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Category: RSDS General Info

Our Groundbreaking Non-invasive Approach to CRPS

by Dr. Katinka van der Merwe of The Spero Clinic and author of “Putting Out the Fire: New Hope for RSD/CRPS.”

I set out on a journey eight years ago that made treating the nervous systems of those suffering from CRPS (Complex Regional Pain Syndrome) not only a part of my life as a chiropractic physician, but my passion and my mission. My first CRPS patient was a man named Carlos, who suffered from full body CRPS. This case revealed to me how complicated but also rewarding treating patients who suffer from CRPS can be. I have kept in touch with Carlos through the years, and I’m delighted to say that as of today, Carlos is still in remission. In the past eight years, as my patients have shared their results, patients have come to me from all over the USA as well as Australia, Canada, Europe and South America.

The first question patients usually is “is your system like ____“  (fill in the blank). Is your healing system like Calmare? Is your system like Ketamine? Is it like Mirror Therapy? The simple answer to this question is that my system I have designed is not like any other system. Since I treated Carlos, I have developed a simple formula I use in the ongoing development of my treatment. I can sum it up in the following way:

My soul purpose in treating the human body is to remove anything that may interfere in the nervous system’s ability to heal the body from within. Any treatment that has shown marked (and I do mean marked) success in this department is worth a second look. To this end, I have always maintained that one of the most powerful tools any doctor can arm themselves with is an open mind. When we are closed to new ideas, we are closed to growth.

Through the years, I have adopted systems and discarded systems. This has never once meant that anything I used didn’t work, it just meant that it didn’t work consistently. Of course, there is no medical treatment that I am aware of that is universally successful. After all, I am treating the marvelous human body, not a predictable machine. However, if I find a promising treatment, I examine it, test it against our old treatments and if it works better than my old way, I replace it. In this way, the model I used eight years ago is very different from the one I use now.

That brings me to the next question. What exactly do we do? I will attempt to explain as briefly as possible. The treatment approach I have designed is deeply rooted in my basic philosophy as a chiropractor. Chiropractors are known by the public to “pop” backs and necks, because they hurt. However, what the public generally does not understand is that our healing art stems from the belief that the body is a self-healing organism, capable of surviving and healing even catastrophic injuries.

Most accepted treatments for CRPS are rooted in pain control. While the need for these are obvious, they also do not offer long term solutions. When the drug or chemical compound’s effect runs out, the pain returns. Spinal Cord Stimulators is a notable exception to this rule. However, in my experience, Spinal Cord Stimulators, even when successful, merely take the edge off the pain. Neridronic acid is a new treatment currently making its way to the US. We know for certain that it may have severe side effects and does change the structure of the bones permanently. In addition, it does not work for everyone, although it has proven to work miraculously well for some. No long- term studies have been done on this treatment. Of course, the same may be said for our system. The difference, however, is that I require that none of my treatments alter the normal function the human body, but only enhance its function.

Our system consists of what I call “punches”. The first “punch” is using a technique that I have personally developed to decrease pressure on the Vagus nerve. The Vagus nerve is one of the twelve cranial nerves that generally control senses like smell, balance, taste and sight. The Vagus nerve is the 10th cranial nerve and it is vastly important. It controls inflammation of the body (including nerves), GI function and immune function, to name a few. The autonomic nervous system (the automatic nervous system) is divided into two parts: Sympathetic (fight or flight) and Parasympathetic (rest and digest). The Vagus nerve contains parasympathetic fibers. In my experience, virtually 100% of CRPS patients suffer from malfunction of the Vagus nerve to at least some degree, with sympathetic dominance of their autonomic nervous system, rather than a balance between Sympathetic/Parasympathetic.

This, of course, explains why so many patients CRPS patients suffer from symptoms associated with cranial nerve dysfunction, such as sensitivity to light and sound. Also, it explains the very common failure of the digestive tract in CRPS patients, generally a symptom that is regarded as a separate diagnosis in the medical community, requiring a separate treatment.

The other punches to my system is like a tool bag full of different tools. Most patients will require a customized approach, based on their unique circumstances. Please note that in my experience, our system is like a cookie recipe. You cannot pick and choose individual ingredients and expect the same outcome as when all the treatments are used together. Synergy is vastly important, where one punch is exponentially more powerful when part of my system. Following is a brief mention of each tool:

  • Detoxification (based on patient tolerance)
  • A functional blood analysis. Our doctor who specializes in this specifically looks for signs of a viral and/or bacterial infection. For example, patients who suffer from CRPS often will also suffer from a chronic Epstein Barr Viral (EBV) infection, making long- term healing unlikely unless the infection is addressed. Chronic bacterial bladder infections will also impede healing, and are often overlooked. Blood is not drawn unless the patient is considered stabilized, as a needle prick may spread CRPS in unstable cases.
  • Magnetic Resonance Therapy is used to calm the nervous system and decrease pain, in order to “set the table” and prepare the body to accept other therapies.
  • Emotional healing therapies. I have a doctor on our team who specializes in neutralizing the effect of emotional stress on the Central Nervous System. In addition, I host The Lightning Process, a patented training course presented by a certified provider from Oregon right in our clinic about once every two months. In our experience, most CRPS patients suffer from severe PTSD and fear, as they no longer trust their bodies to naturally be healthy. This course provides our patients with powerful tools to influence their lives and their health.
  • Neuromuscular Re-education, FDA approved for relaxation of muscle spasms, prevention of muscle atrophy, muscle re-education and increasing range of motion. The patient is connected to a machine that uses Direct Current (patented in a way to not cause the nervous system to “guard”) while put through specific rehabilitative exercises. This process is overseen by an experienced and dedicated therapist, familiar with your case. You will grow very close to your therapist and the day you graduate, they will be right by your side to watch you ring the bell (more about that later).
  • Sound wave technology is used to break up adhesions and scar tissue, both of which may impede healing to the body as a whole.

I like to refer to our clinic as the “anti-clinic”. What does this mean? Most clinics are quiet environments where patients do not interact much with each other. In our clinic, I encourage and promote bonding among our patients. I have found that when patients can encourage each other in a “buddy like” system, it is a central part to patient’s recovery. I have a tradition where new patients meet outgoing patients to discuss the treatments, what to expect, and provide encouragement made possible because of their own progress. We encourage hugs, laughter, and humor all around.

My staff was handpicked from all walks of life. Some were waiters, some were patients, and some worked with world class athletes. In my experience, the most important quality a staff member can possess is empathy and compassion for those who suffer. Virtually everything else can be taught. While we all wear scrubs, it is not unusual to spot piercings, tattoos and pink hair among our staff. We definitely focus on the things that matter most and don’t waste our time on the little things that don’t.

Does our system work for everybody? As with every treatment, my system is not universally successful. It is my strong position that we do not treat specific conditions, but bring healing to the central nervous system. In addition to CRPS, many of my patient suffer from other conditions like Ehlers Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). The body knows how to heal from the inside out, sometimes it just needs a tour guide. If you look at my clinic’s Facebook page, you will see many videos of people “ringing the bell”. This is a tradition where my patients and staff gather when a patient graduates to their satisfaction. In most cases, that means that my patients are leaving my clinic pain- free. Of course, not everybody rings the bell. However, if you look at the many success stories you will understand that my approach should be more widely accepted as a whole, as an alternative to the philosophy that the body should be healed from the outside.

Why is my system not more widely accepted? My system is a complicated one, fueled by years of experience and trial and error. I am fully aware that it is an effective one that should be widely available across the world. While this is my ultimate goal, it will take years to get there. As we take the first steps in this direction, for now, patients have to travel to us from distant states and countries.

Another common question is: “I have had CRPS for longer than a year. Is there still hope for me?” Yes! In my experience, time passed has no effect on the effectiveness of my treatment.

Please know that every single patient that recovers should bring you enormous hope. Their bodies are not more special, more magnificent than yours. In my clinic, I refer to “white crow moments”: you only have to see one white crow to know that not all crows are black. No matter what, you have keep your hope alive! This must happen if you are to recover.

Editor’s Note:  The Neurologic Relief Center is a corporate sponsor of RSDSA. Our blog is not intended to provide advice on personal medical matters, or to substitute  for counseling with a physician.

Tracey’s Story

By Tracey Morales for the RSDSA blog.

Hi, my name is Tracey, I’m 48-years-old, married and have two daughters. I’ve had RSD for 21 years.

My RSD story starts in Jan 1998. A toy V-Tech computer fell on my left foot, fracturing two toes and crushing the MT joints (toe knuckles). After two weeks, I knew something was wrong so I saw a podiatrist, who by the 2nd appointment diagnosed me with RSD. He sent me to a vascular surgeon who confirmed the diagnosis. I went through 6 blocks and a 6-day epidural over 6 weeks.  All worked, but wore off within 24 hours or less. But I found the RSD came back fighting, worse after each treatment. My leg was now on fire, but ice cold and so discolored from my groin to my toes. It looked like someone colored my leg with a magic marker. The decision was made to do a sympathectomy, which was done on March 16th, less than 2 months after the initial injury. The morning of my surgery, my big toe was beginning to get gangrene. Well, it worked, I went into remission for four years. I went back to work, got married and had my second daughter. When she was two, she had her tonsils removed and I stayed in the hospital with her. I fell asleep in the bed with her, not realizing that my foot was pressed up against the footboard. I awoke the next morning stood up and it was back, I could not put any weight on my foot at all without excruciating pain. I saw my Dr that week and he confirmed the RSD was back. My only real option was meds because the sympathetic nerve was gone down my left leg. It had started to regrow at the base of my spinal cord a 1/4 of an inch, that very tiny growth was enough for it to come back. The RSD ended up going full-body over the next 5 years, I was bedridden 95% of the time. I tried more blocks, lidocaine infusions over the years, as the nerve grew more, but nothing worked. It continued to get worse.

A friend suggested ketamine infusions with a pain specialist that she worked with, Dr. Robert Schwartzman, who was doing experimental ketamine infusions. I had to wait a year and a half for my appointment. I started the infusions in Jan 2007. I went initially for 10 days, then for 3 days every 2-3 months for booster infusions over a period of 10 years. The first 8 years worked pretty well. During the last two years, it seemed the ketamine had stopped working. My pain went through the roof again and the RSD started to spread to my right leg. My last infusion was in December 2016.

In April 2017, I started using the OSKA Pulse Device and that has brought my pain down to almost nothing. It’s helping with so many different symptoms and I have been able to take back my life and do the things I love to do again. I’m getting better relief from the OSKA than I did from the infusions. My pain was an 8/9/10+ on a bad day, the RSD was starting to spread into my right leg and a good day was a 5/6, with the infusions. My pain today is a 1/2 on a good day, and a 3 on a bad day, which is rare. The weather doesn’t bother me anymore.  I use to get 3-5 migraines every week and I have not had one since I started with OSKA. I also use to get shocking/electrocution type pains down my leg, those have stopped too. I haven’t had a flare in over a year. The swelling and discoloration are also gone. I’m in the process of decreasing my pain patch. I should be totally off it in a few months, then I’ll be off all meds.

I have managed to find some good in the bad and have started drawing Awareness pictures to keep my mind off my pain. That’s led to a Facebook Artwork page and a store on Zazzle where my designs are available on T-shirts, Fleece Blankets, Leggings, Mugs and many other items. I have items for over 40 different illnesses. I have made several donations with my royalties and plan to make more as time goes on.

Below is some information on the OSKA Pulse Device and some pictures of my RSD foot & leg before and after using the OSKA for several months.

Individuals may contact me at [email protected]

INFORMATION ON THE OSKA

Oska Pulse is a small portable PEMF (pulsed electromagnetic frequency) device. It’s the size of a cell phone. It has no wires or electrodes, and can be used anytime anywhere. It charges like a cell phone. It decreases inflammation, increases blood circulation and improves range of motion. It works on a cellular level.

When cells are injured or have degenerated, they lose their electrical potential and are no longer able to exchange ions, causing inflammation and pain.

Oska Pulse uses optimized PEMF to restore the electrical potential cells need to receive nutrients and oxygen, which stimulates cellular regeneration—relieving pain, and activating the body’s natural healing process.

It works great for all types of conditions including RSD/CRPS, POTS, Fibro, Lyme, MS, RA, TMJ, Migraines, Endometriosis and much more. I have a list of 150+ different conditions that PEMF can treat.

The great part is it doesn’t even have to touch your body to work. You can strap it to you, your arm, back, leg etc. Or you can just set it next to you or the affected area. You can put it in your pocket or your purse, on your lap, it will still work. You don’t feel anything, no tingling, no zapping, no vibration, nothing.

There are no side effects that have been reported. If it’s used properly, at least 6-8 times a day consistently, more if you choose to, it should work and give you pain relief. You have to be consistent and patient. Some people see results within 2-4 weeks, others it may take up to 2 months. Everyone is different but once you start to feel results, they only get better with continued use. It’s not a cure, but can reduce the pain so that you can get back to life and doing things you used to do.

The device can be ordered here:

$55 will be automatically taken off at checkout so the cost will be $344 USD. You’ll also get free shipping in US and a 30-day full money back guarantee. If this link is used, the company is willing to give an extension to 60 or 90 days on the guarantee if needed.

Editor’s Note OSKA is a corporate sponsor of RSDSA. Our blog is not intended to provide advice on personal medical matters, or to substitute for counseling with a physician. We asked Ms. Morales to share her story as she been a member of RSDSA’s community for many years and has responded well to this treatment and OSKA does offer a 30-day money back guarantee and they mean it.

 

Jennifer’s Legacy

Written by James W. Broatch, RSDSA’s Executive Vice President, Director

I want to introduce you to a special book which was recently published as a testimony to Jennifer Abramson’s brief but wonderful and impactful life.

Jennifer lived only 31 years. However, her wisdom and can-do spirit live on in JEN’S Gift, a book which is filled with Jen’s poems, insights, and quotes that touched her soul. The posts were uploaded to her Instagram account lovingly titled Goal2Soul (Sending Out Unlimited Love).  Annie Abramson, Jen’s mother writes, this is Jen’s gift to us. Every page reflects the humor, wisdom and feelings we need to help us appreciate our own journey in life… May her gift inspire you and may you too be touched by her love and kindness.”

Jennifer was a beautiful young woman who graduated with a BA in Communications from Rutgers and worked for a publicist until discovering her passion for acting as a corporate host and spokesperson while acting in commercials. But life can change on a dime. Jen developed Lyme disease and was exposed to black toxic mold which entered her body. After years of treatment for Lyme and mold, she developed Complex Regional Pain Syndrome CRPS Type 2.  Rendered homebound with indescribable pain, Jen created her Instagram account posting beautiful, unique photos with insights, quotes, clever humor, and wisdom that will inspire you. Jen passed away in November 2016.

Her Mom took her creation and published it, hence we have Jen’s Gift! It is truly a special read and will touch your heart, a book for all ages.

ALL proceeds from the sale of Jen’s Gift will be gifted to RSDSA, to help promote greater awareness of CRPS, further research, and help find better treatments and a cure.

Diane Martin shared her thoughts after reading JEN’S Gift, “my daughter and I had the honor of knowing Jen. She was such an inspiration to all. Jen’s Gift was an such an amazing inspirational book. Jen had a gift for words. Her book is filled with such beautiful quotes and pictures that went along with them beautifully. Jen was wise way beyond her years. I found myself laughing, crying at times and learned not to take life for granted.”

To purchase your copy, please visit jensgiftbook.com.

Minimizing Pain

By James W. Broatch. MSW, RSDSA Executive Vice President, Director

Earlier this summer, RSDSA conducted a short survey of the RSDSA community asking individuals with Complex Regional Pain Syndrome (CRPS) what practices, medications, i.e. what is helping you to minimize your CRPS.  In other words, as John Lennon said, “what is getting you thru the night?”  As CRPS is the only medical condition with complex as its first word, a caution, whatever works for someone else may not be helpful to you. We received many, many replies.  I’m sending a warm thank you to all who participated. Today, I would like to share a few responses. Email me at [email protected] with minimizing pain in the subject line and I’ll send you all of the replies. 

Sandy Stoll Miller shared, “not much minimizes my pain. I figure I’m going to be in pain doing nothing or if I’m doing something…I decided to get a Harley Davidson a few years back and I ride to desensitize my nerves and (it) helps to take my mind off it.” Her mantra, “stay active regardless of the pain and reflect on what you accomplished instead of what you didn’t.”  Sandy also mentioned movement in water as “her biggest source of non-medicinal relief.” Gentle exercise in warm water was mentioned numerous times by others as a way to move. KEEPING MOVING was a frequent refrain.

Linda Davis participated in the Functional Restoration Program at the Bay Area Pain and Wellness in Los Gatos and “it changed her life. I was given the tools (‘profound psychological, physical, nutritional, wellness and daily lessons to distract my thought pattern’) to turn my life around 180 degrees….I use every tool I was taught to live with not against my pain.”

Cindy Caserta utilizes “prayer and faith in God, exercise and physical therapy, and getting out of bed every morning, getting dressed & actively participating in my day, no matter how difficult it is or how long it takes. I keep to a loose schedule & work on my daily goals.”

Dawn Giddings discovered that “having a hobby or something to be passionate about is healing. Art is my way of focusing on something other than my pain. When I’m creating a new sketchbook, stitching on an art quilt, drawing graphite portraits or painting, I get into the ‘zone’ and even though the pain is there, it gets pushed to the background.”

Steven Glover shared “out of all that I’ve have done, I would say the ketamine infusions gave the most relief, but they were never a permanent solution, as they only lasted anywhere from 4 to 6 months….One thing that intrigued me was what I had read about Panax Ginseng. In short, here I’m; currently into my Ginseng treatment and I can honestly tell you that my pain score has dropped from a daily 8-9 to a measly 2-3. I’m off all of my prescribed medications and I’m feeling terrific.”

Duane Satterfield reported that he utilized Suboxone to avoid withdrawal while transitioning to a pain pump. “I had NO withdrawals at all! I was terrified of stopping the Opioids!! A book called ‘The Secret’ has helped me to reprogram my brain to be positive. I highly recommend it.”

Many individuals mentioned changing their diet. Tracy Kozikowski changed her diet to “whole foods, no processed food diet. Eating a plant-based diet minimizes the inflammation which was huge in fighting RSD pain. I was amazed.”

Medical cannabis. CDB oil. Ginger. Turmeric root. LDN…… So many helpful remedies were mentioned.

One of my mantras in my life is the only thing you can control is your attitude; embracing that, I would like to end with a very positive quote from Beverly Hinds.

“I try to be positive for little things, the wind, the birds, new dawning, 2 hours with no burning, the laugher of grandchild, hug from my supportive husband, and talk about the pain, sometimes talk back to the pain. My faith gives me courage, my family is my cheerleaders, think it could be much worse. Live in the moment, never give up.”

Amen! A special thank you to Sammie Anderson who compiled these suggestions! Please remember, email me at [email protected] with minimizing pain in the subject line and I’ll send you all of the replies.

Walking the Fire: My Journey to Pain Management Living With CRPS

By Roy N Greenwood

I was diagnosed with CRPS in my right leg in late 1996, before the internet had really become a thing and most research was still done at the local public library. A simple slip and fall while working on a cold and rainy night back in December of 1995 changed my life forever. I found out quickly that going through the Worker’s comp system by itself was going to be a total an abomination, but doing it while suffering through the first stages of CRPS when early intervention is critical, would be even more distressing. At first, the insurance refused to accept the diagnosis or even pay for any of the treatments or durable medical equipment. We managed with the help of legal counsel to eventually secure the aid we needed to begin navigating the tricky waters of treatment. I was soon assigned a nurse case manager by the insurance and the treatment began in earnest. I went through seemingly countless rounds of Sympathetic Nerve blocks, brutal contrast baths, and trial medications both orally and intravenously coupled with therapy sessions just to learn how to walk all over again. I dreamed of recovery and hopefully returning to work and a somewhat normal life. But I began to see right away that it wouldn’t be quite as easy as I had thought

After nearly 3 long, torturous years of continuous treatment, I was finally declared permanent and stationary and sent for job retraining since the court ruled that I could only do sedentary work. Eventually, I earned a vocational certificate in Computer repair and set out to try to return to normal life as best as I could. After job stints with Micro Menders, EarthLink, Inc. and California Networking, it was clear that my body simply couldn’t take the daily grind anymore and it would eventually just give in to the escalating pain level. Treatment resumed, but now I would have to shoulder the burden of the cost through my own insurance since the Worker’s Comp case had been completely settled out years earlier. Just as before, I began rounds of nerve blocks, therapy sessions and pain medications that left me dazed and confused from the side effects.

By 2002, seven years after the injury, it had become clear that I simply couldn’t work anymore and it was only a matter of time. Medical retirement at the tender young age of 36 years old became my bitter pill of reality. Now married with a young family of three children, the daunting specter of being disabled from here on out with no steady income other than short term and long term disability was frightening to say the least.

Once the dust had settled and I began to receive disability, I found myself sitting around with nothing but time on my hands, and of course all I could think about was my pain or my treatments. By this time I had become a candidate for the spinal column stimulator implant and was scheduled to have the first of 8 surgeries to eventually make it a feasible treatment. I would also eventually relent to having the drug infusion pump implanted as well, although it would ultimately end in failure. But no matter what treatment I yielded to, I found that an unoccupied mind was by far the worst enemy of someone suffering from CRPS. It was then, that I realized that although the disorder had robbed me of my mobility and stability, I had to find something to occupy my mind rather than sitting around dwelling on the pain or treatments for that matter.

What I eventually discovered was that minimizing pain with CRPS wasn’t about the right combination of drugs, the right wavelength on the TENS unit or the frequency on the spinal column stimulator, it was about mind over matter, or in this case, the pain. I quickly found that keeping my mind occupied went a long way towards surviving on those harsh days when the waves of burning pain are relentless and never-ending. Finding something to do to keep it from worrying about what was going on with my body became my primary focus. I had come to accept that CRPS was a foe that could be rarely defeated, and if I was going to go the distance, or the full fifteen rounds with it, I would have to take my mind off of those grueling middle rounds.

I dabbled in plastic modeling but quickly became bored since it was something that most people could do with little effort. I was quickly discouraged until I sat around one day looking at empty soda cans and imagining all the things they could become besides a pile for the recycling bin. Something told me to test my theory and so I set began crafting and attempting to model with cans in earnest. After some early experimentation, I found that with the right templates, building pretty much anything was possible and soon my mind was occupied with all of the possibilities. That was over 15 years ago and since then, I’ve won a few IPMS awards competing against some of the best modelers in the country and I’ve even had a few of my creations featured in FineScale Modeler and Star Wars insider Magazines. I’ve built models as big as 8 foot in length requiring well over 1500 cans and 4 months to complete including a Life Size 1:1 scale R2D2 built with the help of my family that you can see here.

What I discovered during my own personal journey was that minimizing the pain was just as much about finding something constructive to do as it is following your treatment plan and listening to your doctors. I’ve had RSD in the right leg for over twenty-two years now and although it has robbed me of my pride, stability and mobility, it has not taken away my ability to craft with my hands nor my passion for creating new things. Each day, I build something, even if I don’t feel like it, because more than anything it allows me to cope with CRPS.

To fellow CRPS sufferers, I would say, we cannot change the circumstances of who we are and how we all came to be afflicted with this terrible disorder, but we can choose how we intend to react to it. The pain will always be with us, but choosing to find a way around it and accomplishing something positive along the way is how we beat it. That’s how winning is done…

Life With CRPS In Europe With The RSDSA Board

Ilona, a member of the RSDSA board and of the dutch pain society, details what it is like to have CRPS in EuropeBy RSDSA Board Member, Ilona Thomassen

What is it like for people living with CRPS in Europe? Ilona, a member of the RSDSA Board and of the Dutch Patient Society, addresses some of the similarities and differences between CRPS in America and in Europe. While some approaches are similar, some are quite different. What surprises you the most?

I am writing this blog from the other side of the earth, in Europe and, more precisely, in the Netherlands. There are also a lot of CRPS patients here.  There is a patient’s society to [help] inform patients, to support them, and to organize meetings. I have been the chair of that organization for many years and there are about 1800 members, 40 volunteers, and a board of 7 individuals.  Our society started 30 years ago with 4 patients and Prof. Goris. He was one of the very few in the Netherlands, and maybe worldwide, who took CRPS very seriously.

How did I get into contact with the RSDSA? In 2003, we wanted to organize our first congress for healthcare professionals, especially physicians. We had never done that, so wanted to learn about this kind of congress and there is no better place to learn then by the RSDSA. They had a lot of experience. So, I went to Tampa to look at their congress in 2002.  I learned a lot and was not nervous anymore about the organization of our congress.  I met Jim Broatch, Mary Beth, and some other volunteers who all are still at the RSDSA.  I left with a lot of information and contacted some speakers, such as Prof. Baron, Prof. Birklein, and a psychologist. Our congress was a big success.

After a few years Jim and Dr. Peter Moskowitz came to the pain department in Rotterdam to talk about the 20-years research [study] of CRPS patients. I was also invited to attend that meeting. I do not remember how that pain department got involved with this research, but I had some contact with Peter and Jim afterwards. In the following years, the RSDSA and my organization were involved in the Bath Consortium and the contact got more intensive. We saw each other in Chicago, Zürich, Bath, and Amsterdam over the next few years. One day, I got an invitation to be a member of the board. I fully agreed and there is now a telephone meeting every 6 weeks or so.

In the beginning, it was quite shocking and impressive to get the inside information of the RSDSA. Shocking was the amount of work that was going on. Impressive were of all the activities RSDSA runs as an organization; the meetings, the peer-to-peer contact, the website and all other informational sites, their political activity about medication and SH, and raising money, and more. It was a little bit overwhelming (no not a little bit, very overwhelming)

There are big differences between our organizations, but also several similarities. The Netherlands are small. The travel distances do not take much time comparing the distances patients have to travel in the USA. In 2 hours, you are from East to West with a little bit more time from North to South in the Netherlands; that is the whole country. One knows another very well and there are short lines between physicians and other health care professionals and our society. I know all the important professors/ researchers and have an easy-going line of contact. I was involved in the development of the evidence guidelines CRPS 2006/2014.

All patient organizations get money from the government, about 45,000 euro and membership fee of about 5000 euro. Most activities can be paid with this money.  It takes some time for patients to get a diagnosis of CRPS, especially by GP’s. That is because they do not often see CRPS, just 1 or 2 patients a year and then with different symptoms. That makes it difficult to diagnose. But in almost all pain clinics and rehabilitation centers, they know quite well about CRPS and treatment. We do not know about visits to the SH for pain medications in weekends. We also do not have the very big problems (yet) about opioids as in the USA.

A really big difference is the Health Care System. In the Netherlands, you are obligated to have a basic health care insurance and all of your medical treatment is payed for.  You can also get extra insurance, for example- more physical therapy or alternative treatment.  Another difference is that disabled people or those affected by chronic illness that are are not able to work anymore get a payment from the government (that is not a lot but it helps you). It does not happen that you have to sell your home because you are not able to pay for your treatment. I think patients in pain and having a chronic illness have a lot more trouble in the USA than here.

The similarities

All patients worldwide have the same heavy pain, their symptoms with more or less disabilities, work problems, psychological problems, and even social problems. They are similar with their CRPS.  We, the RSDSA and the Dutch Society, work most with volunteers, but it is harder for both societies to get new and younger volunteers. We organize meetings and also both societies have the experience that lesser people will attend those meetings (even here with the relative short distances).  We also have the experience. Every year there are less members.  One can find the information on the internet and social media. For most people that is enough.

But what we really share as RSDSA and our society is our commitment to help CRPS patients in any possible way but most with good information and contact.

Europe

In Europe groups from Germany (Network), England, the Netherlands, Spain, and maybe Finland have contact with each other. We form a sort of Global CRPS community. We share articles, news and sometimes just ideas or have a chat.

 

I hope you like this blog about CRPS in Europe and the Netherlands. I wish you well.

 

Ilona Thomassen

Chair Dutch Patient Society

Board Member RSDSA

Belated Mother’s Day- Honor Thy Caregiver

Melissa Wardlaw writes about how we can honor our caregiveers that care for those of us with CRPS RSDBy Guest Blogger Melissa Wardlaw

As a patient who has been living with a multitude of painful chronic illnesses for over 15 years now, I have had to reluctantly rely on caregivers. Being a highly independent and self-sufficient person my entire life (even living in my own apartment at 16), this has been a very difficult pill to swallow! The most pivotal caregiver and unsung hero in my life has been and still is my mother Donna. So on this Mother’s Day 2018, I honor her! Further, I will share some lessons learned about honoring the caregiver(s) in your own life.

Throughout my entire 20s, my focus was on my upwardly mobile and successful business career. But when I suffered a life-changing spinal cord injury during an epidural steroid injection procedure that went wrong, and was subsequently diagnosed with CRPS/RSD (and additional chronic medical issues), I was stopped in my tracks! Everything I had worked so hard for was gone in an instant and suddenly I needed my mommy – in a big way! Yes, my soon-to-be husband lived with me at the time, but I wanted and needed my mom the most!

Even though my mom had a demanding full-time job at the time, she jumped right in and sacrificed everything to be there for me. Along with my husband, she went to doctor’s appointments, came over and helped me, and just simply held me and told me it was going to be ok even though none of us had any idea if it would be. We were all scared and confused – we knew it was bad but certainly didn’t realize the extent of the far-reaching medical journey that was ahead at that naive point in time when CRPS/RSD was even less known than it is now. Not only were most doctors unfamiliar with this monster of a disease, but there were no Facebook or support groups, nor was there much viable information on the fledgling Internet as to what it all meant. So we were truly on our own – my mom and my then-husband as my primary caregivers – and me.

A few years into my medical journey, I ended up getting divorced – and no, ironically not because of my medical issues but that’s another story! After my divorce, my mom was my primary caregiver. Although I still lived alone, I was unable to drive – for almost 10 years total! I had to use a wheelchair and walker a lot of the time and similar to many CRPS patients with uncontrolled pain/symptoms, I rarely left the house or even the bed for many years. I needed help – and a lot of it.

It was a confusing and scary time for both my mom and me. I was in so much severe intractable pain, with changing and devastating symptoms and new diagnoses, along with the significant loss and grief that surrounded my “new normal;” because of all this, it was hard to focus on the fact that my caregiver was also going through the same life-changing loss and grief I was – she just didn’t have the physical piece. But she was watching her once vibrant and independent daughter being reduced to a shell who didn’t necessarily want to even exist anymore given the amount of physical suffering I was in. Those years were obviously very hard on both of us and I know many patients and caregivers out there can certainly relate.

Knowing what I know now, given that my pain and symptoms are much better controlled and managed, what would I have done differently to “honor my caregiver?”

1) Communicate and acknowledge her pain
I was so wrapped up in my own suffering, crisis and needs, that I rarely took time out to check on my mom or ask how she was handling all of this. I was also naive to think that it wasn’t affecting her greatly because she wasn’t experiencing the physical components, which was completely false. She was/is married and was working full-time (now retired), yet gave all her extra time and energy to me. Inevitably this put a strain on her responsibilities and other relationships as well as ours. Needless to say, we developed some friction and resentment towards each other, which was merely hurt, fear and frustration with the situation, manifesting as anger.

So it is important to communicate with your caregiver(s) – to check in and ask how they are doing. They need to express their feelings and pain too as they are suffering right along with us. So many lives are impacted from the effects of a chronic illness. Often times, household dynamics and responsibilities shift, which necessitates spouse caregivers take on a whole new set of tasks that may be foreign to them. Children may need to step up household chores as well and may act out as a result. They can also be frightened of what they don’t understand, especially when it comes to a parent dealing with medical issues.

It is important to be cognizant of how your medical crisis is affecting loved ones as well as yourself and not shy away from discussing it or simply asking questions. Some caregivers aren’t comfortable discussing their feelings and will be more likely to withdraw or deny them and that’s ok too. If appropriate, it may help to get a Counselor involved, as dealing with the stress of caregiver/patient (and other) relationships has many different facets that we as the involved parties don’t always understand.

2) Talk about things other than my medical situation
When we are consumed with a medical crisis, it can be hard to think, let alone talk about anything else. Don’t forget that you and your caregiver(s) can find other things to discuss – and you should. Ask him/her about his/her day, talk about current events or just watch a movie. It can bring much-needed relief for both of you to take a break from discussing your medical situation, and keep in mind it can also distract your pain/symptoms as well as your caregiver’s worries to laugh and talk about something – anything else! One of the things I remember when I was at my worst is my mom telling me she loved to see me smile and laugh again! No one wants to constantly talk about negative and depressing things and sometimes it just helps to feel normal through a little laughter! They don’t say “laughter is the best medicine” for nothing!

3) Thank and appreciate her more often
I don’t know what I would have done without my mom – both then and now. She would help me with errands, laundry, cooking, driving me to the ER and countless other appointments (in and out of town), finding other caregiving assistance and basically anything else I needed without ever asking for anything in return. In a sense, I took this for granted and put a lot of pressure on her because she was my mother. I could have thanked her and told her how much I appreciated her way more than I did.

I realize not everyone has a mother or caregiver as dedicated as I do and it hurts me to think my focus was turned so inward on my own suffering that I just assumed she would be there for me because she was my mother. She has shown me the value of true commitment, loyalty, forgiveness and unconditional love and I tell her how much I love and appreciate her and thank her now probably more than she wants to hear!

4) Encourage her to take better care of herself
As most patients know, when our pain and symptoms are unmanaged and out of control, we become more focused on trying to “fix” or cure them as opposed to trying to live with or manage them, which is impossible when dealing with an incurable chronic illness. Desperation sets in and our worlds become smaller and smaller. It’s as if we develop tunnel vision and cannot see anything or anyone around us who is also suffering because our suffering is worse, right? WRONG! For lack of a better term, it becomes all about us! We become self-consumed to the point of self-pity. And in this downward spiral, we have a tendency to drag our caregiver(s) down with us. Of course this is not any more healthy for them than it is for us!

Ever heard the term “misery loves company?” Well I think at some points along the way this quote fits perfectly. It’s as though the fear and stress of our medical issues causes us to grasp ahold of those closest to us and not let go. We are scared if they go anywhere or spend time with others, or have fun they will leave and never come back and we will be all alone. After all, why would someone CHOOSE to be around the negativity and misery of chronic illness and pain when they can live a normal life? As patients, this is the tape that plays over and over in our heads and makes us cling to those we love in times of need. We don’t want to be burdens to anyone, to the point of sometimes pushing people away; but we also don’t want our caregivers to abandon us either. It’s a dichotomy.

In reality, getting away and taking breaks is what caregivers need the most! In order to be healthy and effective, caregivers need to take care of themselves FIRST before they can take care of us. So encouraging our caregiver(s) to live as normal a life as possible is exactly what we as patients should do. This means encouraging them to go out with friends, go on vacations, spend time in the spa, etc. – even forcing them if need be! When someone is acting as a primary, basically full-time caregiver (because I’ve been told even if they aren’t physically there with the patient, most likely they are thinking and worrying about the patient), it is exhausting – not only physically but mentally/emotionally, spiritually and for some, even financially. Caregivers need to ensure they do not end up as patients themselves! As they feel refreshed and healthier, caregivers will become better equipped to deal with the physical and emotional roller coaster of the patient’s needs which in turn will have a positive impact on the patient.

Of course no one would choose the role of a caregiver, any more than we choose the role of a patient. They do it out of love, duty and commitment to support their family member so we won’t have to fight the chronic illness battle alone. They want to help and it gives them peace knowing they can make our lives a little easier. Knowing they have dedicated themselves to the pivotal role of a primary caregiver should give us comfort that they will still be there for us even if they would have more fun doing something else!
So on this Mother’s Day and everyday, I honor you mommy, and all the other caregiver warriors out there who make living with chronic illnesses and pain possible through your undying support, friendship, advocacy and unconditional love. I am forever grateful. Happy Mother’s Day!

Melissa Wardlaw was diagnosed with CRPS/RSD as a result of a spinal cord injury (non-paralyzing) suffered during a routine medical procedure. She also suffers from fibromyalgia, lumbar and cervical degenerative disc disease, migraines and additional chronic medical issues. Formerly a Business Executive/Consultant with an MBA in Entrepreneurship, she is also a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer counseling/advocacy (pro bono) to those dealing with similar medical struggles. As a fierce advocate, she also runs both in-person and online Support/Empowerment Groups for CRPS/RSD and Chronic Illnesses/Pain in the Metro Atlanta area. Melissa is an avid volunteer and supports multiple organizations committed to rescuing animals and helping those with chronic illnesses/pain. She is a fur mom to two cats, who graciously “allow” her to live in their new house in Atlanta. She can be reached at [email protected].

Safety Month and RSDSA – What Does It Mean

Jenny, a support group leader, writes about safefty month and about what RSDSA does to help support groups succeedBy Jenny Picciotto for the RSDSA blog.

Support groups are incredibly important to the CRPS community. RSDSA works to help make sure that these support groups are equipped with the tools that they may need. Jenny, a support group leader, writes about the upcoming Safety Month and what being a Support Group Facilitator has done for her.

In June of last year, the RSDSA began an outreach program for support group leaders. I jumped at the opportunity to participate in their monthly calls. Having been the facilitator of the Oahu CRPS Support Group since 2013, I have faced many of the same challenges I heard described by other leaders; finding a place to hold meetings, getting the word out, selecting topics for meetings, and maintaining enthusiasm when attendance numbers are low.

Committing to being a support group leader is an act of courage. We understand how hard it is for people in pain to make the effort to get out of their homes and commute to a meeting, because each of us are facing the same challenges our support group members face. We juggle our own physical and emotional needs while dedicating ourselves to be available for our peers. We know how validating, encouraging, and informative it is to meet people who understand what it is like living with CRPS, and make a conscious choice to create a space for others to have the same experience.

Sharon Weiner, a member of the RSDSA Board of Directors who has been a support group facilitator for nearly two decades, is spearheading the Facilitators Support Group (FSG). Her vision is to develop a strong support network for these groups who provide a vital community for the many CRPS patients who often struggle alone and rarely find people who understand what they are going through. I have been pleased to have the chance to get to know her over the last year, and am inspired by her ambitious goals. She asked me to write a blog post about our group and what we have been up to.

FSG is developing a library of meeting guides to help support group leaders organize their meetings around practical, applicable ideas about living with CRPS. As a facilitator, I am constantly looking for good content! Sharing resources with my group provides a central theme for the meeting, and a starting point to talk about how we cope with or overcome the difficulties we face.

The first guide is set to premier just in time for June, which is National Safety Month. It is chock full of ideas about things you can do to make your home safer and steps you can take now to be better prepared in the event of an emergency. This big topic is broken out into four sections: medical records and medical preparedness; household and personal safety; disaster awareness and planning; and suicide and crisis management. Any one of these subjects could be the centerpiece of a support group meeting.

We hope every RSDSA support group will take advantage of these resources and come together as a community to raise awareness about living safely with CRPS during National Safety Month.

I don’t know how many of my readers have been to a support group meeting, but I hope you will be motivated to see if there is an RSDSA support group in your area. If not, please consider starting one. There is nothing as powerful as shared experience.

The Facilitator Support Group (FSG) is a resource for new and existing RSDSA group leaders. We offer a monthly support call, a Facebook page, and a grant program. We are developing resources for facilitators including how-to publications, meeting guides, and a leader’s conference.

If you are a support group facilitator and would like to join FSG or apply for a grant, please contact Jim Broatch, 877-662-7737 or [email protected].

If you are interested in joining a support group you can find a list of RSDSA registered support groups at: https://rsds.org/find-a-support-group-near-you/.

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Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group.

Please consider making a donation to RSDSA today!

Not An Inspirational Blog About CRPS

Not An Inspirational Blog About CRPS, Melissa details the negative emotions that some people living with CRPS exeperience

By Guest Blogger Melissa Lanty

Sometimes, all of the positive, wishful thinking blogs can be too much, especially for members of the community that are feeling frustrated. Melissa is here to let you know that you are allowed to be frustrated and aggravated and that everything is not always sunshine and rainbows in the world of CRPS

If you are looking for the positive, inspirational story then I suggest you stop reading, this isn’t it.  I am out of examples of ways I’ve overcome this illness, I have no “bright side” to share today.  Today I am mourning, today I grieve.  I don’t want the positive encouragement, I don’t want the pity, I just want you to understand that I’m never going to be able to move on, or get over the girl I was before this, the girl I could’ve been if this never happened to me.  Some days it’ll be easier for me to accept the sick version of me, some days I might even be great, but today just isn’t one of those days and that needs to be okay too.

I watch others thrive and excel doing the things I used to love, the things I used to be able to do.  Knowing I can never do those things anymore.  It hurts. You try to give me hope and tell me “never say never” that hurts even more.  That girl is gone, she can’t come back. Telling me to “be positive”, saying “it could be worse”, and to “look on the bright side”.  So, I force and smile and agree knowing that makes you feel better, and really, it’s just made me feel worse.  I know you want me to be okay, I know you care, I love you for that I do, but sometimes I just need to be sad, I just need to grieve, and mourn.  I’m not the girl I used to be, CRPS has stolen the life I could have, should have had.  Most days I put on my brave face and I face the world, but today I just can’t.

I need you to know that it’s okay for me to feel this way.  I need you to know there is nothing you can do.  I don’t need to be shielded, pitied, or consoled.  I don’t need positive reinforcement or suggestions about what new meds or therapies I should try.  I just need you to say, “you’re right, this disease sucks” and let me cry.  You don’t have to try to make me feel better, you don’t need to cheer me up, it won’t work anyway, and I just need to get this out.  I need to grieve and mourn. Maybe tomorrow I’ll be able to put my brave face back on.  Maybe tomorrow I’ll have some positive vibes to share, but today isn’t one of those days.

Top 5 Clothing Brands for Complex Regional Pain Syndrome

Samantha writes about clothing that is Complex Regional Pain Syndrome friendly
Me wearing LuLaRoe Leggings and a “Lindsey” kimono style shawl

Written by Samantha Anderson

Fashion and Complex Regional Pain Syndrome don’t always walk hand in hand. Trying to find clothing that is comfortable can be a task. This article features primarily women’s clothing brands (although some fit both), but stay tuned for a men’s clothing article!

Finding comfortable clothing can be a hassle for every day people. Adding Complex Regional Pain Syndrome into the equation can complicate matters even more. Every person with CRPS is so different. Some people need clothing that does not move around very much and stays close to the skin, as the movement of the fabric causes pain. Others cannot wear tight clothing and need things that are more flowy so they are not restricted and there is not constant stimulation happening. Then, add in whether someone has upper, lower, or full body Complex Regional Pain Syndrome and more issues present themselves. Some brands of clothing are better for tops whereas others may be better for bottoms. Then, some brands are more female oriented instead of male oriented. It can be hard to determine what is best.

As someone that started with lower body Complex Regional Pain Syndrome, but is now facing upper body CRPS 11 years later, I have had a lot of trial and error with clothing. For me, every day is different. Sometimes, I need clothing that fits close to my skin. Other days, I need the loosest clothing possible. This list of top 5 brands of clothing is my own opinion based on my life with Complex Regional Pain Syndrome. I included some information about pricing and some of the pros and cons as well!

  1. LuLaRoe

LuLaRoe is a clothing company known for their “buttery soft” leggings. I had heard many of my friends with Complex Regional Pain Syndrome talk about this company, so I decided to check them out. After I ordered my first pair of leggings, I fell in love. I have quite a collection now. They are super soft and are great for the days I cannot handle flowy fabric. Their tops are also great and come in a variety of styles. The Classic T isn’t tight around the waist or arms, but is flattering. The Perfect T is very flowy and can be styled in a variety of ways. Then there are tops like the Lynnae, which is a long-sleeved version of the Classic T, and the Gigi which is a tighter fitting shirt. Most consultants will tell you about the fabric of the item and will detail how soft it is if you ask. I was never one for patterns (I love black clothing), but this also helped me branch out into different colors and patterns in my wardrobe.

Cost: Leggings are generally $25 and tops can vary from $28-$45.

Pros: Sizes offered go smaller than XXS (you can order kids sizes) and go up to 3XL. Some of the 3XLs are actually the equivalent to 5XL. There are a lot of different styles that allow you to optimize your comfort level. The items are so comfortable and versatile. There are also men’s styles and “dressy” styles available.

Cons: Items can only be bought on Facebook or in person, as that is the way that LuLaRoe sells their products. Products are a little pricey and aren’t supposed to be machine washed.

  1. C9 by Champion

C9 by Champion was a bit of a happy accident for me. I was looking for a top to wear to an appointment, which needed to be like a workout top. I then found C9 at Target (my home away from home). These items were a lot like Under Armor without the steep pricing. Everything was pretty reasonable. There were tops, sweatshirts, and pants for men and women. The tops are relatively silky, which is a nice feel compared to some other fabrics (the best it can feel when you’re in pain). These are great for hanging around the house or going to appointments. If you can do basic workouts, these are also great for that.

Cost: Price vary from about $7-$50 (higher prices for nice jackets).

Pros: Easy to access. Target offers deals on these products on a regular basis (online, too). There are a variety of colors and sizes. Very lightweight.

Cons: Sizing can vary from item to item and there are not any “dressier” items for more formal occasions.

  1. Gildan

A lot of people own Gildan items without knowing it. Gildan is generally one of the main providers for screen printers. Event shirts are normally from this brand and get softer with each wash. This brand is also sold at Walmart and on Amazon. They offer a great variety of products, from t-shirts to sweatpants. I have a lot of event and concert t-shirts, which I wear more frequently than most of my clothes. It is almost like the fabric molds to your body as time goes on. It is also a pretty cheap option, even if you are ordering custom shirts from websites like Teespring.

Cost: Varies, but generally under $25

Pros: Affordable clothing. Gets softer when it is washed. A variety of different looks and customization options.

Cons: Cheaper shirts do not always last as long, depending on how well it was made. Fit can vary from item to item. Starts off a little itchy.

  1. Victoria’s Secret/Pink

Victoria’s Secret has branched out to sell much more than undergarments. They offer a variety of clothing including t-shirts, sweatpants, sweatshirts, and yoga pants. Their Pink line features some Sherpa lined items and soft, loose clothing. Their Sport line offers tighter, stretchy clothing that keeps the sweat away. So, whether you need something flowy or something tight, Victoria’s Secret can fit your needs. They are generally pretty true to size, although their size variety seems to be XS to XL. I am a lover of all things fleece and Sherpa, so this line is my dream.

Cost: Pricy, generally upwards of $25 and averaging at $50.

Pros: Great variety. Soft or stretchy fabrics. Variety of color options. Easy to order online or in store.

Cons: Generally women’s only clothing. Expensive. Brand is often in large letters on the clothing. Size range.

  1. Chin Up Apparel

I stumbled upon Chin Up Apparel as a happy accident. I had a favorite shirt that I bought at a local store and wanted to find more of them. I looked at the tag, which was printed on the shirt instead of an itchy tag, and it said Chin Up. At the time, I was not aware that this was an entire line of items. On their website, the declare themselves to be a workout line. They have all different styles of t-shirts and sweatshirts. These items always have fun sayings on them, which can really brighten a day. For example, one of the baseball style tees on their site says: “After This We’re Getting Tacos,” which truly spoke to my heart. The material is generally very light and airy, which is nice for the days where clothing is just so painful that you’d rather wear nothing. This is a nice alternative. Plus, the sayings on the shirt can either tell people to back off or can make you smile with the silliness. I just wish they made pants. I should pitch my ideas.

Cost: $19.95 to $37 (sweatshirts are the $37 items).

Pros: Funny sayings cheer up the gloomiest of days. Sizes seem to be flexible. Material is soft and airy. Can be found in stores or online.

Cons: Limited men’s items. Can be considered pricey. Some of the sayings may not fit your life.

 

Clothing can be stressful. While we joke that it takes me a while to get dressed because I’m indecisive about what to wear, I am generally trying to gauge my level of comfort. Complex Regional Pain Syndrome and clothing may not be the best of friends, but these brands can at least make them acquaintances. I hope you are able to try out some of these brands and that they bring you the most comfort possible. I will continue to research some men’s fashion and try it out to tell you about the comfort of other brands to maybe write a follow up to this one! Good luck and rock what you wear!

Please consider making a donation to RSDSA today!