Category: Guest Blogger for RSDSA

Written by Katinka van der Merwe

Dr. Katinka is back to write about the anatomy of hope. What does she mean by this? How can a chiropractor impact lives of people living with CRPS/RSD? After finding her purpose, Dr. Katinka did just that. From neuromuscular reeducation to microcurrents, read all about it here.

Six years ago, I was a chiropractor bored to death in practice. The public viewed me much the same as they view all chiropractors. I probably “cracked” backs and necks. That is what chiropractors do, right? I reached out for help in any way I could think. I attended seminars, I visited successful and happy chiropractors, I read motivational things. Everywhere I looked I was told to “find my purpose”, but that was easier said than done. I was struggling to find my purpose. Does one simply declare one’s desire to find such and it magically comes?

Today, six years later, and finally having found my purpose, I still cannot not provide a clear answer to this question if my life depended on it. I guess the answer lies somewhere in between. I remained open. I remained thirsty. I always looked. Fate maybe played a hand. I never take it for granted, this purpose. As a trained chiropractor and the daughter of a chiropractor, I was raised with the strong philosophy that the body can heal from within in most circumstances, given the right support. I was raised with the knowledge that the nervous system is magically intelligent and the agent of this healing process. I knew there was a whole community that believed that when serious health problems present themselves, you better make your way to a “real” doctor and get yourself some proper care.

However, I always believed. I believed that this philosophy made sense for everybody, even the worst of the worst– even for those who suffer from CRPS. I only had to find the right tools. My life changed one day when a full body CRPS patient named Carlos came to me for help. He was burning from within, he was sustaining on liquids, curling up in pain after eating anything. His wife told me he no longer wanted to live. He told me that he did not believe I could help him. I was scared, feeling the pressure of a life in balance upon my shoulders. I treated him with the only tool I had at that time that I believed would help. I treated his Vagus nerve. It worked. That day, not only Carlos was saved, but I was too. I had found my purpose.

I will explain my system in this blog. I have before, but my work is constantly evolving and changing, as any doctor worth his or her salt work should be. A good doctor believes in your ability to heal, a good doctor believes in YOU. A good doctor is always open to new knowledge. Since the last time I wrote for this blog, I have stopped using at least one therapy, and added a few new things. I have added purpose- driven talented people to my team. The message that I want to give all people in daily chronic pain is not to simply hope for a cure, but to find hope again. This process starts by gaining trust in your body’s ability to heal from within. Your body is infinitely smart. Every second, regardless of how sick you are, your body is performing roughly 38 thousand trillion functions. It does all this without your input, without your doctor’s help. It is true that your body may become stuck. Sometimes it may need some help to get back on track. In our world, we call this nerve interference.

Before I explain my system, it is important to remember that not every treatment works for every patient. It is also important to know that as a chiropractor, I am not allowed to make claims of treating any specific condition. What I do is to remove nerve interference. My system was put together laboriously over the last six years, piece by piece. If we do not see predictably high success rates, we change it, and we fine-tune it.

Six years ago, I set out on an ongoing journey to treat the central nervous system of those patients who often suffer from some of the most painful and hopeless conditions from all over the world. In order to treat these patients effectively, I needed revolutionary tools in my figurative tool bag. I always say that some of my best virtues are an open mind and a never ending thirst for new knowledge. I am obsessed with helping more people more effectively.

Whenever I hear of an amazing technique, system, supplement or technology that helps the very worst patients, I set out to investigate it and when appropriate, I bring it home to our clinic. My number one criteria is that whatever is used must either remove nerve interference and/or help the body to function better from the inside out, the way it was designed to do. It should NOT merely cover nor suppress pain. It is my belief that no long term good can come from either. Pain is merely your body’s way of crying out for help.

By following this formula, I have put together a powerful system consisting of several “punches”, as described below. After all, nearly every patient entering our system is involved in the fight of their life. They are fighting not only to regain their health, but they are also fighting to return fully to life.

It is our philosophy that the location of your symptoms (most often pain) does not necessarily directly correlate to the cause of your symptoms. One dysfunctioning part of your body may adversely affect a completely different part. Medically, the body part or area that is symptomatic will be examined in detail through methods such as X-ray and MRIs, but the whole body is often ignored.

Every part of the body affects every other part, and each of our punches has a holistic approach.

OUR “SEVEN PUNCH” SYSTEM

WAKING UP THE VAGUS NERVE

The Vagus nerve is one of the twelve cranial nerves exiting the brain, bypassing the brain and supplying the body. This nerve is part of your autonomic (or automatic) nervous system and is crucial to your health, as it serves many valuable functions, such as digestion and helping you to swallow. In recent years, lots of research has been done about this nerve and its effect on the central nervous system, inflammation, and the immune system. It is now believed that this nerve acts more like a secondary spinal cord than an individual nerve.  This nerve is parasympathetic in nature, and communicates with most of the organs in both the chest and abdominal cavities. When people suffer from chronic pain, they often suffer from malfunction of this nerve, also commonly referred to as “low tone” of the nerve.

I have studied and combined several techniques from all over the world, all focused on increasing the function of this nerve. Since this nerve is located near the top vertebra in the spine (the atlas), gentle and specific pressure to the upper cervical spine will often help this nerve to start functioning the way it was designed to do again. If your problem will respond to Vagus nerve stimulation, your Neurologic pain will often decrease early on in treatment, even if for short periods of time after treatment in the first phase of our system.

NEUROMUSCULAR REEDUCATION

Neuromuscular reeducation is the latest addition or “punch” to our system, and we are really excited to offer it. It is a new frontier in rehabilitation and it affects both the nervous system as well as the muscles, tendons and ligaments. This system is a form of electrotherapy and uses specialized equipment that the patient is hooked up to while performing a specific set of therapeutic exercises under the watchful eye of one of our experienced neuromuscular reeducation therapists. Before the therapy begins in earnest, your therapist will perform what we refer to as several “search and destroy” sessions.

During these sessions, the therapist will use electric pads to search for “hot spots”, or areas where sodium, potassium and calcium are leaking from the nerve cells. Often, these “hot spots” may not be in the area where most of your symptoms are. Remember, every part of your body is connected with every other part.

Neuromuscular reeducation helps the body to correctly absorb stress and also will quickly accelerate muscle rehabilitation and strength. Our patients often report that they are seeing gains with this therapy not seen before even after years of physical therapy. The reason for this is that while hooked up to this machine your muscles will gain strength at a very accelerated pace, as one rep is roughly equal to about 250 reps performed during regular PT or exercise.

Therefore, it is common to see tremendous breakthroughs in a handful of sessions on a body part that has gone through repeated physical therapy for many years.

Neuromuscular reeducation is hard work and can be intense, but our patients truly love this specific punch. It is very rewarding, after years of not being able to use a specific body part (or parts), to see function and strength return to that body part(s). Strength equips freedom.

This system has been FDA approved specifically for:

1. Relaxation of muscle spasms;
2. Prevention or retardation of disuse atrophy;
3. Increasing local blood circulation;
4. Muscle re-education;
5. Immediate post-surgical stimulation of calf muscles to prevent venous thrombosis;
6. Maintaining or increasing range of motion.

FREQUENCY SPECIFIC MICROCURRENT

Frequency Specific Microcurrent is another treatment using electrotherapy and an exciting new way of treating nerve and muscle pain and many other conditions using specific frequencies and microamperage current. Most people suffering from chronic pain also suffer from nerve inflammation and general inflammation.  Frequency Specific Microcurrent decrease has been shown to powerfully decrease inflammatory cytokines and nerve pain to reduce inflammation. Cytokines are tiny proteins acting like messengers, telling the nerves to be inflamed, which in turn causes even more cytokines to be released by the body. This phenomenon is referred to as a “cytokine storm” and in a nutshell, causes a lot of pain and means big trouble for the person whose body it’s taking place in.

Frequency Specific Microcurrent has been shown to reduce inflammation in a blinded animal study more effectively than any drug ever tested in this animal model. The frequency specific effect is remarkable and reproducible.

It is important to note that there are FDA restrictions on what we can say, report or claim as an effect of the use of microcurrent as a device for the treatment of any condition other than a general “treatment of pain” statement.

Microcurrent instruments are all approved under the general class of transcutaneous electrical nerve stimulators (“TENS”) devices even though microcurrent is 1000 times less current than TENS and therefore has distinct differences that set it apart from TENS.

TENS devices can only make claims about general relief of pain. This doesn’t change what we can do, it changes what we can say about what we can do. All references to clinical effects other than simple pain control refer to frequency resonance effects not the effects of microcurrent.

FSM has changed what is possible in pain management. FSM can treat chronic myofascial pain quickly, easily, and comfortably. Nerve pain from nerve traction injuries, disc bulges, herniations, herpes and shingles can be treated successfully by FSM Practitioners.

There are protocols for kidney stone pain, disc and facet joint generated pain that give rapid and often lasting relief. The protocol for fibromyalgia associated with neck trauma offers pain relief, unprecedented changes in inflammatory cytokines and hope for the 2 million patients who suffer from this condition. People who suffer from conditions such as Complex Regional Pain Syndrome (CRPS) are also affected by circulation of high levels of inflammatory cytokines, as mentioned above.

There are never any promises with medical procedures, but Frequency Specific Microcurrent offers hope.

NERVOUS SYSTEM REHABILITATION

Once the patient’s nervous system is strong enough and their pain reduced sufficiently, we use gentle techniques to show the brain that it is responding abnormally to sensory stimuli. We also will make sure that all parts of the nervous system are freely communicating with all body parts. Think of your brain as the captain of a very large modern ship. When the ship hits a rock or an iceberg, that compartment in the hull will be automatically sealed off so that when it fills with water, the damage will not bring the entire ship down. Failure to do so will cause a catastrophe (we all know what happened to the Titanic). Much like a ship, the brain treats a chronic injury that will not heal as an energy leak adversely affecting the whole body. After a while, it will start ignoring it. This is not conducive to healing, although it is a natural protective mechanism. After the patient’s nervous system starts to heal, we gently remind the brain that that specific body part(s) need(s) help. We have found that this type of nervous system rehabilitation greatly increases the stress that the nervous system is able to handle. It is important that the patient’s body can appropriately respond to stress, as we are exposed to stress every second of the day. Stress is defined as any change. Changes in temperature, touch, humidity, etc.– all forms of stress. If your nervous system cannot adequately respond to stress, life becomes extremely difficult and painful to navigate. It is our job to help your nervous system to handle change.

DETOXIFICATION

Our patients often come to us after years of taking heavy duty medications. In our experience, Ketamine especially may interfere with your body’s ability to heal. We use gentle Detoxification techniques to assist the liver in recovering. We may also recommend heavy metal Detoxification.

FUNCTIONAL BLOOD PANEL ANALYSIS

We are finding that very often, patients who suffer from nervous system dysfunction also suffer from chronic viral and/or bacterial infections. Often, the condition started after an infection. The tell-tale “fingerprints” of these infections can be found in basic lab work, performed in our own in- office laboratory. Your results will be analyzed with an eagle eye and if we suspect chronic infections, further investigation will be done. We offer various protocols depending on the infection(s) you suffer from.

SUPPLEMENTATION BASED ON YOUR UNIQUE DNA

You may suffer from genetic variations that must be addressed through targeted supplementation. All of our supplementation recommendations will be based on your own unique DNA.

That is our system. Our creed is that every patient matters to us. Every outcome matters to us. In our office, we always remember the patient’s “why”. Why do they want to get better? It is infinitely bigger than not being in pain. It is about living, loving, and giving. Every goal is different. Maybe that patient wants to run again. Maybe they want to hold their grandchild, maybe they want to keep working. Life is infinitely precious and restoring hope is an enviable job that I never take for granted. It is hard work, but well worth it. Hope is possible, it is real. We are there to watch it return in our patient’s eyes and hearts. We are there for those moments when patients first walk again, run again, laugh again.

Hope can be a scary thing. It makes you vulnerable, because having hope also means opening the door to possible disappointment. I understand the fear that goes along with having hope. However, there isn’t one single CRPS patient on the face of our planet who would choose to stay in pain because having hope is too scary. You must hold on to the fact that your body was magnificently designed by an intelligence that humans scarcely can understand. This intelligence may simply need to be unblocked, in order to heal your body from within. Make the leap. Hold on fiercely to hope. Hope is precious, and it will keep you alive, as opposed to merely just existing. Never, ever give up on it.

By Guest Blogger Amy Marie Suss

There are moments in which we realize our lives are changing, forever. Amy Marie Suss realized hers was changing a decade ago. Little did she know, this day would lead to RSD/CRPS and to becoming a warrior against pain.

April 30, 2007.  That was the day my entire world changed.  I was driving home from work when a 17-year-old kid blew a stop sign, going well over the speed limit, while trying to make a ninety degree turn less than fifty feet in front of me.

There was nothing I could do and I hit him — head on.

I remember bits and pieces from the rest of that day.  The sound of my car crunching into his and of the grass and dirt being ripped up, hitting the underside of my car.  The look of straight fear on the face of the woman who came out from a nearby building and realized that she knew me.  The tone of voice the officer had as he told me that I wouldn’t need my shoes again… most likely ever.  The sound of the helicopter landing on the hospital roof and the way the ceiling lights looked as I was quickly pushed down the hallway on a gurney.

These memories never leave me.  I carry them around day to day, and do my best to live with them rather than be controlled by them.  Most days, I do alright, but some days are hard… and others are downright miserable.

The nerves in my foot were damaged in the accident, and while I was able to walk again, my foot will never be the same as it was before.  In the beginning, there were so many doctors, so many office visits and tests, so many “experiments” and home remedies — but nothing helped.  The pain in my foot was constant and intense, but I couldn’t get any of the doctors I saw to understand.  After many, many doctors in many, many fields, repeatedly said that it was “all in my head,” things began to crumble around me.

I truly believe that the most damaging statement anyone can make to someone who is battling an unseen pain or illness, is one that implies that she is faking the pain she feels.

I was in the darkest of places — the fear of what lay ahead, the fact that I didn’t have any answers for what was wrong, knowing that others thought it was being “made up” in my mind, and the worry about how I was going to live in this much pain for the rest of my life without anyone believing me.  It was all too much.  And to make matters worse, the first anniversary of the accident was quickly approaching.

As I sunk deeper and deeper into depression, fear, and grief over the loss of my “old” life, my friends and family became determined to not let that happen.  Now, before I go any further, I need to say this: my friends and family are like no others.  We all tend to have a ridiculous sense of humor (some may call it odd or dark), but together, we call it hilarious.  Without them, I wouldn’t be where I am today — I can say that with 100% certainty.  Their ability to use humor and to love me as is was, and continues to be, what helps me through the roughest of days.

Out of that ability came a celebration to mark the anniversary of the car accident.  We lovingly refer to this day as YIDD, or “Yay, I Didn’t Die!” day.  YIDD is a very simple concept — take one day and celebrate the fact that I survived by doing something we might not otherwise have taken the time to do.  And that is exactly what we have done.  Year 1, a small group of us went out to dinner, trying a new cuisine. Every year since then, it has grown… we have participated in midnight bowling, trampoline dodgeball, bubble soccer, archery lessons, helicopter rides, laser tag, aerial arts lessons — the list goes on and on.

Every year, YIDD reminds me that no matter how bad the pain may get, I don’t have to do it all on my own.  It reminds me that I have people in my corner.  And because I survived when I shouldn’t have, I’m also reminded that I am a pretty tough lady. Most of all, it’s a day to remember that though my life has taken a different path than I’d planned ten years ago, sometimes “different” can be just as amazing (or even better) than you ever dreamed.

A little over two years after my accident, I finally found a team of doctors who gave my pain a name: RSD/CRPS.  That name meant there were options to help me deal with the pain.  Things finally seemed to be going in the right direction, which, in my life has always seemed to foreshadow an upcoming plot twist.

And, a plot twist there was — I was allergic to all pharmaceutical options used to help manage and/or treat RSD/CRPS.  You read that correctly.  All.  Long story short, I am allergic to one ingredient that most medications use and because of this, I had run out of options for treatment. I seemed to be sliding down that slippery slope of depression and fear again… until my spinal cord stimulator was put in.

I know there are many conflicting opinions related to the spinal cord stimulator — but my “battery,” as I call it, keeps my pain at a semi-manageable level, providing me with the option to live life the way I want.  Don’t get me wrong, it’s not a magic wand.  I still can’t wear socks, boots, sneakers, or heels… I can’t get foot rubs or pedicures… My balance is crazy and some days, a light breeze across my foot is enough to bring me to my knees.  But for me, having my battery means that despite all that RSD/CRPS can take away, I am still here to enjoy all the important things in life.  Things like taking my pups for a walk, laying in the hammock with my husband, standing in front of my classroom, hearing my nieces giggle, or simply just walking under my own power.  And, to me, being here for those moments make every second of the pain a little easier.

This April will be my 11th anniversary.  I have no idea what we will be doing to celebrate YIDD or what my future with RSD/CRPS may hold, but there are a few things I know, without doubt, after all these years:  I know that no matter what happens, I have people standing next to me to help me through;  I know that sometimes, you have to take things in small chunks — minute by minute some days, hour by hour others; I know that sometimes, my RSD/CRPS will “win” and I may have to skip an event, or change the way I do things, but that doesn’t make me weak or “damaged goods.”  If anything, my RSD/CRPS makes me stronger — because I am a warrior.

By Shara Wilkey, Capt. USMC Ret.

I graduated from Fountain Valley High School after marching I President Ronald Regan’s Inaugural Parade plating the Tuba. I auditioned for the US Marine Corps Band about two-months after returning from Washington DC. Within a month of graduating high school I was at Parris Island, South Carolina at boot camp!

After boot camp, I went to the School of Music at Little Creek Amphibious Base, Norfolk, VA for 6-months. Then I was stationed at 29-Palms, Ca Drum & Bugle Corps. During this time, I was able to play at a taping for a USO Anniversary in Hollywood, having dinner with Scattman before he passed away then the Drum & Bugle Corps Unit drove down to San Diego, CA where I was first Women Marine to sleep on a US Navy Ship USS McKee for a change of command the next day on the ship. I have played for the Queen of England and again President Regan as a US Marine the second time!

After a regular hearing test, and major hearing loss was detected, I was forced to find a “quieter job.” During this time, I read messages about applying for college and becoming an officer.  I applied for these programs and was accepted for Broadened Opportunity for Officer Selection and Training (BOOST.) I was then selected for the Marine Corps Enlisted Commissioning Education Program (MECEP,) where I attended San Diego State University and was a “Blank Holder” with Graduating NROTC and MECEP Class.

While attending The Basic School, a six-month course where all newly commissioned and appointed US Marine Corps officers are taught the basics of being an “Officer of Marines.” During the last part of this course, in the Motor-T Operations filed exercise while jumping out of the Deuce and a half truck with a S.A.W. and a radio on my back I hyper-extended my left-knee at least 9-times the within the first two days. I went to the field corpsman for help but he was more worried about my blistered hammer toes than the knee.  By the end of the week, five days in the field, I had hyper-extended my knee at least 27-times or more. This was in March 1988. I already had TMJ and some carpel tunnel syndrome from playing the tuba and string bass/electric guitar. I went to the “sick call” on the following work day, and was told I had “runners knee.”

When I graduated from The Basic School, I was sent to Communications School also at Quantico, Va. I was then sent to Okinawa, Japan Marine Wing Communications Squadron-18. I continued to have problems with my knee so I bicycled rather than run most of the time or did pool work outs. I was later deployed several times to South Korea and once I was deployed to Western Australia for several weeks. After21-months I was finally able to see one a US Navy Orthopedic Doctors, who looked at my knee and basically said Patellofemoral pain syndrome, and stated “You’re going to the Land of the Ortho Doctors!” I am not going to help you. So more medical doctors time and delays for a proper diagnosis.

Three-months later I was stationed at Parris Island, South Carolina and Gulf War’s Desert Shield started. Now all the good doctors were sent to the combat zone and the not so good doctors were left in the rear. I had a civilian doctor who worked on base and put me in a leg brace from high hip area to my ankle, in short order my leg atrophied almost 3-inches!

I wore this brace for approximately 6-months. During this time, I learned what a Kinesiologist is and a few of them tried helping me. I got better at swimming up to 2 miles even with three T-shirts, and then working out in the gym with weight machines mainly then with my upper body and arms.

Finally, late in February 1991, I was sent to the Charleston VAMC Charleston, SC to have a 3-Phase Bone Scan. It turns out that VA at that time had never had a “hot” evaluation! When the report was read it seemed the overhead speakers went crazy calling me back to Radiology for more exams procedures! Then the civilian orthopedic doctor working on base was informed that I could be sent to another military base hospital for higher level care to Portsmouth Naval Hospital (PNH), Norfolk, Va.  It was at Portsmouth Naval Hospital I had various testing, and meeting my first psychiatrics. Then the orthopedic doctors did more exams to ensure nothing else was going on with my knee that the MRI, X-rays and others could miss due to the knee being a very large joint in the body. Afer an arthroscopic exam of the knee in question, I was informed there was no mechanical problems but I had RSD (Reflex Sympathetic Dystrophy,) as this was pre-1994 IASP changing it to CRPS.

Eventually, after almost a year at Portsmouth NH, I was able to return to full-duty back and back to Parris Island, SC. I eventually had to have a few more blocks and one of the doctors put me on Prozac, long before any “Prozac Law Suits.” I complained almost from the start about this medication causing me various problems. I was told by many in the “Medical Field.” “This is a new drug. It is safe. You can’t be having those problems.” Due to Prozac and CRPS/RSD, I was eventually medically retired from the military. About 5-years later were the first class-action lawsuits against the Prozac manufacture. Being in the military the Soldier Sailor Act I could not join this.  In 2007, through Medic Alert, I did a DNA Pharmacology test which showed me and anyone I would show this test to, I was allergic not just Prozac but all SSRI drugs and all SNRI drugs as well.

I was officiating Baseball, Softball, and Soccer, I kept doing these sports from youth, High School, and adults out I town to the military base Intramural Games. When my husband returned from overseas duty and was transferred to Camp Pendleton I continued with my Sports Officiating adding later Football, Water Polo, Volleyball, and Track and Field. I was able to do medical transcription part-time for several years as well. I later became Comptia A+ Certified on repairing computers laptops and desk top as well.

I was feeling well with my CRPS seemingly under control with the current medications and physical exercise moving, that I decided to thru-hike the Pacific Crest Trail (PCT.) While preparing for the thru-hike and while hiking the trail I learned of trail maintenance of the PCT. While Thru-hiking was being planned I learned of a HS Football Camp for Officials in Reno, NV. I made plans to go off the trail for attending this camp, as well. While hiking in Northern California near the California Oregon Border I got a March Fracture on my left foot, which had been broken two other times in the past 10-years.

After working real hard, as a football official, I was finally earned a Junior College Football schedule. Sadly, I had to turn in the schedule back the assignor, as I fell too many times as the head referee during a Junior Varsity High School football game. Even in the wheelchair, the only sport I could continue was Track & Field. When my left foot broke, it triggered Lymphedema in my lower body lasting a little over 2.5 years and put me in a wheelchair.

I was told by civilian, military, and VA doctors that I probably would not walk again. My husband of 15-years walked out of our marriage. Some of being told I probably would not walk not being proper diagnosed with lymphedema. On my own I did what felt right beside the typical nerve blocks, trigger points, and other. I did more mental relaxation, use of lavender scented candles, deep tissue massage really worked but yes painful too.  As the economy was tanking during this time, and the loan on my house was due to go up I was able to sell and moved an approximately an hour East of Reno, Nv.

While in a wheelchair, I learned about owner-trained service dog and the trained my own. I got her from the shelter near Anaheim, Ca. Even when the lymphedema settled down and left the body my legs and core was very weak. It took time for me to regain my strength to walk or ride a bike.  I had trained my service-dog to help pull me in my wheelchair, so now I had her help me pull me on my bicycle. The nice thing while near Reno, Nv with my service-dog pulling me I met some people who had horses. I liked horses and had ridden when I lived at Camp Pendleton for several years and later in Orange County, Ca as well. When Doctors told me to stop ridding horses, due to the last horse pulling my shoulder out of joint/hyper-extending, I got really ill physically and my CRPS pain, with comorbidity problems got greater as well.  So, this time, I went back to riding horses for others first, as a safety person so not ridding alone, exercising horses, or extra hand for exercising and/ or feeding as well. In time, I eventually bought my own horse, then another, and had the strength to get on all by myself again! I helped and met others who had horses, got square bales loaded up for myself and others as well.  I have ridden the Pony Express Remount in Nevada one year along the original trail used then too!

As I started feeling better than I had in a long time, I started to look back on my health and other things as well. I read about Medic-Alert doing DNA Pharmacology testing, around 2006. After I got the results, I found a way on the internet to get a hold of one of my former US Navy Medical Doctors in San Diego, CA about the results.  I discovered over time she was able to reflect and agreed with what she saw had since learned herself, and started doing DNA Testing on all TBI patients she saw at NMC San Diego from that point on to help them not go through the “hell” I had to. I was able to read about a pain doctor working on the East Coast for the US Army military and emailed him about my results, as well and any questions to verify my facts he could check with my former doctor in San Diego, CA.

Due to many homes already being planned to be built, new roads and bridges designed and even started, I started looking for another place to move but was not rushing. A friend of mine, who I bought my horse from, needed help in moving to their new home in Nebraska., I said sure. It was during this trip, on the return part, I found a place in South Dakota that was for sale. In 1991. When I was first taught how to do self-guided mediation for reducing pain and relaxation, I made up an imaginary place I thought. I had used this “imaginary place” for some 16 plus years. I did not know it was rea, but discovered it really was real! l When I saw it was real, I had to do everything I could to buy it and that is where I live today and plan to for the rest of my life.

I am still building, adding on, and improving my home here in South Dakota. I will say my horses and barn cats lived better than I did my first few years. I have since worked for a horse farm and learned how to train foals, wean them, and even breed mares as well properly. I have boarded horses as well as goats at my place.  In building my home, I made it so that my only heat was from firewood. Part to keep me moving, year around, regardless of temperature so I am always moving. I have found moving to be the best even if it hurt to move and keep moving.

Over time, I finally decided to join Facebook and discovered the Military and Veterans CRPS/RSD page, as well as several other CRPS types of pages. I really enjoyed Nancy Cotterman, RN page talking about ketamine. I had been reading about ketamine since early 2000. Finally,my former US Navy Doctor commented that she had been trained in ketamine and saw it working.

When I started seeing new doctors in Rapid City, SD area, I started having to “fight” that I had CRPS. It turned out that the VA Neurologist locally seems to not believe in CRPS let alone know how to properly diagnoses CRPS.The VA Neurologist said to me, “Oh, you are not in a wheelchair anymore, so you can’t have CRPS.”  Since 2008, when I moved to South Dakota, I have continually had to fight for my CRPS medical care. My first few months, I needed to have a LSB for my right leg as the leg was atrophying by 1.5-inches and getting worse. I was not able to get this LSB, and my right leg gave out and I fell onto a rock directly on to the knee cap. Eventually, leading me to require another knee surgery due to a “chip bone in the knee cap,” which was in the shape of a pie with the point outwards towards the MCL. The chip finally tore my MCL. During this time, I travelled via military insurance to Colorado Springs, Ca to see my first ketamine doctor. For the first time in so, so long, I did not have to get totally poked as he was an active reserve medical officer in the US Army! He knew all the terms and equipment I listed off on how I had my original injuries for my RSD/CRPS.

I had my first ketamine infusion, Sept 2009, not 36-hours after having the “Staples” from my knee removed.  I did not know about having music, but having learned self-guided meditation I kind a sent myself into a dream state each time and it worked for me.

I began asking the VA for this treatment but was told no.  After joining Facebook then discovering the Military and Veterans with RSD/CRPS . I had learned of Doug Strand, Col USAF Ret is why I joined Facebook honestly. I discovered Doug’s CRPS/RSD on the internet and connected with him via LinkedIn originally. I continued pushing my local VA for ketamine infusions. The chief of staff at my VA kept telling my US Senators it was not allowed in the VA I then found information about Jonathan Haag USAF Ret and his coma-induced ketamine infusions at the Audie Murphy San Antonio VAMC in late 2010.  I emailed and called my VA-VISN Headquarters for my area with no results. When some of those VISN-HQ Senior Executives came to my area for various talks etc., I would approach them and ask in person again with no real answer or help for proper medical care.

I finally started emailing and calling to the DeptVA Secretary and every name that was in the DeptVA Washington, D.C.  I proved to those in Wash DC VA Executives that ketamine infusions was based on medicine based evidence for helping those with CRPS. It helped that I had had ketamine-infusion twice before on my own via the Tricare Prime and it worked for me giving me back my life as far as I am concerned!

Finally, in July 2014 I was told I had to go to my VA VISN Headquarters Pain Clinic for evaluation. Minneapolis Pain Clinic agreed I had CRPS/central sensitization and I needed ketamine, but refused to help my VA to get it. This caused more fights and locating a place that would take VA Fee Basis Pay. I would post my “trials and fights” on the Military & Veterans CRPS/RSD Facebook Page for others and to help them as well.

I finally needed a ketamine infusion and was forllowed to get an “out of region treatment” a one-time at Walter Reed National Military Medical Center Bethesda, MD (WRNMMC) the first week of March 2015, for a 4-hour infusion after evaluation. This was also due to as my former ketamine doctor not being sure when he would be able to do ketamine at his new location, in a state, that had never had it before, Nebraska, at least as inpatient.  On the way back home from WRNMMC my Ketamine Doctor’s office called to set a time and date at the end of March 2015 for a 72-hour infusion.

I let other veterans know of this success and how I had accomplished it and helped in “PreFab Letters” basically having the names, titles and emails address of those in Wash DC VA Executives so others could get ketamine if they wanted. Soon a few others and via the VA Choice Program could get ketamine-infusion from care in the community.  Ii have been trying to keep a list up-to-date of VAs doing ketamine-infusions and locations that take VA Fee Basis be it outpatient or inpatient ketamine-infusion since then.

Last year when I had the unfortunate luck of breaking my pelvis and femur head and greatly needed an inpatient ketamine-infusion, my ketamine doctor that I had been seeing unexpectedly left. This, sadly, allowed my local VA Chief of Staff (CoS) to stop any chance of me getting ketamine for my CRPS. My VA PCP wrote an Urgent Ketamine-infusion consult, but unknown to me the local COS cancelled the consult.

This started some determination on my part to email even more in VA Executives in Wash DC every day, holiday’s and weekends with CC: Jim Broatch, Dir RSDSA as well! After 40-days of this then backing down some the VA Under Secretary of Health emailed me back about the best thing on CRPS he had seen was Dr Padreep Chopra’s Denver, Co June 2015 Slideshow Presentation, which I and my boyfriend was able to attend then.  At the end of Oct 2016, I was told to get my LDN prescription renewed. I had to go to another local VA Pain Clinic Team evaluation, but this time after that the Pain Team and myself would be at a Video Conference with the VHA Interim National Director of Pain Management and someone else. This someone else I was told then was the VHA’s “Ketamine Expert.” Even my boyfriend knew, as I did, this person was not a ketamine expert, as the first thing out of his mouth in talks about ketamine was, “Ketamine is a one or two times event in life maximum.” I told him, “He was not a “Ketamine Expert” that knowledge in the VA was at Audie Murphy San Antonio VA, were they performed a coma-induced ketamine infusion, let alone since 2011 have been doing ketamine infusions every month with just a little over 100- veterans getting ketamine infusions for pain since then.

Still I was again lied to as my VA prescription for the past 12-months had run out on LDN was not written. Fortunately, my out in town PCP did write the LDN prescription. The VA did not write the LDN prescription for another 45-days approximately, and was not delivered to me until Dec 29, 2016. By late December 2016, I was still not seeing any dates for ketamine other than more “harassment” from my local VA, especially the CoS. Nearing my wits end and in the worst flare-up of my Systemic CRPS that I could recall in 29-years of this unhappy relationship with CRPS, I was still sending emails for help to VA Executives in Wash DC. I got another response back on Dec 31, 2016 from the VA Under Secretary of Health Dr Shulkin, who stated he was going to help me get the needed care I needed.

I had already been setting up psych-clearance appointments locally out in town, for getting ketamine infusions through my non-VA Counselor to see a psychiatrist as Dr Ashraf Hanna and other ketamine providers require this prior to making any appointments with them.  I informed Dr Shulkin that I knew of locations where Care in the Community was being provided by and paid for by the VA for myself and other veterans.  Further, I stated my local VA, had been “bad mouthing me” on various diagnoses, which I could prove to be false, let alone I had been taking intra-nasal ketamine, daily since mid-November 2011, and ketamine troches daily since late-September 2016, via my PCP out in town provider.  I also informed him of the other ways ketamine can be taken as the VA in San Antonio has been providing one veteran liquid ketamine daily for several years. I informed him of how some in the Mental Health fields were doing it via IM beside traditional IV with talk therapy at the same time for some patients around the US. Further, that others were taking ketamine by compounded pill form as well.

Dr Shulkin, even after his appointment as the New DeptVA Secertary, had his staff called my local VA CoS and inform them I was to get ketamine at the location of my choosing, and I selected Dr Ashraf Hanna. Sadly, on part Dr Shulkin and/ or his staff had to call my local VA FOUR times, as one of my appointments, which I had proof was cancelled! I got a call from my local CoS this was not done and I stated wrong it was. The last few days of February 2017, I was able to see Dr Hanna in Clearwater, FL, and start my 10-day loading dose.

Upon returning home and back to my local VA, staff strangely happy with me and the best I had seen in a long time. Then someone asked me what had happened to the local CoS as their desk and office was cleared out empty! I went to the one US Senator who had been trying to help me, and his office informed me the CoS was “under major VA Admin Investigation and doing “Special Projects.” I also was aware that some staff had reported the CoS for being retaliatory and vindictive even to fellow VA Employees.

In the meantime, since January 2015, I have had to have a right total knee replacement, but I would not do it unless I had the proper ketamine surgical protocol followed per Dr Padreep Chopra guidelines written up for RSDSA. As the Minneapolis VA, which does ketamine infusions my VISN HQ, will not see any veteran outside of their VA location for ketamine-infusion I kept asking for Walter Reed NNMC, since I knew they did ketamine infusions and can do surgery for my now much needed hip replacement, via the DoD/VA sharing agreement for care with the proper ketamine protocols for CRPS patients. Within 3-weeks after my VA sent in the consult request for care, I had an appointment and was on my way for improved medical a care for me.

This does take a lot out of my boyfriend as pre-9/11 Veterans our “Caregivers” do not get paid. He is not able to work a full-time job especially since my hip was broken. Going to Florida he had to drive almost 80% or more of the way, on the way home we could share equal driving time finally. Getting my total hip-surgery with a lot of limited mobility especially in the beginning, he has had to be with me at Walter Reed NNMC, but is studying so he can get his cyber hacking certificates and others so he can do some more work from home or a far in the future.

I am hoping that my meeting with the Director of Defense & Veterans Center for Integrative Pain Management (DVCIPM) to possibly facilitate help for all DoD/VA Veterans with CRPS, let alone other central sensitization problems and Chronic Pain Patients can be helpful for all of us which is at the end of Oct 2017. Hoping to better dialog with the providers and researchers for Pain from a long term CRPS patient.

Shara Wilkey

Capt USMC Ret

CRPS/RSD Warrior

Writen by Marcia Nolting for the RSDSA blog.

Treatments for CRPS or RSD vary per person. We would like to note that you should always consult with your medical team about treatment options. For Marcia, DRG was the right answer. See what she was able to do due to DRG.

My name is Marcia and I’ve had RSD for almost ten years and as of writing this, am post Abbott DRG stimulation surgery 4 months.

A decade ago, I tripped over a step and thought someone had cut my left ankle/foot off, it hurt so bad. The pain was instant, continuous and unrelenting. The ER thought I was insane and sent me home with what they termed a “sprain” and to rest it. (translation, get over it crazy woman, we aren’t giving you drugs).

Luckily, I was quickly diagnosed and found an appropriate doctor. Following that came ten doctors and every treatment available in the United States. Spinal injections, nervings, nerve suppressant drugs, pain killers, and a spinal cord simulator designed for back pain (that was all there was at the time).

Each of those things helped a little, and combined was enough to allow me to continue walking, but chronic pain was a daily reality for me and unfortunately everyone around me who had to deal with me, dealing with the pain. There were many times when I would be in bed at night, crying myself to sleep (where no one could see me), talking myself into getting through just one more day. Many days were like that…just get through today…just get through tonight, you can do this, you are stronger than this condition, you will be able to survive.

Some nights I honestly don’t know if I believed that, I just knew that I couldn’t give up. I have a wonderful family, loving husband, and kids I had to stay strong for. My youngest doesn’t know who I am, except after RSD and essentially as a “broken” person. I just kept thinking that I had to hang in there until technology/medicine caught up to my condition and there was another option. I hoped to show my son my other self, my true self, someday.

Then Dr. Gullo and Dr. Heros, along with the team of Abbott neuromodulation representatives, told me about DRG stimulation and suggested I try it. I admit to feeling pretty cynical, like, “yeah, right, ok…been there done that, don’t get my hopes up.” The trial was good, but I had no idea what the machine was really capable of until a couple months later. About 2 months after surgery I realized, “Wow, I can work a normal person’s work day and not be a total  *itch and snarl at everyone!” Then I started to feel something extremely powerful, hope.

Another month went by and I noticed that compared to the other spinal cord simulator I had first, it was simply worlds apart. I have stopped using 3 meds. Also, I’m not using any prescription pain medication at all, except the machine. This is the first time in 10 years that’s been a possibility.

When we went on vacation, I was able to walk through the airport without using a wheelchair for the first time. I was able to do most of the activities with my family which was exciting! I went to a Renaissance Fair with my family and walked all day on that uneven ground which previously would have been a harsh sentence of pain for days!

I’ve been able to do a mostly normal work day without taking anything more extensive than Aleve or Tylenol. I had given up and sold all my horses and show equipment (after a lifetime of being an equestrian) because I figured that was not something I could realistically do anymore, and I needed to face reality.

Well just last Friday, I rode with my friends for a half-day girls ride, and I WAS GOOD TO GO!!!!!

Life-changing are the only words to describe it. I’m hoping to get back to my WHOLE life! It has changed my pain level for the better. An over 90% improvement with DRG, and I’m living proof this is a successful treatment option. I’m happier, healthier, easier to live with and so much more optimistic about the future.

I think I’ll travel the world… I’m done rearranging my life around RSD, I WIN!

If you would like to find a location/options near you, visit Abbott’s website. I hope everyone with this awful condition finds help!

Written by Guest Blogger Suzanne Stewart

Suzanne is an active advocate for all things chronic pain. She is the voice behind social media sites like RASEforCRPS and is an active ambassador for the US Pain Foundation. Suzanne also helps RSDSA with our awareness and fundraising efforts. Read her story below.

My name is Suzanne and I have been disabled since 1999; 1^st from PTSD and stage two chronic kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries, including a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for Sick Sinus Syndrome, along with Dysautonomia/POTS. After seven surgeries and a pacemaker, I was diagnosed with” Complex Regional Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

In 2005, I had an M. I. or heart attack and in 2006. Afterwards, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA or stroke in 2006. In 2013, I had to have pacemaker replacement surgery. When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was very painful afterwards.

The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bupivacaine to try and “head off” systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into Severe, Systemic/Full body CRPS and disseminated. It’s spread everywhere including my eyes and my mouth.

I have a few other chronic pain illnesses, including:  CKDII, Arnold Chiari Malformation I, Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4, L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease), Lymphedema, Scoliosis, Asthma, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal Cord Stimulator nor can I receive an Intrathecal pain pump, because of the Combined Immune Deficiency Disease. It could cause paralysis and/or infection in my Spinal cord. So, I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with chronic Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have a wheelchair, Motorized scooter, walker and/or a cane.  Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.

This is my story in the “Readers Digest” short version. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives into positives. So rather than do nothing, I try to do something. For fun, I make You Tube Videos of favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “tearsoftruth.com.” I am a writer for the National Pain Report, I also run a few support groups for RSD/CRPS & chronic pain.   I’m a chemo-angel, a patient leader for WEGO Health and a mentor with RSDSA, for newly DX CRPS patients.  In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Fdn. Family, Jim Broatch & RSDSA, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this.

Written by Guest Blogger Melissa Lovitz. Melissa initially featured this post on her blog.

The Washington Post recently published an article about CRPS titled “The Strange Pain that can Overcome Kids, Especially High-achieving Teenage Girls.” The article was shared with me by someone who has never experienced a chronic, physical illness and believes that you can actually have unlimited spoons. The premise for sharing this article was simply, “I thought it could be interesting”.

Here’s the thing about living with CRPS: it’s not interesting, it is excruciating. 

This article wasn’t an easy read for a person who lives with this condition or in general. The story was raw and real in its recollection of the girl’s suicidality and deep despair. I know that feeling. I could understand.

I shared this articles with several of my RSD sisters, and for those of us who have experienced programs like the ones described in the article, by the end of reading this piece we were feeling like we were fifteen again and meeting our parents by the PT gym at the end of the day. We too easily remembered our own puffy, red faces that were damp from crying, sweating, and working incredibly hard all day. We could feel our legs as wobbly as Jell-O from pounding the concrete stairs for “just thirty more seconds” over and over again. I was transported back to the days where I convinced myself I could do anything for thirty seconds. Later, this notion was expanded to “I can do anything for the length of one song” – just as long as it’s not Stairway to Heaven! As I was reading this article I could actually feel the roughness of a towel rubbing on my leg. I pictured the shaker machine – a machine meant to desensitize our bodies to vibration – and felt the heaviness of dread in my throat and chest. Honestly, it makes me shudder.

The truth is, this disease is horrific and the treatment isn’t glamorous or complacent. In fact, I remember coming home from the hospital after weeks of treatment protesting and boasting that my physical therapy regimen was more difficult than the gymnastics conditioning I complained about during every workout. I worked so hard for my recovery! I was thrilled to get back into my sport, but the emotional toll and trauma of this condition and the various treatments weighted heavily on me as I progressed through the rest of my life. I became one of those people who would do things “in spite of” my pain and to prove everyone wrong. During my physical recovery, I unlearned healthy limits and pushed my body too hard too often both out of fear of relapsing and losing everything I worked so hard to regain and out of sheer persistence – I had to prove to everyone and to myself that my pain wouldn’t stop me. I will never unlearn “doing too much” and I will always have a hard time differentiating between “good pain” and “bad pain”. Doing too much has been my emotional defense mechanism and my brick wall that has separated and protected me from the world ever since I was able to move freely, yet not pain free, again.

The problem with articles like this is that they present only one story and they’re oversimplified. First of all, the characterization of this illness as something that is common in high achieving girls makes it seem like we did this to ourselves. Or worse our parents’ ambitions for us got us into this mess. The article goes as far as to describe Type A overachievers as “one stone’s throw away from being a pain kid”. This simplification absolutely dismisses the severity and rareness of our lived experiences. For some of us, our bodies cope with stress in maladaptive ways – i.e., pain. For many of us, our capability to hone our Type A strengths is what helped us to overcome this debilitating out condition. We were taught to push through the pain. The mantra “If it hurts to do something, that’s what you should do” is how we learned to regain and reclaim our functionality. Discipline and commitment were the mechanisms by which we executed each day. Consistency is how we maintain our gains and continue to grow stronger. Those Type A characteristics saved my life.

In this intense program, we were taught to ignore the pain and prioritize functioning. It was the epitome of “fake it til you make it”. One person I talked to told me, “It was engraved in your mind as a kid that you have to act like it’s all fine but no one fully understands… that you’re not fine”. As I read this article I felt like my 3D, actual living body was squished into some 1000+ basic words on a page. A huge chapter in my life was minimized to a single story of one person’s “strange pain” that others might find “interesting” – my life and (my) pain became click bait. “Strange” is pathologizing language – one step away from “crazy” – that makes us feel less believed and like we’re making it up. This actual, legitimate pain is sometimes inexplicable and definitely described and experienced differently by each person, but regardless it’s tangible and all too familiar to me.

This isn’t the first time mainstream media has failed to adequately capture the lived experience of someone with RSD. In 2013, Dance Moms featured Nia’s experience with chronic pain. Nia’s mom says, “Nia says she has the pain but when she’s not thinking about stress… she’s fine… I think it’s in her head that something’s wrong with her feet… she has to tell her brain to shut off the pain signals”. This 2:20 segment of TV did not do Nia or our community justice. This mentality practically implies that we are choosing to live in pain. If it was that easy to just shut off our brains and decide that we are not hurting, then by that same logic many of us wouldn’t also have depression or anxiety. It is important to note that the comorbidity of these conditions is exceedingly high. The bottom line is: this is a real illness. We cannot shut it off. This simplification which occurred on a show that likely has a large audience of “high-achieving teenage girls” was a missed opportunity. Put another way, the public perception of this illness doesn’t align with how it manifests for everyone – with all our realities – and that’s harmful to us.

I realized this article and these “media moments” aren’t made for “us”. This Washington Post article wasn’t written for people whose doctors didn’t believe them, who have spent years warping their own experiences in their mind so relentlessly that they have convinced themselves they were faking it or that when they were feeling their worst it wasn’t really “that bad”, who felt like their pain and neediness tore their families apart and ruined their friendships. This article wasn’t written for people who know what it’s like to “lose what you are and what you love” and have to fight like hell to get some semblance of the life you knew back or worse, accept your new reality and deal with the implications or that – “even if – and especially if – it hurts”.  I finally realized this article was never going to be interesting to “us”.  And, it was interesting to “them” the same way a “freak show” is interesting at the circus. It’s othering and othering doesn’t take ever take the form empathy or compassion. It rarely even resembles pity.  It feels like on a smaller scale this article evoked the same thoughtlessness and naivety that “13 Reasons Why” did when it appealed to a privileged, untroubled audience, and “To the Bone” did for people who do not have explicit experience with eating disorders. Representing shock value at the expense or representation is irresponsible.

My painful disease reminds me daily that I don’t have control over my body and I will hurt physically and mentally sometimes just because the wind blows. However, I do have control over the choices I make each day about the life I lead and the way I love myself and my ambitions – fiercely. The article got one thing correct: “It is not as simple as “come for three weeks and now your life is all better.””

After all this ranting, I am left feeling energized by the possibility of a different conversation about “us”. My condition and my experiences living with chronic pain have shaped who I am today. I am hopeful to one day hear sentences like this, “this article was interesting to me because of what you shared about your experience. I want to understand you better. How do you relate to this article?” I will look forward to conversations that are powered by the curiosity to better understand my story and a willingness set aside expectations in order to make space for surprise, ambiguity, and maybe even genuine understanding.