But I Still Look Fine – Living with Chronic Pain/CRPS

Tara White, RN, blogs about how she still looks fine, an issue with invisible illnesses such as CRPS RSD. She is an advocate for chronic pain. Read I Still Look Fine today.By Guest Blogger Tara White, RN

I used to be a very active woman. I proudly served as a corpsman in the United States Navy for five years. I went to Nursing School and loved working in Obstetrics for twenty years. I climbed the difficult back of Half Dome in Yosemite National Park twice, and felt alive while cycling many hundreds of miles a year. I loved training with weights, power walking, skiing, kayaking, yoga, and many other outdoor activities.

Like many other women, I made a very poor choice of a first husband, though got a wonderful daughter out of the deal. Raising her by myself with microscopic child support but tremendous family support, I’ve watched her bloom into a lovely woman in her own right. Although I didn’t realize it at the time, my inner light was shining brightly. I looked fine.

It started out as carpal tunnel, although I did not have the typical presentation. My wrists ached and I couldn’t even get my left (dominant) arm in a position that didn’t produce horrible nerve pain. After surgery, I fully expected to return to work as a nurse until retirement. But, it didn’t work out that way. My pain changed after surgery but never went away. I made an attempt to return, because that’s what nurses do. Diagnosed with Complex Regional Pain Syndrome (CRPS), my hands, wrists and left elbow felt like they were on fire or had hot wires shoved in. I only made it a few months. But, I still looked fine.

It took two years for the guilt and shame of not being able to work or “pull my share” to slowly evolve into acceptance. Needing purpose in my life, I turned to the American Chronic Pain Association and became a Facilitator for the Sacramento area. I wanted to help others suffering from debilitating chronic pain. Luckily, prior to being hurt, I had met the love of my life and we married nearly two years later. God knew what he was doing when he gave me an engineer.  I would need his wonderful skills many times over. So that I could continue cycling, he designed time trial bars so that I could ride (yes, I was always peddling) as a stoker in the back  of a tandem while he controlled everything from the front. We toured Europe and nothing gave us more joy than the freedom in Grand Mother Nature on a bike. A health nut, I continued exercising with my legs and taking care of myself.  I was still disabled, yet I could still do many of the things I so loved. But, I still looked fine.

Then, nerve problems reared their ugly heads in my left leg. I stumped physicians because none of my symptoms fit neatly into any category. Multiple nerve entrapment surgeries later, I could still keep going. I could still worship Mother Nature by cycling and long walks. The recoveries were tough, but with my wonderful husband by my side, I could still be me. And, I still looked fine.

Now, as I write this everything has suddenly changed. I tried to do too much too fast, and I find myself suffering anywhere from walking on needles, to electrical jolts, to exquisitely painful electrocutions. I am praying for the courage and hope to go on, and choose to stay in denial. I can do no more than walk around the house, to the mailbox, or a light, short errand. My physicians are trying, but I have many “extra” inflamed nerves trying to fit into the space made for one, am a big scar producer requiring a repeat of previously done surgeries, and even produce scar formations the physicians have only heard of or seen at conferences. But, I still look fine.

I continue to Facilitate for the American Chronic Pain Association and have added phone banking as much as possible for my heroine and Presidential Candidate, Hillary Clinton. (This, too, is difficult as I have one paralyzed vocal cord from thyroid cancer). I cry all the time, yet cling to hope. As a child’s life broadens from home, to school, to the whole world; mine is diminishing just as quickly in the opposite direction. I will go down fighting and clinging to denial. My inner light is fading fast. But, I still look fine.

My Journey Back to Health: Barbara Wall and RSD

Barbara Wall details her journey back to health. Her life with CRPS RSD has changed thanks to Dr. Katinka van der Merwe's treatments. By Guest Blogger Barbara Wall, Power Over Pain of Arkansas

This is a success story from someone with RSD/CRPS that saw Dr. Katinka van der Merwe. To read our article on Dr. Katinka van der Merwe’s approach, click here.

I was living life and enjoying all things around me. I did not feel that I took much of anything for granted. In 2005, I suffered a severe injury to my cervical spine (broken neck) as well as other injuries. As if dealing with a broken neck was not enough I received the diagnosis of Reflex Sympathetic Dystrophy (RSD), today known as Complex Regional Pain Syndrome (CRPS). I had the opportunity to practice as a registered nurse for twenty five years. I was hoping to get beyond this illness and the acute daily pain in order to continue my professional career. I did absolutely everything the doctors ordered and pushed myself each and every day during physical therapy. After a host of medication changes and numerous stellate ganglion blocks, lumbar sympathetic blocks, and cervical epidural steroid injections my body did not go into remission. I was forced to quit a career I absolutely loved and began focusing on my health. Every day was full of appointments, disappointments, physical therapy, occupational and pool therapy.

I was able to establish a great team of medical doctors and felt comfortable with my care. The pain continued to overwhelm my mind and body. My family remained so supportive and encouraging, but I needed a strength so far greater than they could give. Each day was such a challenge, but with God, family, and my own inner strength I was able to wake up every morning and tell myself “I can and I will do this.” As days, months, and years passed by with constant pain, I was able to keep my attitude in the game of life and continue to fight this fight. I was finally approved for a spinal cord stimulator (SCS) and responded well to the three day trial. Months after the trial I was approved for a permanently implanted SCS. My quality of life was drastically improved and it gave me enough relief most days to continue my daily regime of physical therapy and two hours of pool therapy. We could not decrease any of my medication or I would have a setback. I totally relied on my SCS for pain control because I did not respond to narcotic medications.

I would define the past ten years with full body RSD as mind blowing, traumatic, overwhelming, and most of all changing. I have a great joy for life and all the wonderful opportunities it has to offer. Opportunities are not without work and living with this condition is work, hard work.

In June 2015, things would again change. Even though I continued to live with daily pain, that would also change. Yes, it changed for the worse. I made a simple movement with my neck and felt a horrible pop with lightning pain. I could not raise my head and the pain was intense. My SCS would not touch the pain which was unusual. After weeks of sleeplessness nights, severe pain, and diagnostic tests we found the culprit. I had damaged two of the discs in my neck and therefore, pushed my SCS paddle to the right. Because the paddle had shifted, I lost all coverage for pain on the left side. Now I had to decide what to do and how to treat this. My concerns were so overwhelming about surgery and the risk of exacerbating the RSD. My spine specialist was concerned about the surgery and the risks involved. We did not want to send my body into a state that would push me back to the initial insult. I did not want to EVER go back to where I was ten years ago. I have dedicated my life to rehabilitation and maintaining what I have achieved with all of my therapies.

After lots of research and answers to many prayers, I found a doctor in my home state of Arkansas that was having amazing results with RSD patients. Dr. Katinka van der Merwe is a chiropractor that specializes in Quantum Neurology. Quantum Neurology is all about restoring balance in the Autonomic Nervous System. October 12, 2015, was my first appointment with Dr. Katinka and I was cautiously optimistic. I had never been evaluated nor treated by a chiropractor before. She does not perform manipulations as part of her “Three Punch” system. The treatment modalities and techniques that she uses are unlike any I have ever received. Her technique is painless, non-invasive, and does not require any medications. The day I arrived at her clinic my pain level was 8/10. After my initial evaluation and treatment my pain had dropped to a 4/10. As the weeks and treatments progressed my pain level has remained at a zero the majority of the time.

As most of you are aware RSD has no known cure, but there is hope in hopeless situations. Even with my continued spine issues and the need for surgery on my cervical spine, I have been able to maintain low to no pain with my RSD. I cannot tell you how amazing it is after ten years of chronic pain to actually sleep throughout the night, to not feel like you are burning from within, and to finally be able to plan events in my life.

After completing ten weeks of treatments with Dr. Katinka I have been able to slowly stop all of my RSD prescription medications. My mind feels so much more alert and the ability to communicate without losing your train of thought is amazing. I am forever grateful that Dr. Katinka has such a passion and desire to help those who suffer from this isolating, devastating, life altering condition. Do not accept life as it is if you are suffering, and never give up hope! I encourage you to be your own advocate and get help.

Trying with CRPS: What Do You Do?

Guest Blogger Autumn Strand blogs about how CRPS RSD has changed her life, but how she will never stop trying. By Autumn Strand for the RSDSA blog.

687 days ago I was robbed. Nothing of any monetary value was taken but something much more priceless was: my health.

When you think about the value of things and what they mean to you, I believe that one’s health is often overlooked. That is, until it isn’t anymore.

Before I fell and got RSD/CRPS, I was a college student studying journalism at the University of South Florida and I loved it. It was challenging in a way that took me completely out of my comfort zone, made me think about things with a different outlook and was the most difficult thing I have ever done but I really thrived on it because it was a dream being realized. I have never been what you would call a “social butterfly,” but I had friends and I did things that made me happy. I went to concerts frequently and in the short time I was at my university I saw Elton John, The Lumineers, Imagine Dragons, The Neighbourhood and Luke Bryan in concert (to name a few). Nothing would make me happier than to go to a show and watch live music. This was my drug. I would drive all over Tampa exploring new places and doing new things. I would make the 3 hour drive to Jacksonville to see my family and do fun things with them. The only thing that held me back was my imagination.

Fast forward to now.

I speak a lot about what has been taken from me. All of the things I mentioned above have been taken from me, but also so much more. Pain is now the theme of my life instead of happiness. My drug is no longer music; it is a wide array of things that are supposed to make me feel better. Spoiler alert: they don’t. I couldn’t even consider going to a live music show now because the music would cause me to not only have a tremor, but it would cause severe pain. I cannot drive around anywhere for very long because a paroxysm is sure to hit me at any moment. One of my favorite things used to be driving around with the windows down and the music loud. Now it’s more like driving to the doctor with the music very low. Music and driving weren’t the only things taken from me though. Every single aspect of my health was. I wake up in pain every day and go to bed in pain every night. No matter how many hours of sleep I do or don’t get I am exhausted. I am talking about the hit by a train and then run over by a semi, beaten to death while having the flu kind of exhausted. Every day. I am always nauseous to some degree and live off of ginger ale and saltines. I have to think about every move I make so it will (hopefully) not cause me to have a tremor. I get hot flashes so severe I look like my face and neck have been blistered by the sun. I can’t shake someone’s hand or give a person I love a hug. I can’t bake, write, use a knife, use scissors, knit, go to concerts, sleep, cook a meal or even find a comfortable position to sit or lay down in. Even typing this blog post has caused me an immense amount of agony. The list seems to never end. And bonus… any recounting of my days and/or pain sounds legitimately awful and also a tad pathetic to me which just makes it that much worse.

I often think about this question, when everything causes pain, what do you do? The only thing I can come up with is, you do your best. Some days, I cannot do much more than breathe, but then other days I get dressed and look like an actual human woman instead of an extra on “The Walking Dead.” I try my best to have hope for a future when there will be something that will make me feel better and I will be able to return to school and seek out my dreams. I am optimistic for a life where happiness replaces pain. One day, I will get over the anger of what happened to me and move on to what I can have instead of what I do not. Until then, I will try my best. To quote my all-time favorite heroine Scarlett O’Hara: “After all, tomorrow is another day!”

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

Corey W. Hunter, MD who wrote about DRG stimulation for CRPS By Corey W. Hunter, MD for the RSDSA blog.

Most patients with CRPS can attest to the fact that many of the existing treatments for it are extremely limited.  Recently, Ketamine moved into the spotlight and gave physicians and patients, alike, a great deal of hope that we were getting closer to an answer.  Sadly, the data has been mediocre and insurance coverage remains a problem.  Fortunately, there has been a substantial breakthrough in the understanding of CRPS and how to better treat it.

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

The dorsal root ganglion (DRG) is a small bundle of neurons located just outside the spinal cord.  Previously, the DRG was believed to be a passive structure with no real involvement in creating or maintaining neuropathic pain.  New evidence, however, suggested the DRG is actually responsible for the hyperexcitability of the central nervous system that leads to many of the symptoms associated with CRPS (i.e. allodynia and central sensitization).  Combined with the fact that the DRG is so easily accessible, it made the perfect target for treatment.

Researchers found that by sending small electrical signals to the DRG, pain from things like CRPS could be substantially reduced: thus the birth of DRG Stimulation.  This is actually a variation of a treatment already available called spinal cord stimulation with one major difference: the lead(s) are placed directly over the DRG(s) directing the stimulation solely to the neurons thought to be creating and perpetuating the pain involved in CRPS.

It has been available in other parts of the world for some time now and many of the practitioners already using it have been raving about its unbelievable track record.  Dr. Liong Liem of the Netherlands has arguable more experience with DRG Stimulation than anyone else in the world.  He published some of the first data on it in 2013 where he showed an impressive 56% overall reduction in pain at one-year – this included several types of pain, CRPS being the second most common diagnosis in that particular publication.

Most recently, the results from the U.S. clinical trial called the ACCURATE Study were publicly reported.  The results broke all expectations – at one-year, 74.2% of patients reported greater than 50% pain relief with 1/3 of the total patients treated with DRG Stimulation reporting a staggering 80% or more reduction in pain.  The most common diagnosis in this study was CRPS.

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

The Food & Drug Administration (FDA) just granted approval to DRG Stimulation for use within the U.S. as of February 2016 for the treatment of CRPS.  Currently, the only device capable of DRG Stimulation is called the Axium™ which is available exclusively through St. Jude Medical™. There are a handful of centers across the nation that will be performing this cutting-edge treatment starting April 2016.

Such a treatment could change everything we know about CRPS and how to manage it.  Hopefully, this will be the large step forward so many sufferers have been waiting a lifetime for.

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

Dr. Katinka van der Merwe blogs about new approaches to treating CRPS RSD By Guest Blogger Dr. Katinka van der Merwe of the Spero Clinic

Disclaimer: As a chiropractor, I may not claim to treat specific conditions or diseases. My only objective is to find interference in the Central Nervous System and to remove it, enabling the body to function at its optimum potential once again. I am an independent doctor. Our clinic uses a unique combination of treatments. While these treatments may each individually be taught by various other groups/doctors, we are not affiliated with anyone else.

I often find myself talking to other physicians across the globe, and invariably, they ask me the same question: ‘Why RSD/CRPS? Why in the world would you choose to specialize in such a difficult condition?’ I always answer the same way: ‘How could I not?  I have always maintained that CRPS picked me, I didn’t pick it. What do I mean by that? Let me share a little bit of my history with you.

I grew up in a family where I was taught that the body is a self-healing, self-regulating organism by my chiropractor dad. I was three years old when I decided that I too, wanted to be a chiropractor. I always believed that I would help people and make a difference after graduating. My actual first eight years in practice were very disappointing, however. I found myself treating ‘typical’ chiropractic patients. Neck pain, back pain, headaches and only the occasional complicated case. I felt bogged down, bored. I wanted to live with passion. I wanted to help people get their lives back. I wanted to be able to treat the most hopeless of hopeless. Where were my miracle cases? Just as I was ready to change careers, my life path changed dramatically.

I happened to be at a conference in Florida where I sat in a lecture taught by Dr. David Pascal, DC. Dr. Pascal practices in North Carolina, and works with some of the top U.S. Olympians as well as very complicated neurologic cases. That day, he was talking about helping a paraplegic patient to walk again after years of being confined to a wheelchair. I raised my hand and asked him what happened to that patient. I will never forget the two words that changed my life: “Uh…walking?” Walking?!? I was enthralled, as one of my dear patients, Tommy, had just become a full quadriplegic after a tragic accident. Could I perhaps help Tommy?! I followed Dr. Pascal into an elevator after his lecture and begged him to mentor me. I will never know why, but he agreed to take me under his wing. He told me that I was in for a tough road… and I embraced it.

One of the first techniques I learned centered around restoring balance to the Autonomic (automatic) nervous system, specifically the Vagus nerve (more about this nerve later). It was known to be extremely effective for Fibromyalgia. I was astounded by my results, and wondered what other kind of conditions I could help. Around this time, I met Carlos. Carlos had suffered from full body CRPS for six years, affecting his digestive system. When I met him, he could only eat a few spoons full of chicken broth at a time. This would cause him to curl up in excruciating pain for hours after each meal. Carlos was white as a sheet, and utterly without hope. His pain was carved into his face for the world to see. He came in with his wife. She told me that she was afraid that Carlos would take his own life if they could not find relief soon. She had convinced him to try just one more doctor. With them that day was their nine- month old baby, Sean. I remember looking at that little boy and trying to imagine his life without his father in it to see him grow up. Carlos finally looked up and said: ”You can’t help me. No one can help me. I am here because my wife asked me to come.”

Here was my moment.  I felt the pressure of the world on my shoulders. What if I couldn’t help this man? It was my dream to treat patients like him, and when he finally arrived, I was petrified. My dad gave me a little pep talk in the back. “You asked for this. Patients will not come to your door step unless you could make a difference. It is not your responsibility to heal him, it is your responsibility to do your best. Now, get out there and do your thing!” And so I did. To my astonishment, his pain responded beautifully, dropping down dramatically. Carlos left my office that day in zero pain. He went straight to a Luby’s cafeteria (fine dining here in the South) and consumed his first full meal in five years. He came back the next day a changed man. His color was back, and also what I refer to as his ‘life spark.’ Twelve weeks later Carlos was completely pain- free. Today, almost five years later, he is still pain- free and working as a pastor. He now travels all over the world and has since faced several physical challenges, such as gallbladder surgery, with no sign of the CRPS rearing its ugly head again. Carlos considers himself to be in full remission these days. He always says that I saved his life, but honesty, Carlos saved mine. I was hooked. (You can watch Carlos’s original YouTube video here, https://youtu.be/tC_JyDfvexM right after he started treatment. You can watch his most recent video here https://youtu.be/pYE0aW1cTh8  that was recorded   three years after he completed treatment).

From that day on, I became obsessed with helping people who suffers from this horrible, life­ robbing condition. I hunted down doctors and techniques from all over the world, determined to figure out how to beat this condition. If I heard that someone was having success treating CRPS, I wanted to know what they knew. Along the way, I got to witness some incredible recoveries. I was amazed at the results my staff and I were getting, yet frustrated that so few knew about it. I soon realized that another book was in my future. I could not sit on the information I now had in my hands, not sharing it. While researching my book, I realized that CRPS has touched many other doctors in a similar way. You cannot treat this condition and witness the path of destruction that it cuts across people’s lives, without becoming singularly obsessed with helping people who suffer from it recover. I am hardly the first physician to ever develop a passion to beat this thing. Early on my new path, a doctor once told me that seeing miracles, and being part of those miracles, is a very addictive thing. I can only agree with that statement wholeheartedly.

What makes our treatment different?

While learning how to treat the neurologic symptoms of CRPS, my basic holistic training and upbringing has come in very handy. That training has taught me that, unlike the mechanistic approach (that which most medical doctors follow today), the body is not like an engine. What I mean by that is that you cannot just treat different parts, forgetting that every part is connected to every other part. The body is incredibly intelligent, far above our understanding as human beings. Just think about all the trillions of functions happening in your body every second of every day, things we cannot even comprehend. Your immune system is fighting off invaders and cancer cells every day. Trillions of cells are being repaired or replaced, hormones are being produced, vitamins are being gathered from the food you eat and delivered to the cells that need them. All of this without a second thought from you. We readily expect our body to do these things every day. Yet, we just accept that somehow, our bodies become broken beyond repair, not smart enough to beat ‘incurable’ conditions. We accept that this power now rests in doctors’ hands, and that we will find ‘magic’ in some form of surgery, device or medication. Something outside of yourself.

All the scientists in the world cannot even grow a hair. Yet, our body does that every day. The intelligence that runs this all day doesn’t just desert some of us one day, causing us to suffer. So, how do we get sick then? Something interferes with the way our bodies are supposed to run and heal from the inside out. In my experience, and always in the case of CRPS, this interference typically happens in the Central Nervous System.

The Central Nervous System (CNS) is the system that runs everything in your body. It controls movement, function, your immune system, and pain. It also controls healing. The Autonomic Nervous System (ANS) is a subsystem of the CNS. It is the part of your brain that runs everything automatically, without you having to think about it. It is divided into the Sympathetic (fight or flight) Nervous system (SNS), and the Parasympathetic (rest or digest) nervous system (PNS). The SNS is responsible for saving our lives when we are being attacked. It is vital, but not overly concerned with healing, sexual function, digesting food, or relaxing. The PNS is. The one thing every CRPS patient has in common is that they are stuck in Sympathetic overdrive, meaning, instead of their nervous system being nicely balanced between these two states, they are stuck in Sympathetic overdrive. This often happens long before they ever develop CRPS.

The Vagus Nerve (VN) is one of twelve pairs of Cranial Nerves (CN) that run directly from the brain to the body, instead of from the spinal cord. The VN is the tenth cranial nerve and is the main Parasympathetic cranial nerve. The Vagus Nerve (meaning “wandering nerve”) has multiple branches that diverge from two thick stems rooted in the cerebellum and brainstem that wander to the lowest viscera of your abdomen, also connecting to your heart and most major organs along the way, such as the lungs. The VN supplies motor Parasympathetic fibers to ALL the organs except the adrenal glands, from the neck down to the transverse colon. The VN is responsible for many different tasks, including (but not limited to): heart rate, digestion, sweating, speech, coughing, fainting, and vomiting, to name but a few. Remember, people who suffer from CRPS also suffer from Sympathetic dominance (the schoolyard bully), causing the Parasympathetic nervous system to be suppressed and to shut down. This means that people who suffer from CRPS also suffer, by definition, from an underactive VN.

An underactive VN may be a result of an injury to your upper cervical spine (neck) directly, such as an old whiplash injury, a tailbone injury (affecting the neck indirectly) or as a result of an abnormally functioning ANS. Either way, malfunctioning of the nervous system is involved (by definition) when the Vagus Nerve is messed up. This will cause inflammation in one part (or all the parts) of the body. Basically, inflammation causes your nerves to be ‘on fire.’ What does the Vagus nerve have to do with inflammation? A lot, as you may guess.

Dr. Kevin Tracey, a neurosurgeon in New York, has done extensive research regarding this topic. Dr. Tracey set out to prove his hypothesis that the brain might be using the nervous system, and more specifically, the Vagus Nerve, to tell the spleen to switch off inflammation everywhere in the body. He derived at this idea before no one .has ever, after injecting an anti- inflammatory drug into a rat’s brain in an effort to minimize the effects of a stroke. To his astonishment, he found that this action not only turned off inflammation in the brain, but turned off inflammation in the entire body.

If Dr. Tracey was right, inflammation in body tissues was being directly regulated by the brain. This was an extraordinary idea. Before, no one has ever really explored whether the cells of the immune system were being directly controlled by the Vagus Nerve. Now, it was emerging that it was entirely possible that the brain, via the Vagus Nerve, was the force that governed it all.

His first study involved cutting the Vagus Nerve in rats. When Tracey and his team injected the anti-inflammatory drug into the brain, the drug no longer had an effect on inflammation in the rest of the body. Viola! The second test was to somehow stimulate the nerve without any drug in the system. “Because the Vagus Nerve, like all nerves, communicates information through electrical signals, it meant that we should be able to replicate the experiment by putting a nerve stimulator on the Vagus Nerve in the brainstem to block inflammation in the spleen,” he explained.  “That’s what we did and that was the breakthrough experiment.”1

The Vagus Nerve works as a two-way highway, passing electrochemical signals between the organs and the brain. In chronic inflammatory disease, Tracey figured out, messages from the brain telling the spleen to switch off production of a particular inflammatory protein, tumor necrosis factor (TNF), weren’t going through. Low Vagal tone (or function) causes inflammation in the body. High Vagal tone (or function) causes the reversal of inflammation.

Good communication between the immune system and the brain is therefore vital for controlling inflammation. The inflammatory reflex is a mechanism in which afferent (body to brain) VN signaling, activated by cytokines or pathogens, is functionally associated with efferent VN -mediated output to regulate pro-inflammatory cytokine production and inflammation. VN stimulation suppresses local and serum pro-inflammatory cytokine levels 2. Cytokines are tiny proteins, acting as messengers. They can tum off or turn on inflammation anywhere in the body.

Of course, the problem in the body of a CRPS patients is that the VN is anything but communicating witl1 the body, and vice versa. It is much more like a traffic- clogged freeway, where few signals are making it through in either direction. Is it any wonder then that CRPS patients are literally burning alive from the inside?

HOW CHRONIC INFLAMMATION CAUSES PAIN IN CRPS

Remember cytokines? It has been shown that certain cytokines are involved in not only the initiation but also the persistence of pathologic (abnormal) pain by directly activating nociceptive sensory neurons (nocireceptors are the nerves which sense and respond  to parts of the body which are damaged). A good example of nociceptive pain is the pain experienced after burning. Certain inflammatory cytokines are also involved in nerve injury (and inflammation-induced) central sensitization.

If you suffer from CRPS, you should care a lot about central sensitization. It is based on the principle that basically, pain itself may change the way the central nervous system works (meaning the brain and spinal cord), causing more pain, and causing the patient to become hypersensitive with less provocation. Sensitized patients are not only sensitive to things that would cause normal people pain, but also become sensitive to things that shouldn’t hurt. Sound familiar? Any kind of noxious (‘bad’) stimuli can trigger this reaction. Anything that hurts the skin, muscles, or organs. This pain can become constant and stick around even without provocation.

Certain inflammatory cytokines in dorsal root ganglion (or DRG), a collection of afferent sensory nerves that exists just outside of the spinal cord, injured nerves or skin, are known to be associated with specific pain behaviors and with the abnormal spontaneous activity from injured nerve fibers or neurons. Following a peripheral nerve injury, immune cells that gather around the injured nerve(s) secrete cytokines. Localized inflammatory irritation of the dorsal root ganglion (DRG) not only increases pro-inflammatory cytokines but also decreases anti-inflammatory cytokines. There is abundant evidence that certain pro-inflammatory cytokines ate involved in the process of pathological (abnormal) pain 3.  It is like a wildfire, feeding upon itself to then start burning out of control. In a nutshell, it causes the symptoms of CRPS.

In addition, a malfunctioning VN will also cause immune system problems, digestive issues (typically treated as a separate problem in CRPS patients), sleeping problems, and a lack of sexual desire.

Our treatment focuses on restoring immediate normal flow, tone and function to the VN. Our treatment has no side effects. If our treatment can help you, we typically will notice a dramatic decrease in pain in the first week, if not the first day. Unlike most treatments out there today, we do not aim to disrupt or numb the pain signals. We feel that that approach is invasive and temporary, like a band aid. While we cannot legally claim to heal CRPS, we do aim to uncover abnormalities in the CNS and restore balance to the Nervous System. The healing occurs from the inside out.

Why does the VN malfunction? It can happen for several reasons, or usually a combination of factors. I like to refer to CRPS as not caused by one single factor, but rather a combination of factors, or ‘the perfect storm’. These factors may include (as previously mentioned), neck and/or tailbone injuries, generic factors, toxicity, inflammation, viral or bacterial infections, emotional stress, and many more.

Our ‘Three Punch’ System

Through the years, we have perfected our treatment regimen into something I now refer to as our ‘Three Punch’ system. As in, three punches and you ate out. We first use a technique that gently removes any pressure from the VN, instantly restoring function to that nerve and causing it to shut down inflammation in the nerves. What does this mean to you? An immediate decrease in pain. This procedure has to be repeated very often over an initial ten week treatment period. This is because the ligaments in your upper cervical spine may be used to the old ‘wrong’ position. There may also be scarring in the spine and/ or soft tissues.  All of these structures have to become used to their new corrected position. Think of braces on your teeth. It won’t work if you only wear it for one day.

Second, we treat the body with Frequency Specific Microcurrent (FSM). What is Microcurrent?  It is a very small current, too small to be detected by the sensory nerves. Therefore, it is not painful. It is the same kind of current your body naturally produces in each cell. It is also FDA approved. At least one study has shown that microcurrent increased ATP production in rat skin 500%. ATP is the chemical that the body uses for energy in order to perform all its functions, including healing. The current also increased amino acid transport into the cells by 70%, as well as waste product removal4•

Carolyn McMakin, DC is one of my favorite mentors. She and George Douglas DC developed a system whereby we use specific frequencies clinically, using the FSM device, effective in treating different conditions, including CRPS. Doctor McMakin used this system to treat her own son successfully for CRPS. When combined with our two other systems, we find that this treatment is an incredibly effective part of the treatment of the neurologic symptoms of CRPS.

Lastly, we use a system called Quantum Neurology, developed by Dr. George Gonzalez, DC. This system was designed to rehabilitate every aspect of the Nervous System. Dr. Gonzalez developed this system in order to treat his wife, Lori, after she suffered a spinal cord injury. After seeing countless famous doctors all over the country, Dr. Gonzalez realized that no single system existed that was designed to rehabilitate the nervous system. His work was based upon the premise that if the body suffers from a chronic injury, the brain will eventually start ‘ignoring’ this injury. The reason for this is that the injury will act as an ‘energy vampire’, robbing the rest of the body of energy on a daily basis in order to rush the stolen energy to the sight of the chronic injury, much like a slow ‘energy leak’.

In order to heal ‘glitches’ in the nervous system, we must first ‘show’ the brain (or remind it) that the nervous system is injured, and then assist the brain in healing the injury. We use this system to very gently heal the abnormal sensory nerves (causing you to be in pain when exposed to heat, cold, deep pressure, pain, light pressure, vibration, and circumferential pressure, such as tight clothes). This is not the same as the physical therapy sensory rehabilitation that most CRPS patients are used to, that focuses on continuing to expose the sensory nerves to a specific sensory stimulation, hoping to cause a ‘numbing down’ effect after a while, almost like a callous. Instead, our system consists of the premise that the injury is pointed out to the brain, and then gently assisted in fixing the ‘glitch’, often instantly, although re-injury may quickly happen in the beginning. The nervous system has to build up stamina and strength, at which point the corrections become permanent.

As stated previously, our system works best when all components mentioned above are used together. There are no side effects to our treatment. Unfortunately, at this time, we are the only clinic in the US to apply the ‘three punch’ system. That means that you have to travel to Arkansas for ten weeks in order to get treated in our clinic.

 

The ‘Secret Sauce”

One thing I haven’t mentioned yet is what I refer to as ‘the secret sauce’. What do I mean by this? The secret ingredient to every patient I have ever watched recover is spirit. It takes tremendous courage to keep looking for ways to recover, regardless of how many times you have been disappointed in the past. It takes grit! I often find myself across from a new patient, holding their two- inch thick medical file, filled with medical records. Each one of those records represents a time when you sat across from a doctor, looking for answers, looking for help, hoping that this time will give you back your life again. My heart goes out to you, it truly does. Yet, you cannot give up. You cannot stop looking for ways to aid your body in recovering, no matter how many times you have been disappointed.

The other side of this coin is that you need a doctor who, above all else, truly cares about you. Doctors are not gods. They are not power figures who may not be questioned. We work for you. Like any good employee, if we are to help you, we have to listen to you and care about you. I throw my passion into every single case that I treat. Every patient represents a goal to me. When listening to my patients, I don’t just want to hear about their pain, I want to know what CRPS took away from them. What is it that they miss? Is it to walk their beloved dog? To travel with their husband?

To work in the job they love? To enjoy their grandchildren? These are the things I want them to get back.

This is the reason I have a fire burning in my heart, and passion filling my days. It is not just about beating the monster… it’s about being charged and blessed with the responsibility to help guide people  just like you back to life, instead of merely surviving and living ‘around’ your pain. You deserve to live with passion again. You deserve to be happy. You deserve to be alive again with joy.

References

1 K. Tracey. The inflammatory Reflex. Nature, 2002.

2  L. Borovikova. Vagus nerve stimulation attenuates the systemic inflammatory response to endotoxin.  Nature, 2000.

3J. Zhang, J. Cytokines, Inflammation and Pain. International Anesthesiology Clinics, 2007.

4N. Cheng. The effects of electric currents on ATP production, protein synthesis and membrane transport in rat skin. Clinical Orthopedics, 1982.

Dr. Katinka van der Merwe grew up in South Africa before immigrating to the United States when she was twenty. She was formally trained as a chiropractor.  She received her degree in 1999 from Parker College of Chiropractic in Dallas, TX. Dr. Katinka has since expanded her coursework in Neurology, Biological Medicine, and Junctional neurology, focusing on helping complicated and ‘hopeless’ neurologic cases, using cutting edge techniques that focus on restoring proper junction and balance to the Central Nervous System.  Dr. Katinka is qualified as a Quantum Neurologist and has also studied under Dr. Thomas Rau, MD, clinical director of the world famous Paracelsus clinic in Switzerland. Dr. Katinka is the author of ‘Taming the Beast: A Guide to Conquering Fibromyalgia”; available on Amazon, as well as the soon to be released “Putting Out the Fire: New Hope for RSD/ CRPS.’ Dr. Katinka was the recipient of the prestigious ‘Rising Star’ award in Tampa, Florida in 2012, as well as several awards for her ongoing work with RSD/ CRPS. Dr. Katinka lectures extensively to fellow physicians as well as the public. She practices in Northwest Arkansas where she lives with her husband and four children.

CRPS Wedding Chronicles: Venue Hunting

CRPS wedding chronicles. Sammie and Aaron are preparing for their wedding. Sammie has CRPS. This week, she details touring venues for the weddingBy Samantha Barrett, Special Events Coordinator

Last week, you were able to read about a bit of my engagement story. I got engaged in October and we instantly started planning (hey, I’m an event coordinator by trade, it was only natural). We signed up for all of the wedding planning websites, bought a giant wedding planning binder, and started keeping a wedding planning idea notebook. So now it’s time for the next story in the CRPS Wedding Chronicles!

Since we’ve been together for almost nine years, we’ve talked about some of our wedding details before. Our colors are purple and silver, our theme is Beauty and the Beast, our bridal party was selected instantly, and our potential vendor list was easily made. Just a quick fun fact for you, our wedding is Beauty and the Beast themed because that has been our movie for years. People used to joke and call us Beauty and the Beast because of our personas, our looks, and some likely unknown factors. But my Beast is the reformed Beast.

We picked a date for our wedding and realized that it’s a rather touristy time. We live by Cape Cod and have a summer wedding planned, specifically for the weekend right before the 4th of July. We had to dive right into looking into the venues and seeing if they would work for us. I sent a few emails and made a few calls to our top four locations. After speaking with the locations, I instantly cut two locations. (TIP: If the people start to give you an issue as soon as you call, don’t waste your time with them). So, we went to tour one of the venues. We brought my mom along with us, just as a third set of eyes. This location had great meaning to me, so my expectations were unfairly high.

We drove up and I instantly got butterflies. The building was under new management, which made me nervous. I had only talked to the woman via email, but she seemed pleasant enough. I wasn’t thinking to ask what entrance to use for this massive building, but naturally I went to the wrong entrance to start it all off. The main entrance was on the opposite side of the building, up a hill a bit. Since I had two people with me, we walked up the hill to the main entrance. It was unlocked (thank goodness) and the new manager was there. She looked at me and instantly felt awful for not clarifying what entrance to use. Sometimes, I forget that most “twentysomethings” don’t use canes or wheelchairs on a daily basis, so I get surprised when others get surprised. Oops! Of course, there were no hard feelings and we started our tour.

We took the elevator upstairs to where the ceremony and cocktail hour would be. The building had recently had some renovations done and the room looked gorgeous. I went to the middle of the room and turned around in a circle, picturing everything. It was perfect. There was a chandelier that reminded me of Beauty and the Beast, there were sconces that looked like candelabras like Lumiere from Beauty and the Beast, the windows let in the perfect amount of light while maintaining privacy, and there was just so much potential. My mom was holding my list of questions and started going down the list. We have a really large guest list, so we wanted to make sure the room would hold everyone and still be handicap accessible. The manager really listened to all of our concerns and offered up suggestions for different things we could do in terms of setting up the room, grand entrances, and all of that jazz. So far, so good. We then took the elevator downstairs to the main room. I instantly teared up when we stepped into that room.

Flashback to little Sammie. About a year after I was diagnosed with CRPS, I started my own series of fundraising/awareness events called “Rock for RSD.” I organized concerts in this massive venue in my

Rock for RSD
A collage from the first Rock for RSD

hometown because I was frustrated that people didn’t know what CRPS/RSD was. I organized every element of these concerts-

sponsorships, bands, raffles, advertising and public relations, ticket sales, and everything else. I was only 14 when I started. This was how I started my connection with RSDSA. My concerts were extremely successful events. I went on to have one each year until I graduated high school. This entertainment venue happened to be the place that I was touring for the wedding. Funny how things come full circle, right?

Back to the story! We mapped out a bit of the floor plan and thought about décor. What’s fantastic about this space is it can be a blank canvas for us. We’re both relatively creative people (Aaron is an artist, I just get ideas), so turning this space into exactly what we want should be fun! Even better, once we figured out all of that, we were brought into the green room. More memories flooded my brain when we went back there. I had all my meetings with my bands there (and yelled at a few grown men for trying to break contract). I was very familiar with the space. We were told that we would be able to use that the full day. So if I have a lot of pain or my POTS starts acting up, I can go back in there and relax without being right in the spotlight. All I have to do is go through the doors. It’s perfect!

We discussed some figures, my history with the hall (the manager had heard of my concerts and wanted to get me in to plan another one), and more of our vision. We then said goodbye and left the hall. When we got into the parking lot, we all stopped to chat. We were so impressed with what could be done, how accommodating the venue would be, and by the manager. We can bring in our own caterers, DJs, cake bakers, whatever we want. After calculating the minimum price from the other location we thought about touring, we decided it wasn’t even worth it to tour. We picked our location!

So, if you’re planning a wedding and are in the venue hunting stage, here are my tips:

  • Tour more than one location. (I happened to have already experienced events in the locations I had wanted).
  • Have a list of questions that you want answered with you. They may answer these questions before you ask them, but if there is something that is important to you, make sure you ask about it!
  • Bring trusted people with you. I’d suggest your fiancé/fiancée, but maybe consider bringing a member of your bridal party or a family member that may think of things that slip your mind (excitement happens).
  • Check for stairs, hills, gravel walkways, and other obstacles. A venue may say they are handicap accessible, but it may be difficult to navigate certain areas. The place you want your ceremony/reception may not have a realistically handicap accessible route.
  • If there is an area that you may not be able to get to, see if they will offer you some kind of accommodation. They may have a portable ramp, an alternate route that you don’t see, or another suggestion.
  • Bring some images that act as your inspiration for the big day. Do you want a rustic wedding with bales of hay as the seating? Bring that in as a picture. Bringing in a few images will help the venue manager see what you want and will help you determine if that is realistic at that location.
  • Consider your creativity. Some venues are beautiful without needing anything else, whereas others need some decor help. If you don’t want to spend extra time/money on decor, pick a location that is already picture perfect. If you want to utilize your Pinterest DIY pins, pick somewhere that is more of a blank slate.
  • See if there is a quiet area that you could escape to in case you get a surge of pain. Stress can impact your pain levels. At some point, you may want to just get away from the vibrations of the music and all of the people (no, don’t use this to escape your in-laws. You’re stuck with them now).
  • Beware of hidden fees. They are everywhere. Some locations, if you go over your time by 2 minutes, they’ll charge you for an hour extra for the room fee plus the fee of staff. Make sure everything in the contract is written out clearly. Bring up any concerns you may have.
  • See if the venue requires you to use their vendors. Some venues have bakeries, caterers, and DJs that you must use. If you have your heart set on a certain bakery for your cake, that may be a a deal breaker.
  • Go with your gut. If you are getting negative vibes from the coordinator, manager, or other staff member that you will be in direct contact with, don’t bother with the place. You don’t want that negative energy to bring you or your loved ones down.

That’s it for this issue of the CRPS Wedding Chronicles. Next time, join me as I go dress shopping for the first time.

CRPS Wedding Chronicles – The Engagement

Sammie and Aaron get engaged with zebra print cane in hand. CRPS engagement story By Samantha Barrett, Special Events Coordinator

In 2015, I had one of my worst CRPS flare ups, thanks to a dislocation from EDS (Ehlers-Danlos Syndrome). It was scary to me because it was the one limb I had not experienced pain in. But, it happened and I was in a wheelchair. I fought my way out of the wheelchair and back to my zebra print cane after a few months. I was ultimately used to flare ups at this point, as I was nine years into my diagnosis with CRPS.

What did I do when I was able to move again? I went to a renaissance fair with my boyfriend and a group of friends. I had been looking forward to this fair for over a year, but I started the day off by forgetting my wallet at home… Spectacular, right? I blame pain brain. I knew I could not make it through a full day, between my pain and my mood, but I decided to make the most of it. And how can you not laugh when everyone you are with is in costume, which makes your boyfriend buy a kilt to have something to wear. But he kept running off with the males of the group while I went around the park with my friend. (Note: Looking back, I realize this was very uncharacteristic of him, especially in crowds where he likes to protect me from anyone that may bump into me). We met up for lunch and he brought me “Love On a Stick” that they sell at the fair (a purple rose). And then we went our separate ways again. The biggest event at the fair is the jousting tournament between the knights to try to win the princess over. That was the end goal for us. When it got to be an hour before the tournament, we all met up. We wanted to get a good place to view the event, so we headed over there early. My arm had been hurting from carrying my coat in the crook of my arm all day, so he took my coat. But then he took my water, my rose, my phone, and everything else from my hands and passed it off to our friends. I was quite embarrassed because I thought I was starting to look like a privileged princess myself. But then I was turned around to see him kneeling on the ground, and he was not tying his shoes.

After eight and a half years of dating, four years of college, three new diagnosis (for me), and already a lifetime of memories, my best friend proposed to me. You can even see my zebra print cane in all of the pictures that people took from the proposal. That face is pure shock. I had absolutely no idea. I think the number one reason I really did not expect it is because there were so many people around and Aaron (my fiancé) is extremely shy. We are middle school sweethearts that were set on each other from the start. Our friends have called us mom and dad since high school. Now that we are engaged, that means a wedding has to be planned! Do not worry everyone; I have only been planning my wedding for seven years. It should not be that hard… right? Okay, stop right there. I can hear you laughing through the computer!

I consider myself very lucky. I had been diagnosed only a few months before Aaron and I started dating. He was petrified by CRPS at first. But then he sat down and researched it with one of the members of his family so they would know what to expect. He went from being a boy with a blue mohawk to a man on a mission to help me along this ride that we call life. I was told by various people for a very long time that he would get tired of loving a disabled person and would leave before even considering marriage. It was discouraging to say the least. But I knew he was different than that. And he continues to prove to me every day that he is different. He has even started to educate people about CRPS on his own. You may even see some of his graphic designs at upcoming RSDSA events. All of this made me realize people can tell you your life will be a certain way, but that doesn’t mean it will be. I was told I’d never walk again when I was 13- I was able to walk again. I was told I’d never get through college- I graduated summa cum laude as a double major. I was told I’d never get married- that’s about to happen now. I realize now that your life is not to be dictated by others. You are so much more than your CRPS. You may have to try a few times and you may need to do things differently than some other people, but you can do virtually anything.

Let me entertain you for the next year and a half as I plan my wedding. You will get a firsthand account of all of my trials, triumphs, and stumbles along the way. I know that having CRPS will require me to think of some things that other brides do not have to consider. At this point, it is second nature for me though. From finding a wedding dress that does not hurt my skin, to finding a venue that has options other than stairs (and everything in between), you will get access to what is happening in my wedding planning life. Balancing CRPS, a job, and a wedding is not necessarily a cake walk, but I am going to make the most of it! (Oh, I forgot about the cake testing. Yum).

Our bridal party has been selected (a total of 16 about people). Right now, I am working on guest lists. Our guest list went from “Let’s keep it around 150” to “Mom just added more people, so we are at 220.” Oh boy. Wish me luck! Stay tuned for the next CRPS Wedding Chronicles story!

– The Future Mrs. Anderson

Aaron and Sammie at the Achilles Finish Line walking to raise awareness for CRPS
Aaron and I at the Achilles Finish Line in 2015

How My CRPS Pain Plot Twist Changed My Life

Meme stating "If something goes wrong in your life, just yell 'plot twist' and move on" as it applies to pain and CRPS

By Guest Blogger Audrey Johns

I came across this meme on Facebook this morning and some emotions (both good and bad) came flooding back from yesterday. I have a disease called CRPS, a painful nerve disease that makes everyday a new struggle… heck I’m writing this to you from my bed, atop my 4 inch memory foam mattress pad, the only place I can be when in extreme pain.

Yesterday I was working with a new pilates instructor, I was exclaiming how wonderful it was to feel pain from exercising, not CRPS pain but pain that was positive and that I knew was making me stronger. She did not understand, I had given her some guidelines before we started like not to touch my left leg (the pain from someone touching my leg can result in being laid up in bed for a few days) but she still had questions after my telling her how much I enjoyed having positive pain for the first time that week.

As I laid on my back on the reformer machine feeling the pull of the straps I felt a tear roll down my face… I pulled it off as sweat but I also went on to explain what CRPS was and how it has affected my life.

I am a very positive person (some may call Pollyanna optimism) but I told her briefly about the disease and then immediately (and even a little involuntarily) went into how it has changed my life for the better. I explained that I used to be in property management and now I am an author because of my CRPS, I explained to her that in my boredom after being diagnosed I started my blog, at first just typing one handed, eventually getting hired by newspapers to write columns and now publishing a cookbook with a NYC publishing house (check out my new cookbook here). I told her that I would never have the wonderful and fulfilling life I have now without the extreme burden of my disease.

Now I know what you’re thinking, that I started talking about the positives to ease her uncomfortableness, people hate hearing you are in pain and if you can give them a positive, it makes them less uncomfortable… but this was also for me, I can’t dwell on just the negative. For me, dwelling on all the pain and hell I go through everyday makes me depressed and only makes my CRPS worse, but if I can find something positive to focus on I can get through.

To be very clear, I wish I was free of this disease, but I am grateful to be the person it has turned me into. Defiant and strong spirited even on my worst days, the defiance is growing everyday, and especially today as the glorious soreness of exercise spreads over my body. It feels amazing to be in pain because I kicked ass yesterday, not because my body is kicking me down.

So, back to the meme I found that prompted this article, something went very wrong in my life, I have CRPS in over half of my body, but I can choose how to react to it. I can use this “plot change” to better my character and even parts of my life. I can choose to make my life better, to find things I CAN do (like Pilates!) and I can be a warrior everyday, even if that means I am Sargent Pollyanna!

Click here to purchase Audrey’s new book on Amazon!

Audrey Johns poses with her new cookbook, which you can buy on Amazon now. She blogged about how pain and CRPS positively impacted her life.

5 Do’s and Don’ts When It Comes to People with CRPS

CRPS Do's and Don'ts are particularly useful for friends/family of those living with CRPS/RSD
Anna with a friend that follows the Do’s and Don’ts

By Guest Blogger Anna Evenosky

So often we find ourselves in situations where people are trying their best to help us when in reality they very well may be hurting us. I can see how being a loved one of someone with CRPS can be challenging in more ways than one. You may find yourself not knowing what we want from you. I hope these 5 Do’s and Don’t give you more insight as to how you can help and comfort us.

DO: Ask us how we are doing.

Our CRPS is something that is always on our mind and we appreciate knowing that somebody is thinking about us. You don’t need to worry about bringing up a sensitive topic because, chances are, we have already been asked what you are wondering. I know you may feel uncomfortable approaching the situation, but with it going unspoken about it is just as uncomfortable! You asking us how we are doing and if anything is new shows us that you care and gives us somebody to talk to.

DON’T: Ignore and fail to acknowledge that we are going through a hard time.

We know you may feel sorry and not know what to say or how to handle the situation. You not acknowledging the situation makes us feel hurt and abandoned. It makes us wonder how we are supposed to handle the situation on our own without our loved ones support.

DO: Listen to not only the happy parts of our illness, but the sad parts too.

Use the stories you hear from us as knowledge that you can then share with others. Awareness is key; knowing that you are helping spread awareness is one of the most comforting things you can do for us.

DON’T: Disregard the “ugly” parts of our illness and only spread the happy parts.

This is hurting us in so many ways. It stinks but these days people need to see the bad in order to support you and have sympathy (although sympathy isn’t what we are after). It is so often that CRPS gets brushed aside and people don’t believe how much we suffer. This is because you are only aware of the person who benefited from a treatment, the success stories, or the smile that we always have on our faces. People are not aware of the person who is bed ridden, has lost all function, or breaks down more times than one can count in a day.

DO: Offer us your help when we are not feeling well.

Even though there is nothing you can do for us that will cure us sometimes just knowing your willing to help is enough to put a smile back on our face. Please know that any way you help is benefiting us, no matter how big or small.

DON’T: Say “I’m sorry” and give up on helping us because you think it is useless.

When we text you saying we don’t feel well, take that as an opportunity to help us or take it as a call for help. Sometimes just having your company is enough to put a smile on our faces. Although when you give up on helping us and stop offering us help it makes us feel as if we should give up on feeling better.

DO: Offer to come over and lay in bed with us or make us something to eat when we unexpectedly cancel plans.

So often, our needing to cancel last minute is seen as not wanting to spend time with you. In reality, we are heart broken that we can’t get out and do something fun with you. We would still LOVE to have your company even if it means you sitting next to us as we doze in and out of sleep.

DON’T: Accuse us of not wanting to hang out with you when we cancel unexpectedly.

We are already upset enough that we can’t see you. When we see that you are annoyed or disappointed with us it makes us fall into a deeper state of depression. Please know we really want to spend time with you and that we are in a constant fight with our body!!!

DO: Tell us that you can’t understand completely but are always there for us and will do anything to understand better.

It is ok to tell us you can’t relate. That doesn’t make us feel sorry for ourselves, it actually makes us happy since it shows that you believe that what we are going through is very hard. We love to know and it’s comforting to know that you will do anything it takes to understand or even get a glimpse of what our life is like.

DON’T: Tell us it could be worse and not support us.

You have no idea what we are going through and are not in a position to tell us that it can be worse. That is the most disheartening thing you could tell us. It shows us that you don’t believe how much we suffer. Please remember that different hardships come with different illnesses and no two are comparable. This comment is not comforting to us.

Next time you find yourself in a situation where you are not sure what to say or do, please remember these 5 things. These can make a huge difference when it comes to our relationship with you and our overall well-being. We hope this helps explain everything a bit better and gives you a glimpse of our side of things. Thank you for supporting us and if you are a loved one reading this- thank you for making an effort at helping us.

Please consider making a donation to RSDSA today!

Living Beyond Your Illness – Getting By With CRPS

Hands in for CRPS/RSD AwarenessBy Guest Blogger Suzanne Stewart. Originally Featured on her Tears of Truth blog.

Hello Luvs,

If you haven’t read any of my blog before, you won’t know that I always start out my blog with “Hello Luvs”.  I had meant to write this long ago, but time gets away from all of us, so today the phone was on mute and the kitty was lying in her spot with me in the same room and it seemed a good time to write about this.  We can all get down and sad sometimes, even depressed.  I mean, having a chronic illness, or a list of chronic pain illnesses can get pretty monotonous to say the least! If you let yourself get in a “rut”, then you will panic and be sad and “down” and things only get worse from there. You can try to join a support group or make friends that share some of your illnesses. But you really must be careful in that as well. All things are good in moderation, is what someone used to say, right? I cannot for the life of me, remember who said that originally, but I know my mother said it to me many times.  She said “we need water to survive, but even too much water can kill you”. She was right.  Sometimes when we join groups and make friends who have the same or similar issues or illnesses as we have, things can get a bit “strange” at times. It may be a good thing but you just need to be careful as some people try to compare themselves to each other, see who is the sicker one, who is worse or better? Things like that! It is sad but true. The more and more that I work with groups for the past 7 years and with awareness events, projects and people in pain, like myself, I have seem it all.  Sometimes the people do the things they do to make themselves feel better, and that’s not all bad either! It’s great to make yourself feel better by doing something to help others. But when you do it for accolades, applause, gifts, patting yourself on the back or for someone patting you on the back, then it becomes a bad “game” of people hurting people instead of people helping people.

In my life, I first got approved for SSDI in 1998, due to CKDII and PTSD. They had called us the day before my scheduled Dr’s appointment with the SSDI office Dr’s, I’m guessing? They told my husband that they received all of the information from my team of Dr’s. They told him that “she doesn’t need to come tomorrow to see our physicians. She’s been through enough. After reading her history and stories from several of her physicians and Psychologist; we’ve decided that we don’t want to put her through having to tell her story even one more time! She is approved”! I was crying, I was so happy. The reason being, that when I have to go to a new Dr or a “scary” situation (due to the PTSD), I do get stomach aches and diarrhea and even vomiting!  I didn’t want to feel “judged” or ridiculed or afraid again. So that one thing, I did not have to do and I was so greatful for the “gift” of not having to be “sick” through all of the poking, prodding and questions.

As time went on, I ended up getting into a motor vehicle accident, just before I was thinking of trying to return to work maybe even part time? But the MVA just took that notion and threw it out the window!  I will make a very long story, very short. Because this writing is about getting “BEYOND” the illness and pain. I will just say that I suffered and still do suffer from many issues and injuries following that MVA, when a man ran through a red light and not only totaled our car but my body and my brain as well. You might say that my brain “seems great”. I am writing to you and all seems just fine! Not so much! I have suffered since that time from the aftermath of 8 surgeries, screws in my shoulders, both knees damaged, 2 pacemakers, a stroke or CVA and  a heart attack in ’05. I acquired an auto immune disease called “Combined Immune Deficiency Disease”, along with a Neuro-autoimmune disease called “CRPS” (sometimes called “RSD) and also known as “Complex Regional Pain Syndrome”. Mine went systemic or “full body” following my 2nd pacemaker surgery in 2013. The wonderful Neuro-Cardiologist at Univ. of Toledo Med Ctr. tried with all of his might to head off a full body attack of the CRPS inside of me. He did a “internal Bipvucaine surgical wash” and it was because as he went into my body, to replace my pacemaker, he saw that the old one had been wearing a hole right through my pectoral muscle for those past 10 years that it was inside of my chest! So he had to call other Dr’s to come and help him rebuild my Pec muscle first and then he wanted for that not to ever happen again. He tried so hard to stop a full body attack inside of me, from the CRPS. We were hopeful that he could do that as it has worked a few times in the past. But sadly for me, it did not work and I am now with CRPS “systemic and full body”.

After that surgery, which was not my last, I still had to have some jaw surgery, but that did go well. But I could have gotten depressed and given up on life. I don’t have an extended family as far as parents or siblings or Aunts, Uncles, cousins (just a few). It’s pretty much my husband, myself and our cat, Luna! We have 2 grown daughters with their husbands and 2 granddaughters with another on the way in June of 2016.  They are busy and have their own lives to live, but I’m very close to my daughters and so glad of that. Still, because I try so hard to downplay my feelings of being in pain, nobody really “gets it” except those who truly live or haved lived in the same house with me for an extended period of time. It’s hard to explain to friends and family that you are on medication for pain, but that mornings are still bad for me and the pain gets worse with each outing and the more I do. Nobody except someone with daily chronic nerve pain and more, can truly understand. It is OK though because I needed to find a way to help myself and not complain to everyone around me every minute of every day. It makes people tired to be around me if or when I do that. I learned that lesson very early on.

So I became involved in something other than thinking about myself. I became a “chemo angel”, a card angel, special assignment angel and I became a prayer angel. These are all for the same non profit org. I actually volunteer and I get daily emails of who to pray for and then I get a list of who might need a cheer up letter or card, with a small mail-able uplifting item. I get assigned a “buddy” who is going through chemo-therapy. I accept or decline the assignment and then I go from there. If it is a good “fit”, and usually it is; I accept and then I start to send a weekly letter and cheer up mail to them. I send small mail-able items, such as: magnets, book marks, tea bags and such. It is good for me and I enjoy doing it. I have a cat, as I mentioned above, her name is “Luna” but online and for chemo angel kids, she is “Angel Kitty Luna”. The stories for my assignments, which are children, they get stuff from “Angel Kitty Luna”. She writes stories about chasing bugs and jumping up at flies and swiping them with her paws. She tells of how she drinks water from the faucet and sleeps on me, her “momma”. She has exciting adventures and it makes the children smile for a few moments. That makes me happy and it takes my mind off of my own illnesses. I am not allowed to be sad or grumpy or talk about my own problems. I do not ask for nor expect, “thank you’s”. I hear back from some of my “buddy’s” and/or their families, and sometimes I never hear anything…that’s OK too.

I started to dabble in making jewelry one time when we were on an overnight trip with our daughter, who was about 18 at the time. We got some beads and elastic and just made a bracelet. Then I started to look for “awareness” beads online. I started making Awareness jewelry in earrings and bracelets. I would put them up online after I made a website and started to sell them. Then I started some fun other jewelry items as well, such as: Pet jewlery, Swarovski crystal necklace, earrings sets and just a lot of different things. People asked me to make jewelry for their wedding and wedding party. I was so excited to be doing something that I could do sometimes, at my own pace and I took no money except to replenish supplies. The money went to whichever charity the items were for, including the Humane Society.  If it was for a wedding party, then I made it their gift when at all possible.

I got involved in Bible studies when I could, but then I missed so much because they were all in the mornings or later in evenings and I couldn’t do well at either. I started making “groups” for support online and inviting everyone with any pain, or Invisible Illnesses to join. I made the groups “closed” and one is “secret” and one is just “private” and people can choose both or either one to join. I am the only administrator for the groups and it works well for me in that, this way not “too many hands in the pot”.  I don’t tolerate any drama and if I come across a post that is in any way demeaning or hurtful to anyone in any way, I remove it. I have  a couple of “pages” too. Some are ….or actually only one is for people in pain with Invisible Diseases, chronic pain and issues such as these.  The other pages that I have are for ” Angel Kitty Luna” , for helping those who’ve lost hope or who’ve been abused, also for my second love and my old career; that of ASL and Artistic Interpreting. That page is called “I Luv ASL”. I post information sometimes about different things that has to do with Deaf Culture.  Other times I post a song that I might do in ASL. I try to do an Artistic version of a top 40 song or a song to motivate people or make them feel happy.

I have a few very wonderful friends in real life, who truly understand or try to when Im’ unable to go someplace that we’d planned on going, for example. I try to go out to dinner once in awhile with my husband and these good friends. We have a really nice time, but then afterwards I’m pretty much exhausted and in pain. Same with putting some quality time into being with my lovely oldest daughter who lives only blocks away. We do something several times per week, but only for an hour to two at most.  Then the rest of the day I’m exhausted and in pain. But it is worth it because  I get to spend time with our granddaughters and daughter. On weekends we try whenever possible to visit our other daughter and son in law, who are due to have a baby girl, Kiera, in June of 2016 maybe once a month or so?

I have been a mentor for RSDHOPE.org since about 2008, after having a mentor from them for a year after my diagnosis. It helped me so much to have someone who understood and could answer my questions and knew what I was going through. Now I try to do it back whenever they need my help. I feel like the Orsini family is my family too. I’ve become an Advocate for those in Pain, chronic pain and with Invisible disabilities. I’ve helped the I.D.A. by doing a feature commercial for them a couple of years ago. I write to try and give people idea and information. I love blogging and helping others. I do try to help other pain org. also at times when they might need me to write something. I have tried to be a health activist by writing for Pain News Network as a guest columnist and I am an avid “tweeter” about CRPS and chronic pain as well.

We can live beyond our pain even though we must live with it. I don’t mean that we should “make light” of it.  We can share experiences with others and have our friends that have pain. I feel we should also get “out of that” at times and have friends and activities not involving Dr.’s and only our “sick friends”. If you don’t feel well you might try music or writing, like I do? There’s always knitting, crocheting and things with your hands if they don’t hurt too much. Some can do Yoga, that’s not a thing I can do. But you see there are Bible studies and mom’s groups and libraries, coffee shops and a whole world of things to try and keep your mind off of your pain. I honestly have full body, systemic CRPS and I have several bad pain diseases such as : Rheumatoid and Osteoarthritis, Arnold Chiari malformation I, Degenerative Disc Disease with multiple herniated and bulging discs in my neck and lumbar spine with L-4/5 radiculopathy. I have Poloyneuropathy in Collagen Vascular Disease and Autonomic Neurapathy along with several heart problems and a pacemaker.  I have right long thoracic nerve injury where an 8″ span of nerve is broken and I have numbness in my hands/feet due to a CVA in 2006. I have Prinzmetal Angina which are Coronary Spasms. It’s alot and I have much pain. But the pain Dr. even told me “I cannot ever take your pain away, but I can try to make you more comfortable”. So that’s what we do. I take medications to help and I get about 2 good hours per day before I start to slide. I am unable to drive more than to just go to the corner store and get milk or eggs or something like that. So I truly know it’s not an easy thing to do.

Just try your very best to get involved in something, anything aside and outside of your pain. Try not to do something where you need a “pat on the back” or you need to “pat yourself on the back”. You don’t need to have a “title” or be a “important” or “special” person in the pain community because you ARE an IMPORTANT and SPECIAL person no matter what! Do something that makes you feel good just for you and believe me, if you can relax even for 10 minutes, it can be TV or music, a book or quiet time with your fur baby or babies. But those 10 minutes when your body and mind are relaxing will do you a world of good in your physical and mental world. Get someone to drive you if you are unable to drive and do something like a small outing even once per month. ..get out of the house if at all possible. These things will cheer you up, I promise! Lastly, find some organization, or a family that could use some kind of help that you are able to do or give? Like I do the writing letters or even just join a prayer group at a church? Be someone who prays for others, that cannot hurt you? If you don’t have that belief, find something that you believe strongly in and participate in some way?

If we just concentrate on the pain, that is all we will have. If we just concentrate on Facebook, Twitter and/or online groups 100%, we must remember that all of these people that we associate with in the “illness themed groups” are also all fighting their own battles with pain. They can feel vulnerable, in pain and intolerable at times; when they may not mean to be that way at all! Make sure you are getting real and up to date information and double check it for yourself if you know how to use the internet. Help a group or a person in need ….you don’t need money to do that. You can do many things that you probably don’t give yourself enough credit for doing.

Know that I always have all of our lives best interest in my heart an soul and mind. I want only what is good for you and for me. I want to help and the other way to help is to “KEEP HOPE ALIVE” (my favorite slogan that I started using as a Meme and in other ways during CRPS Awareness month in 2013!!). Don’t lose hope and do not lose your temper. If you cannot sleep, that doesn’t help with pain either. Try as best you can to sleep or take a nap during the day if at all possible. Try to Live beyond the pain and use it to work for you and your life instead of against you and your life! Try to find something to make you happy and remember the best way to make yourself happy is by doing something kind for others without asking anything in return. Random acts of kindness are also free and do a lot of good for you and others. Peace to you and know that someone cares!

Cats help raise hope for CRPS/RSD

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