I Have Hope That I Can Be a Light in the Darkness

Written by Patty S. for the RSDSA blog.

This past April, I celebrated my 30th year of having CRPS and only having the diagnosis 28 years. Where does the time go when one is having so much fun?

In 1993, I was the middle car in a three-car accident. I hurt my neck and back. It took a long time to get better. Yet something strange happened to my right arm – it would swell up, turn red, and burn, then change to blue, feel cold, and still burn. I saw 20 doctors over two years, and nobody could figure it out. They finally said I might have Reflex Sympathetic Dystrophy (RSD), now called Complex Regional Pain Syndrome (CRPS), a rare illness with no cure. They told me to get used to the pain, because I would have to live with it forever.

I went to a psychologist for psychological testing. He knew about CRPS and suggested I see Dr. Kirkpatrick in Tampa. By the time I saw Dr. Kirkpatrick, my right arm was so sensitive I couldn’t touch it, and each finger was almost three inches wide. Dr. Kirkpatrick had a plan to help me get better. He gave me 50 articles to read about CRPS.

The doctor’s treatment plan started with six blocks on my ganglionic nerves twice a week. It worked, and I got a confirmed diagnosis of CRPS with some hope. I had many more rounds of blocks, and I even had surgery to remove part of my sympathetic nerves. I thought I was cured and went back to work part-time. But every six months, I had to get more blocks because the pain came back.

In the following five years, I had two more car accidents, and the CRPS spread to my left foot, hip, face, head, and whole left arm. I had almost 100 blocks in a year, plus many other treatments like hypnosis, TENS unit therapy, water therapy, physical thearpy, and more. I even tried something called the “burnout method” that hurt so bad it made me pass out, but it didn’t work.

In 2008, my right arm and left leg got much colder than the other side. More blocks and ketamine were added, and I learned how to do biofeedback. But my regular doctor couldn’t help anymore, and in 2010, new doctors said I needed on disability. That’s when I lost hope, lost friends, and couldn’t go to the beach. I had ketamine infusions, more blocks, and “The Suicide Disease” took over. I lost hope yet had to be the caregiver of the family.

By September 2022, I had reached my end. I felt isolated. Stiffness and swelling made me fall and suicide was all I thought about. I lost all hope. I hadn’t smiled or laughed for years.

Then I was asked to try out a program called Override, in March 2023. One of the pain coaches, Brenda, called me and told me about Override’s virtual Comprehensive Pain Program that might help. It involved seeing a team of pain specialists including a pain physician, psychologist, physical therapist and health coach that all actually worked together on the same team. They would also teach me about pain science and how to take control of my pain. And I could participate from home since the treatment was all virtual. 

I was very skeptical and thought it wouldn’t work, but I decided to give it a try and postpone suicide for six months.

I listened, practiced, and learned a lot about managing pain with Override’s team. Three months into it, I still had bad pain days, but within 40 minutes without any pain medication, I could reduce my pain from a 10 to a 5 using a technique Override taught me called deep breathing and visualization. That was faster than a pill would work! I was even able to sleep more than 25 hours a week.

Four months into Override’s program, I could stop any suicidal thoughts and started having a little hope. After 30 years of pain, I learned to accept it. I had a little control, felt calmer, and could smile. In five months, I could smile more, manage pain better, and my self-esteem went up. I could laugh without it hurting, and I could reduce pain in 27 minutes. I had hope and could achieve my goals.

Since completing my program at Override after nine months of treatment, I have peace and joy five out of seven days a week. It’s not perfect, but it’s pretty unbelievable compared to where I was.

I recently ate out at a restaurant, went to church and sat through services, and attended a prayer group. I haven’t done these things in 18 months. Now that I’m getting out, I can talk to someone other than my dog, and he’s grateful!

Just months ago, I didn’t think I had any purpose in life except to suffer. Now, I’m planning to volunteer with an organization starting March 2024. I have hope that I can be a light in the darkness, and I know I have a future thanks to Override. I am getting better at the tools, yet would still like a cure.

Learn more about Override via their website and our June 2023 livestream.

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FDA Approves Full Body MRI for Abbott Proclaim DRG Neurostimulation Device for CRPS Lower Limb Treatment

Abbott says four out of five people who are implanted with its Proclaim DRG device experience significant pain relief and improved quality of life.

The new FDA approval now allows patients to receive MRI scans while implanted with the device, eliminating the need to sacrifice MRI imaging to access this type of pain relief.

By James Doulgeris, Chairman, RSDSA Advisory Committee

The Proclaim DRG provides targeted relief for people with complex regional pain syndrome (CRPS) Types I and II of the lower limbs. It stimulates the dorsal root ganglion (DRG) clusters of nerve cells found along the spine providing “significant pain relief” in four out of five patients. 

This implant, however, has come at a cost because patients with the implant were not able to get MRI imaging anywhere in the body before this approval except in specialized facilities. Now they can at any imaging center.

If you have this device implanted, or are considering having one implanted, you will find more information in Abbott’s press release or by consulting with your surgeon.

Updates are provided as a service of your RSDSA Advocacy Committee

Contact us at [email protected] 

Interested in volunteering as a member of the Advocacy Committee? Its as simple as emailing us at [email protected] to learn more. Or you can support us with a monthly gift. Just click here!

RSDSA receives no governmental support. We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.  

Buying Prescription Drugs from Canada is Now Legal in Florida

Written by James Doulgeris, Chairman, RSDSA Advocacy Committee

It is now legal to purchase prescription medications from Canada, which are as much as forty percent less expensive than those available in the U.S., in Florida directly from your local drug store and online. They are FDA approved and safe to use, however, it will take time for the system to absorb this monumental change in distribution and regulatory approval systems.

The approval of Canadian drugs in Florida is expected to reduce prescription drug costs for residents while maintaining safety standards through FDA oversight. This could potentially serve as a model for other states seeking to address the high cost of prescription medications.

Here is how this new approval will affect Florida residents and how the system will change over time:

Cost Impact

Lower Prescription Drug Costs: The approval allows Florida to import inexpensive prescription drugs from Canada, where medication prices are typically lower than in the United States. This is expected to result in cost savings for consumers in Florida, but not for everyone and not directly.

  • Commercial Insurance – Any savings to be passed on to consumers as PBM’s (Pharmacy Benefits Managers) assess price advantages of Canadian versus U.S. sourced drugs, and these are done on a national basis. In any event, cost savings will be indirect in the form of lower co-pays or insurance premiums. This law pertains only to Florida and it will take time to sort things out. 
  • Cash Customers – It is uncertain how consumers will be able to price shop between country of origin. It will be largely up to consumers to price shop between retailers, who may or may not advertise cost savings, but likely will to bring traffic to their stores. It is unlikely price wars will erupt, though.
  • Medicare and Medicaid – These are national programs that can now negotiate with drug manufacturers, and these will be largely unaffected for now. However, there may be isolated cases where the cash price may be lower than co-pays in the “donut hole” in Medicare Part D, which pays for prescription medications. Careful shoppers should keep an eye out for organizations like AARP and Consumer Reports, which will likely track and report these savings opportunities.

Increased Competition: The availability of Canadian drugs can introduce more competition into the pharmaceutical market, potentially leading to reduced prices for a wider range of medications in Florida and potentially other states, but only for cash customers meaning those without healthcare pharmacy insurance benefits.

Safety Impact

  • FDA Approval: The U.S. Food and Drug Administration (FDA) approval ensures that the imported Canadian drugs meet certain safety and quality standards. Therefore, consumers can have confidence that these medications have undergone regulatory scrutiny for safety.
  • Prescription Authentication: The FDA’s involvement includes verifying the authenticity and legitimacy of the imported drugs to prevent counterfeit or unsafe medications from entering the market. This, however, will get complicated with pop-up retailers and online sellers.

Online Purchases

While the approval of Canadian drug imports in Florida allows for the importation of medications from Canada, Floridians cannot purchase Canadian drugs online without restrictions. The implementation of the program and the specifics of how these drugs can be obtained, while regulations and processes are in place, will be a moving target with unscrupulous sellers.

To purchase Canadian drugs in Florida, Florida residents should follow these steps:

  • Consult a Healthcare Provider: Before seeking to purchase medications from Canada, you must consult a healthcare provider. They can assess your medical needs, discuss treatment options, and provide prescriptions if necessary. A prescription is required to purchase prescription medications.
  • Verify Legitimate Online Pharmacies: Research and choose a legitimate online pharmacy based in Canada. Verify the pharmacy’s credentials, including its licensing and reputation by seeking a third-party validation using Google or a similar search engine.
  • Prescription Requirement: ALL legitimate online pharmacies require a valid prescription from a licensed healthcare provider to dispense medications. 
  • Beware of Scams: Exercise caution when dealing with online pharmacies. There are fraudulent websites selling counterfeit or unsafe medications. Stick to reputable sources and avoid suspicious offers. If it seems to be too good to be true, it is.

While the FDA approval allows for the importation of Canadian drugs into Florida, the process of purchasing them online should be must cautiously, following the proper legal and medical procedures. Always prioritize safety and verify the legitimacy of online pharmacies to ensure the quality and safety of the medications you purchase.

Contact us at [email protected] 

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support (it is time to change that!). We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.  https://rsds.org/donate/

For more information or with questions, contact Jim directly at [email protected]

Centers For Disease Control And Prevention CDC Guidelines For Long Term Opiate Use

Prepared for RSDSA by James Doulgeris – for more information or with questions, contact him directly at [email protected]

The restrictive guidelines for opiate prescribing of the past have been relaxed substantially, leaving decision making to physicians and their patients. Here are the details:

The new guidelines for prescribing opioids, as outlined by the Centers for Disease Control and Prevention (CDC), have evolved to address the opioid crisis while ensuring appropriate pain management. These guidelines were updated in 2022 and focus on several key areas:

  • Determining the Need for Opioids: Healthcare providers should carefully evaluate the necessity of opioids for pain management. Non-opioid alternatives should be considered first, especially for conditions like chronic pain [2].
  • Patient Assessment: Before prescribing opioids, healthcare professionals should assess the patient’s medical history, risk factors for addiction, and pain intensity. They should discuss the risks and benefits with the patient and establish treatment goals [1].
  • Prescribing Opioids Responsibly: When opioids are deemed necessary, providers should start with the lowest effective dose for the shortest duration, particularly for acute pain. For chronic pain, they should use a gradual titration approach and regularly reassess the patient’s progress.
  • Monitoring and Follow-Up: Ongoing monitoring is essential, with regular follow-ups to evaluate the patient’s response to opioids, their adherence, and any signs of misuse or addiction. Adjustments to the treatment plan should be made as needed [1].
  • Education and Informed Consent: Healthcare providers should educate patients about the potential risks and benefits of opioid therapy and obtain informed consent. They should discuss the safe use, storage, and disposal of opioids [1].
  • Flexibility: The guidelines emphasize flexibility, recognizing that each patient’s situation is unique. The approach to opioid prescribing should be tailored to individual needs and circumstances [4].

It’s important to note that these guidelines aim to strike a balance between providing pain relief for those who need it while mitigating the risks of opioid misuse and addiction, contributing to efforts to combat the opioid epidemic.

Sources:

Overall, while CDC guidelines are more liberal, many state guidelines have failed to be updated to reflect more modern medical viewpoints. Some states such as Colorado are so restrictive that they have only begun to update their ban on opiates when confronted with hard evidence of a direct link to the ban and suicide rates.

Please consider supporting RSDSA with a monthly gift 

RSDSA receives no governmental support. We are totally reliant on donations from the CRPS community and from our fundraising events. Thank you for your kind consideration.

RSDSA’s Plan to Bring Ketamine on Label

Written by James Doulgeris

There is real science and overwhelming evidence to support that ketamine is THE drug to treat CRPS and its two primary comorbidities – PTSD and treatment resistant depression. Presently, ketamine is not covered by any insurance because it is “off-label,” because it has not performed a Clinical Study Proving that it is safe to use over time.


Ketamine use in treating CRPS for over two decades with tens of thousands of patients provides a strong track record of safety and effectiveness. So, why hasn’t the FDA approved it for CRPS/RSD? I have spoken with several FDA officials, and they give two primary reasons:

1. There is no standard of care meaning physicians using ketamine on patients with chronic pain, depression and PTSD have not agreed on a specific treatment protocol including dosages. The lack of self-regulation is problematic for them; and,

2. The FDA requires a study showing that long-term use of ketamine is safe under a standard therapeutic protocol and dosage range. This means that a years-long double-blind study called a PMA, or Pre-Market Assessment, is required to prove that it is safe and effective to use.

Up until now, the money has not existed to perform the FDA study because CRPS is an orphan disease. This means that RSDSA and others are in a poor position to raise the millions of dollars required to mount such a long-term study. Furthermore, the study will take years and an investment into the seven figures to perform. These studies are normally done by a drug company, however, since ketamine has been on the market for over 60 years, is generic and relatively cheap, and it is already being used off-label, there is no incentive for drug companies to do so.

Without FDA approval, insurers do not cover ketamine therapy or infusions meaning, in many cases, profiteering is rampant. Some clinics charge as much as $1,500 USD or more per day for ketamine infusions while others accept insurance fees for infusion services because ketamine is relatively inexpensive. The rest are in-between. Our community is being hurt financially, physically, and emotionally. The cost to a facility for ketamine per day for an infusion is about $40.

Doing the math, anything over $250 to $300 or equivalent per day for a four-hour ketamine infusion is predatory pricing.

Sublingual ketamine tablets, nasal sprays, capsules and creams, standard daily therapy that can significantly reduce the amount of opiates required to achieve equivalent pain relief, can cost over $20 USD per day, or over $7,000 per year making one of the most effective, and opiate sparing, drugs unaffordable for most CRPS patients.

Ketamine nasal sprays, sublingual tablets, extended-release capsules, and topical creams are only available through compounding pharmacies. Quality varies widely as does potency even month to month from the same pharmacy. A recent report on compounding pharmacies was not encouraging, and that is being generous.

The calvary, literally, is coming to the rescue. The Veteran’s Administration, which is performing a study on the long-term effects of ketamine infusions and other means of ketamine administration, has taken the lead. It is within their regulatory powers, and that provides a mutual opportunity for RSDSA to provide a much broader participant cohort to the study, speeding it up by several orders of magnitude. That process is already underway.

Our plan is to apply for an investigational waiver from CMS (Centers for Medicare and Medicaid), which regulates and pays for the Medicare and Medicaid programs covering a suspected majority of our CRPS patients. This waiver would allow Medicare and Medicaid to pay for ketamine as a benefit if used in conjunction with the VA study.

We will keep you advised on the progress of this program, which I have been asked to take the lead on.

We will also be working on developing relationships with existing ketamine infusion centers and reputable compounding pharmacies willing to abide by the VA protocols and will provide that list and instructions as to how to apply to participate in the study.

In the meantime, ketamine infusions are an OUTPATIENT procedure. Again, they should not cost more than $250 to $300 per day and most insurers cover the cost of infusions. Now that you are armed with the facts, get out there and take care of yourself in the short term if you and your physician agree that ketamine infusions are right for you. We are working hard on the rest.

RSDSA is a resource. If you still have a question, you are welcome to ask me by emailing me at [email protected].

Join Abbott On Neurostimulation for Foot Pain Webinars Through March 2024

Abbott is holding a free national patient education event webinar series through March 26, 2024 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.

Complex Regional Pain Syndrome: Practical Diagnostic and Treatment Guidelines, 5th Edition 

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.

View the full article here.

Pain Reduction by Inducing Sensory – Motor Adaptation: CRPS PRISMA Trial

Pain Reduction by Inducing Sensory-Motor Adaptation: CRPS PRISMA trialIn 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]).

DRG Stimulation: The Breakthrough CRPS Treatment Has Finally Arrived in the United States

Corey W. Hunter, MD who wrote about DRG stimulation for CRPS 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.

DRG Stimulation explained through an image. How could DRG stimulation impact CRPS RSD Pain.
Courtesy of St. Jude Medical

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.

Axium device for DRG stimulation. How can this change the future of CRPS RSD.
Courtesy of St. Jude Medical

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.

Putting Out the Fire: A Brand New Approach to Treating RSD/CRPS

Dr. Katinka van der Merwe blogs about new approaches to treating CRPS RSD 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.