are used together. There are no side effects to our treatment. Unfortunately, at this time, we are the only clinic in the US to apply the ‘three punch’ system. That means that you have to travel to Arkansas for ten weeks in order to get treated in our clinic.
The ‘Secret Sauce”
One thing I haven’t mentioned yet is what I refer to as ‘the secret sauce’. What do I mean by this? The secret ingredient to every patient I have ever watched recover is spirit. It takes tremendous courage to keep looking for ways to recover, regardless of how many times you have been disappointed in the past. It takes grit! I often find myself across from a new patient, holding their two- inch thick medical file, filled with medical records. Each one of those records represents a time when you sat across from a doctor, looking for answers, looking for help, hoping that this time will give you back your life again. My heart goes out to you, it truly does. Yet, you cannot give up. You cannot stop looking for ways to aid your body in recovering, no matter how many times you have been disappointed.
The other side of this coin is that you need a doctor who, above all else, truly cares about you. Doctors are not gods. They are not power figures who may not be questioned. We work for you. Like any good employee, if we are to help you, we have to listen to you and care about you. I throw my passion into every single case that I treat. Every patient represents a goal to me. When listening to my patients, I don’t just want to hear about their pain, I want to know what CRPS took away from them. What is it that they miss? Is it to walk their beloved dog? To travel with their husband?
To work in the job they love? To enjoy their grandchildren? These are the things I want them to get back.
This is the reason I have a fire burning in my heart, and passion filling my days. It is not just about beating the monster… it’s about being charged and blessed with the responsibility to help guide people just like you back to life, instead of merely surviving and living ‘around’ your pain. You deserve to live with passion again. You deserve to be happy. You deserve to be alive again with joy.
References
1 K. Tracey. The inflammatory Reflex. Nature, 2002.
2 L. Borovikova. Vagus nerve stimulation attenuates the systemic inflammatory response to endotoxin. Nature, 2000.
3J. Zhang, J. Cytokines, Inflammation and Pain. International Anesthesiology Clinics, 2007.
4N. Cheng. The effects of electric currents on ATP production, protein synthesis and membrane transport in rat skin. Clinical Orthopedics, 1982.
Dr. Katinka van der Merwe grew up in South Africa before immigrating to the United States when she was twenty. She was formally trained as a chiropractor. She received her degree in 1999 from Parker College of Chiropractic in Dallas, TX. Dr. Katinka has since expanded her coursework in Neurology, Biological Medicine, and Junctional neurology, focusing on helping complicated and ‘hopeless’ neurologic cases, using cutting edge techniques that focus on restoring proper junction and balance to the Central Nervous System. Dr. Katinka is qualified as a Quantum Neurologist and has also studied under Dr. Thomas Rau, MD, clinical director of the world famous Paracelsus clinic in Switzerland. Dr. Katinka is the author of ‘Taming the Beast: A Guide to Conquering Fibromyalgia”; available on Amazon, as well as the soon to be released “Putting Out the Fire: New Hope for RSD/ CRPS.’ Dr. Katinka was the recipient of the prestigious ‘Rising Star’ award in Tampa, Florida in 2012, as well as several awards for her ongoing work with RSD/ CRPS. Dr. Katinka lectures extensively to fellow physicians as well as the public. She practices in Northwest Arkansas where she lives with her husband and four children.
Written by Jim Broatch, RSDSA’s Executive Vice President, Director
This month, RSDSA is partnering with The Coalition Against Pediatric Pain and The US Pain Foundation to co-sponsor a free camp for children living in chronic pain: THE CENTER FOR COURAGEOUS KIDS in Scottsville, Kentucky. The camp is July 14-17, 2015 for children ages 7-17. The goals of the summer camp are FUN, FUN, & FUN! It is the first time we have ever found a camp for children living in pain. The camp is totally FREE for all participants and a parent/guardian who will stay at the camp with his/her child. Please go to tcapp.org and fill out an application today!!! Space is still available. Act now before it is too late!
The recent June conference in Denver was an outstanding success. Our attendance topped 110 individuals and caregivers. One couple drove 14 hours from Arkansas to become more educated about current treatment options. Another traveled from Massachusetts! We are currently editing the presentations for viewing on our YouTube channel. We have uploaded 78 videos with more to come! Plans are underway to host the Integrated Solutions to CRPS in Cherry Hill, New Jersey on September 11, 2015 and in Orange, California on February 27, 2016. If you have any questions, please email Samantha Barrett at [email protected].
Bob Lane, a member of RSDSA’s Board of Directors has pioneered the development of a 1-credit hour CEU for nurses on Complex Regional Pain Syndrome (CRPS): Causes, Diagnosis and Treatment. If you are interested in teaching the course in your area, or want to see where a course may be coming next, please contact Bob Lane at [email protected].
RSDSA is also tackling the thorny issue on how individuals with CRPS are treated by Emergency Department (ED) staff when they go to obtain pain relief for an unbearable pain flare. The answer may be IV Ketamine. ED staff are very familiar with Ketamine, but not as a rescue agent for breakthrough neuropathic pain. We are exhibiting at the American College of Emergency Physicians in October to “broach” this intervention.
In the CRPS research arena, RSDSA via its International Research Consortium (IRC) has recruited over 35 established and productive CRPS clinics around the world to join the IRC. The IRC wants to encourage multi-center clinical trials of novel therapies. Just planting a seed of hope!
The RSDSA Board of Directors in May approved a pilot genetic study of CRPS. This project will address a fundamental question regarding CRPS: Why do some individuals develop CRPS and others do not despite experiencing similar injuries? Specifically, this project will examine whether individuals who develop CRPS differ from those who do not in terms of a wide array of genetic differences (in DNA), differences in how genes are expressed, differences in the proteins that make up the body, and differences in how chemicals are metabolized by the body.
This project will examine a vast amount of highly detailed genetic, protein-related, and metabolism-related information collected as part of a previously completed Department of Defense research study of 116 military veterans experiencing pain following traumatic injuries that required limb amputation. This information has never previously been examined. Study patients have been categorized as having CRPS, non-CRPS residual limb pain, or no limb pain. The study will examine whether development of CRPS rather than non-CRPS limb pain (or no pain) after amputation is linked to genetic differences in broad regions of the DNA sequence never previously explored in terms of CRPS risk.
It will also examine whether CRPS risk is related to differences in how a broad array of genes are expressed, as well as differences in proteins or metabolism. The study will additionally test whether severity of CRPS symptoms is associated with these genetic or other factors. This project will provide highly detailed information on a range of potential risk factors for developing CRPS that have never previously been examined. Results may help provide new directions for future research seeking to understand the mechanisms of CRPS and potentially suggest new possibilities for treatment of CRPS.
It is a very exciting and hopeful time for RSDSA and the CRPS community. Stay tuned! Don’t forget to follow us on all of our social media platforms for live updates:
Twitter: @rsdsa
Facebook: facebook.com/rsdsa
Instagram: @rsdsa_official
YouTube: youtube.com/user/RSDSAofAmerica
Written by Kenneth R. Lofland, PhD
CRPS is a painful disorder that continues to challenge the medical community. The cause, course, treatment, and outcomes are highly variable and remain a source of vigorous debate among the brightest professionals specializing in chronic pain.
Biofeedback is a non-drug intervention that is used to treat patients with a variety of medical conditions. Taken simply, biofeedback can be defined by breaking down the word as “bio,” referring to the body, and “feedback,” receiving information about the body, that one would ordinarily not be aware of. A simple example of how biofeedback can work is the case of a patient with poor circulation to the extremities, often referred to as Raynaud’s disease. When this disorder is severe, coldness, pain, and poor healing results in the extremities due to decreased blood flow. It can increase the risk of frostbite and minor cuts to fingers or toes becoming infected, not healing properly, and even requiring amputation. Improving blood flow to the extremities through thermal biofeedback is one of the most effective treatments for this condition.
How does biofeedback work?
Although it sounds amazing that anyone can learn to alter blood flow, it is actually quite easy to learn. We all have a “flight or flight response.” If I am to give a presentation in front of 500 people, I will notice my hands get cold and clammy. When physical or psychological stress occurs, our bodies instantly secrete adrenaline, our breathing rate changes, our blood pressure increases, our heart rate increases, and our blood flows away from the periphery toward the core of our body, thus the cold, clammy hands. When the stressor is over, our bodies relax and these physiological responses reverse. Learning deep relaxation techniques, in combination with receiving feedback from machines measuring small changes in temperature, can advance this process and allow the blood vessels to dilate (open up) even more, allowing more blood to flow out to the periphery. So in the case of the Raynaud’s sufferer, learning deep relaxation techniques and biofeedback allows for increased blood flow to his or her hands. This improved circulation increases hand temperature to normal levels, decreases pain, and improves the body’s ability to heal any cuts or injuries naturally.
How can biofeedback help my CRPS?
Changes in blood flow often accompany CRPS. Learning deep relaxation techniques can be paired with a biofeedback device which measures skin temperature in order to help a CRPS sufferer learn to relax deeply, increase blood flow to a part of the body with a restriction in blood flow, increase the temperature of that part of the body, and decrease the pain.
What does the science say?
Biofeedback has not been subjected to the same level of scientific scrutiny as many medications. More, larger scale, and better controlled research studies are needed in this area, as is funding to support this type of research. Several studies have been done evaluating biofeedback for pain and found positive effects. For example, Grunert et al (1990), found that 20 patients with documented CRPS for 18 to 60 months and who failed to respond to a variety of treatments underwent thermal biofeedback with relaxation training as a part of counseling treatment. The results found that patients were able to significantly increase their blood flow and significantly decrease their pain levels (p<.0001). This pain reduction was maintained at 1-year follow-up assessment and 14 of the 20 patients had returned to work. The conclusion was that this intervention was effective to reduce pain in CRPS/RSD for the long term, even in patients who had failed prior treatments. Multiple other case studies exist but I reiterate that additional well-controlled treatment outcome studies are needed with larger sample sizes.
As a clinician I am very enthusiastic about the use of thermal biofeedback for the treatment of CRPS. Specific sources for this enthusiasm include:
1. The number of case reports indicating successful outcomes, even in cases where other treatments have not helped the CRPS patient (see above)
2. The common sense aspect that at least one hallmark symptom of CRPS, namely decreased blood flow and temperature in the affected area of the body, can be reversed with thermal biofeedback
3. My own clinical experiences, which have demonstrated positive results using thermal biofeedback with CRPS sufferers
4. It is one of the few treatments in medicine that has essentially no known negative side effects. There are very few other treatments available to chronic pain sufferers with no negative side effects.
How do I find a biofeedback provider?
First, some caution must be taken when identifying a biofeedback provider. While being a licensed clinical psychologist requires a specific doctoral degree and a license, and being a licensed physician requires a specific medical degree and a license, being a biofeedback therapist does not require a specific degree or license. Therefore, practitioners at much different levels of training and experience may be presenting themselves as biofeedback therapists. It is always best to ask a prospective provider to tell you about his or her training in general, specific training in biofeedback, and what conditions he or she specializes in when treating with biofeedback. Knowing the individual’s level of training, specialization, office practices, etc., can make you a more informed client.
Several states have biofeedback societies with web sites, such as the one in Illinois www.biofeedbacksocietyil.org. These sites generally have a list of practitioners that are members of the state biofeedback society. Membership in these organizations does not indicate any level of training or expertise. However, health care professionals with an interest in biofeedback can be found there.
Also, a national organization exists, the Biofeedback Certification Institute of America (BCIA) that certifies some individuals who chose to learn biofeedback through this particular organization. Being a member of this organization does indicate a certain basic level of biofeedback training, but it does not guarantee the degree to which a provider has specialized or the amount of experience a provider has had. Further, not being certified by this organization does not indicate a lack of training or experience of those who may have gotten trained via other routes, such as in graduate school.
1. Grunert, BK, Devine, CA, Sanger, JR, Matloub, HS, Green, D. (1990). Thermal self-regulation for pain control in reflex sympathetic dystrophy syndrome. Journal of Hand Surgery. 1990; July 15(4): 615-618.
Dr. Lofland is the Director of Pain Studies and the Director of Psychological Services at the Pain and Rehabilitation Clinic of Chicago. He is past President of the Biofeedback Society of Illinois and the current President of the Midwest Pain Society. He is both a dedicated clinician, treating individuals with pain syndromes such as CRPS, and an active scientist, researching the most effective treatments for many chronic pain syndromes. He can be reached for follow-up questions at [email protected].
Pain is a more terrible lord of mankind than even death himself. – Albert Schweitzer.
Too often, life changes on a dime as my pastor frequently tells our congregation. Just ask any person suffering with CRPS when they developed CRPS/RSD and they can immediately relate the date and time. So it was with Cynthia Penaskovic, a vibrant naval pediatric flight nurse who developed CRPS/RSDS 25-years ago after a car accident in southern California. Her doctors at Scripps Torrey Pines in San Diego called it “one of the worse cases of widespread RSDS they had even seen.”
Joan Penaskovic, Cynthia’s sister spoke of her subsequent “solitary life spent creating exquisite beaded art which she often donated, until she could no longer hold the threads. She was blessed with extraordinary grace and courage, providing loving support for her widowed mom, family and friends, when she was the one in dire need.” Sadly, Cynthia lost her 23-year-old battle with CRPS in November 2013.
Joan Penaskovic and Veronica Meyers, Cynthia’s mother wrote to RSDSA to inquire about establishing a Cynthia Penaskovic Memorial Fund. Cynthia envisioned a fund that would “serve as a lightning rod for CRPS/CRPS Research Only so that “no one would ever suffer the way I did.’ The RSDSA Board of Directors unanimously accepted a very generous donation to establish The Cynthia Penaskovic Memorial Fund. It was stipulated that the funds would be donated to promising laboratories and scientists through fellowships and grants targeting research for a cure.
Serendipitously their gift arrived at the right time. RSDSA has recently established an International Research Consortium with the goal of linking laboratories worldwide to foster greater collaboration amongst scientists researching CRPS; thus producing more robust studies leading to better treatments and hopefully a cure.
Joan Penaskovic asked us to encourage the CRPS community to join in this effort. Her simple plea is, “Do not let Cynthia’s suffering be in vain. It was her last wish to help drive funding for Research 
and with your help we can cure RSDS/CRPS. Donate now.”
To donate to The Cynthia Penaskovic Memorial Fund, visit https://rsds.org/donate/ and give generously in Cynthia’s memory (make sure that you write in memory of Cynthia in the box on PayPal’s second page) or in the memo line of your check. Thank you for your generosity.
In the last fifteen years, only two randomized, placebo-controlled trials for CRPS have been conducted in the United States. Sadly, both were unsuccessful.
Our optimism is rising, however, with the U.S. Food and Drug Administration’s declaration in 2014 that Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is officially a rare disease. The designation is a strong catalyst for new drug development. Developers qualify for clinical trial tax incentives, may sell the drug without competition for seven years, and may enroll fewer patients in a trial (as recruiting is more difficult in small populations).
Four pharmaceutical companies are now considering clinical trials for CRPS in the United States.
The first out of the gates is Grunenthal, a Germany-based, family-owned company. The trial medication is neridronate, an amino-bisphosphonate. Attention mounted for neridronate after a startlingly successful small trial in Italy, which was was published in the journal Rheumatology at the turn of 2013. The Italian trial’s inclusion criteria were strict; individuals whose CRPS onset was greater than four months were excluded. The American trial inclusion criteria are not as strict, with the exception that individuals with CRPS Type 2 are excluded. (The diagnosis of CRPS Type 2 is made when specific nerve damage can be detected, whereas for Type 1 such damage is not evident.
Grunenthals’ recruitment for the neridronate trial started in early April 2015.
The bisphosphonate class of drugs has been used overseas to treat CRPS for years. Querying PubMed for bisphosphonates for CPRS will reveal a small trove of published research (more than 20 papers) dating back to 2002. (PubMed is a great website to bookmark to search the latest scientific research. Again, this search engine indexes published research, which may not prove fully accurate after deeper scientific investigation.)
Currently, two other pharmaceutical corporations are submitting plans to the FDA for clinical trials that will evaluate therapies for a CRPS indication. It’s an exciting time for all individuals affected by CRPS. Stay tuned!
