Category: Guest Blogger for RSDSA

By Guest Blogger Sarah Bigham

This blog was originally featured on The Idea Crucible (click here) and featured this thank you: “Thanks to Lori Leitzel Rice for inviting me to contribute my patient-focused perspective on practitioner communication. Lori is my CranioSacral massage therapist, and a dear friend who has seen me through the worst times of my life. I am forever grateful for CranioSacral techniques as well as Lori’s wonderful, listening hands.”

My name is Sarah and I am a chronic pain warrior. I wish a support group existed for people like me, held in a location down the block (car travel makes me flare) with squishy furniture (the only kind I can sit on comfortably, and even then for a maximum of 30 minutes), multiple bathrooms (I have interstitial cystitis, among a host of other things, and those of us with this condition always feel like we have to pee), and maybe donuts (although only a few of us could eat them given the number of special diets chronic pain patients are advised to follow). I would like to be surrounded by others with unrelenting pain, to feel connected to a fellowship of sufferers whose daily victories of staying alive and getting out of bed are remarkable accomplishments. I want us to be able to gather, a logistical impossibility due to the fickle nature of chronic pain, leaving us without the ability to plan activities as we never know if today will be a “good” day or a bad day, with good days being relative. Once you become a chronic pain warrior, you feel a pang in your chest for the “before” days, when pain was not yet your constant companion, when you rolled out of bed ready to take on the world, without a thought about your body parts.

I know what it is to fear the light of morning, to watch friends fade away, to disappoint family members who wanted you to be somewhere for celebrations, and, perhaps worst of all, to sense a whiff of dismissal or condescension from the medical practitioners whose diagnostic and treatment skills you have often waited so long to benefit from.

I suspect chronic pain is like parenthood. It is nearly impossible to truly understand until you have experienced it yourself. I am not a parent and do not attempt to give parenting advice. However, it amazes me how many people I interact with who do not have chronic pain feel free, entitled even, to dispense opinions and make judgements. For instance, I have lost count of the number of perhaps well-meaning people who have pronounced water-based exercise as a panacea for my pain. I have a skin condition that flares from contact with chlorine which rules out all of the public pools in my area. I would love to try a salt water pool, but the only ones in my county are privately owned. I am not friends with those lucky enough to afford one, and I live hours from the sea.

While I have blessedly found treatment options that keep the darkest pain at bay, I know what it is to hurt so badly that the thought of taking a kitchen knife to cut out the painful spots seems nearly a sane idea at 3 a.m. when you have given up the pretense of trying to sleep as the pain continues its gouging. I know what it is to lie in bed, sheets soaked with tears and sweat, attempting to remain absolutely still, knowing that movement of any kind will set off a chain reaction of pain that rattles your teeth. I know what it is to experience nerve pain so intense that you are unable to use your arm to feed yourself, to lift your foot in a normal gait – making do with an odd kind of shuffle so as to not jolt the intensely painful spot on the top of your right foot that, without any warning, started screaming in pain several days ago. I know what it is to ache so badly in your muscles and joints that initial steps out of bed make you look like a toddler while feeling like a victim of torture, and how it can take up to an hour before attempting the stairs down to the kitchen where breakfast is waiting. I know what it is to beg the heavens for any kind of relief, to bargain with the devil and agree to lop minutes, hours, days off of your life if the pain could just be dialed down enough for you to think clearly. I know what it is to have stabbing, scalding pain in your pelvis, causing spasms that involuntarily bend you in half. I know what it is to plead with your nervous system to lose consciousness or your mind to dissociate so that you can live through the jolts of pain that slam through your body. I know pain. I live it every day.

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As a chronic pain warrior, the most important characteristic I look for in a care provider is honest-to-god empathy, from someone who truly listens and tries to meet me where I am, not where they think I should be. Lori is one of those people[i]. I am very lucky to have her and her expertise with CranioSacral techniques as part of my care team, along with others who excel in acupuncture, rolfing, physical therapy, and other healing methods. (I cannot even contemplate where I would be without these treatments, as such ruminations are very grim indeed.) These are individuals who have chosen careers as helpers. They listen to my words, and my body, and treat me as a whole person. What a refreshing change it is to walk into their offices as opposed to some of the “ologists” I have seen who make contact only with their screens and never with my eyes, who hush me as I try to tell my story, preferring to review blood work and testing results instead of hearing about my journey into pain, or who focus solely on treating my thyroid or liver or colon as if I am an organ specimen before them.

As a writer, I have covered the topic of dismissive medical personnel in other work. I feel certain that all of us who identify as chronic pain warriors have stories to tell. They are tucked away on our memory shelves and come back to haunt us in the lonely hours. I have had medical personnel explain that the first possible cause of my long and varied (and frightening) list of symptoms would be psychiatric issues. One doctor wondered if maybe my bra was too tight. I was asked if I might have performance anxiety, with the shockingly inappropriate implication that this could mean in my role as a professor, or in the bedroom. I have been told, with great confidence and disdain, that my symptoms are not related to a particular doctor’s area of expertise, only to find out later that this is not at all the case. I have lost track of how many medical providers have said some version of, “I have never heard of anything like that before,” as their words grow ever quieter toward the end, trailing off and leaving me with the distinct impression that they doubt my experiences. I am also the patient Lori mentioned who encountered the doctor who gleefully told me what a 10 really was.[ii] The laughter haunts me.

For many years, I held these encounters and blistering words inside and replayed them in my mind, over and over, to the point where I nearly started to doubt myself. These were experts in their fields. Their words carry a weight they may never fully realize. Words wound, inflicting the deepest slashes on those already in pain, already taxed in body and mind, already vulnerable due to the enormous effort required to simply exist. I cried about these words and the laughter and the sneering looks for far too long. And then I got mad. Now, unless utterly without another option, I refuse to return to any care provider who does not treat me with respect, as a person in pain who deserves some relief, and to be heard.

In my ideal world, where I retreat in my mind while my body is fighting its own wars, I would work to change the system. I have read endless articles, blogs, and books that describe how patients can be more prepared for their doctor visits, how I, as a chronic pain warrior, can get the most out of a 15 minute appointment, and how to communicate with your busy, overworked doctor. I get it. Some patients are just annoying. And those with chronic or mysterious, ongoing conditions are difficult to manage. As a patient, I have been well trained, socialized, and reminded to carefully listen to my doctors, take notes, and to studiously follow their recommendations.

Now, I’d like to flip the script and prioritize the power of true listening for health care providers, starting with medical (or nursing or PT or pharmacy, etc.) school and continuing on throughout a doctor’s years of practice. Yes, organic chemistry is important for future medical providers to know. But so are appropriate and supportive interpersonal skills. We cannot simply assume that everyone possesses these skills. Those assumptions have gotten us where we are, to the place where patients in pain hear the kinds of things Lori and I have outlined.

As a professor, my students evaluate me each semester, in every class I teach. This information is used as part of annual performance reviews, contract renewals, and promotion. If there are communication problems or complaints about the conveying of course material or comments about a lack of respect shown to students or any other noted challenges, faculty members are expected to address these concerns, and their subsequent evaluations better show some improvement.

Perhaps it is time to do something similar with healthcare providers. I know they are already burdened with never-ending forms and charts, but they would not need to complete any additional paperwork. Patients like me would fill out an evaluation. And, if there are issues, if there is a pattern of communication difficulties, if there are patients who are not feeling heard, then it is time for an intervention.

Just as those who acquire too many speeding tickets or driving violations must attend special safety seminars to keep their licenses, doctors with poor evaluations related to communication should have to attend workshops about interacting with patients. Their licenses would be suspended until they could clearly show, in case after case, that they are able to respond appropriately and empathetically to those in pain. Just as drivers must meet certain standards to be let back on the road, doctors would have to work with mentors who observe their interactions until it is safe to let them return to seeing patients. When they have learned to listen and not sigh, when they have learned to listen and not talk over the patient, when they have learned to listen and not dismiss what a patient is desperately trying to tell them, when they have learned to listen and not laugh at an incredibly vulnerable person in pain, then, and only then, shall we release them back to care for, and listen to, patients.

Are you a healthcare provider who truly listens? Before immediately saying yes and moving on, ask your spouse, your children, your staff, your colleagues, and even your patients. Do they agree? If so, you have my deep gratitude on behalf of chronic pain patients. If the answer is no, I beg you to sign up for a communications-related continuing education opportunity through your professional organizations, take a communications class at your local community college, or ask a colleague you know to be an expert patient communicator to mentor you and perhaps let you shadow.

Healing comes in many forms. Listening ears and eyes and hands may be the most powerful tools you possess. Use them wisely and use them widely. Legions of chronic pain warriors will be eternally thankful.

[i] Rice, L. L. (2017, September 11). To Err on the Side of Listening. Retrieved October 03, 2017, from https://www.theideacrucible.com/articles/listeningarticle

[ii] Rice, L. L. (2017, September 11). To Err on the Side of Listening. Retrieved October 03, 2017, from https://www.theideacrucible.com/articles/listeningarticle

By Guest Blogger Kelly Hodgkins

Some people with CRPS have a difficult time discovering what they can do while living in pain. Guest blogger Kelly found a way to share her skill set in a way that is convenient for her and that works with their pain. Those who can’t do, teach! See how she is working here.

Working with CRPS is a tussle between my goals and deadlines and what my body will allow me to accomplish each day. Every morning I assess myself and discuss with my business partner, who fortunately is my mum, what I can get done and we reprioritize the day or week’s activities.

This is a vast improvement from where I was when my journey with CRPS began in 2008. I experienced incredible pain in my wrist and it was interfering with my ability to use my right arm. I went to the GP who asked my to see an orthopaedic surgeon who diagnosed ganglions. I was operated on to remove them only to have the pain increase post-op. I was referred to a hand specialist in Johannesburg, who after a number of tests, scans and shots of cortisone, operated on me removing 3cm of inflammation and prescribed 6 months of rest and rehab. I was on a cocktail of potent anti-inflammatories and pain killers, none of which made an iota of difference. My occupational therapist and physiotherapist worked tirelessly to regain my movement and try and relieve my pain.

2 years in I was in excruciating pain. I spent most days in bed or on the couch crying and was physically a wreck. I had managed to complete my degree by doing my exams orally as I could no longer write. I couldn’t do any of my hobbies aside from spending time with Texie, because my horse is so amazing and doesn’t need a rope or saddle to respond. I did my best to work but it was a disaster.

By divine intervention, an associate referred us to a neurologist who took the time to understand my pain and booked me into hospital for two days of extensive testing. On the evening of the second night, Dr Mohomed came in. He is a specialist physician / rheumatologist and he diagnosed me with Complex Regional Pain Syndrome (CRPS) formerly known as RSDS.

CRPS is defined by the RSDSA as “a chronic neuro-inflammatory disorder…CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale. CRPS generally follows a musculoskeletal injury, a nerve injury, surgery or immobilization. The persistent pain and disability associated with CRPS/RSD require coordinated, interdisciplinary, patient-centered care to achieve pain reduction/cessation and better function.” I am a living testimony to this, and, through a multifaceted approach, I am back to working in marketing and enjoying life.

Recently, as social media has come to the fore, I have engaged with it and created campaigns for our brands on it with success and it has led to others in my community asking for help with their social media. They want to be able to do it for themselves and so are looking for training. CRPS doesn’t take kindly to dates and times and the idea of 20 people relying on me for several hours is stressful! Thank goodness for technology, the online learning platforms appear to be the best of both! Udemy, Skillshare and the like allow those with the desire to teach to reach out to those with the problems without leaving home!

So, I began a two month journey of learning how to lead an online class, how to film it, edit and resource it. WOW! Firstly, I have a new level of respect for teachers – they are amazing people! Secondly, it was a lot harder than I anticipated but also a lot more fun. Thirdly, I cannot tell you the sense of accomplishment I have now that my course is online. The best part was I could fit this around my good and bad days, no pressure and it will be a passive stream of income! If you are someone with a limitation like CRPS but have knowledge to share, I encourage you to do it! Let the world see the uniquely beautiful you!

By Guest Blogger Melissa Lovitz

While many people across the United States are preparing for Thanksgiving, we thought it would be fun to feature this listicle about what you can do every day to kick CRPS/RSD’s butt. This author wrote a great list for us to feature. Here’s what she does.

My RSD reminds me daily that I don’t have control over my body and I will hurt physically and mentally sometimes just because the wind blows. It’s easy to get defeated by this reality and lose power over your own life. RSD thrives off this mentality. It invades your body and is pleased by your compliance with its painful trajectory.

If I’m being honest, it’s easy to let RSD win and take over your friendships, family life, school or work aspirations, and your passions. I definitely have been down that slippery slope before. However after years of battling with my body that is riddled with pain, I have realized that even though it hurts I have control over the choices I make each day about the life I lead and the way I love myself and my ambitions – fiercely.

So, here are 5 things I do every day to kick RSD’s butt:

1. I don’t give my pain power

I won’t let it define me. You will rarely hear me talk about how much pain I am in. If I am talking about it, know it’s that bad. I won’t draw attention to the fact that something might hurt me, and when others do, I usually reply by saying, “I’m going to do it anyway” or “that’s life”. If I don’t give my pain power then I gain control over my life.

2. I bike to work

Biking to work for me is more of  a practical practice than a healthy lifestyle choice. Primarily, biking to work saves me time and helps me feel in control of my Boston-based commuter lifestyle. I can zip through heavy traffic on busy streets and when I’m ready to leave I just hop on my bike a go. In terms of my RSD,  biking to work helps me to do something with my body that makes me feel strong or like I’m relying on it. When my pain is really creeping up, I feel like my body’s betraying me. When I bike to work, I remember how amazing my body is even when it hurts and that it is strong. “My body is strong and I can trust it” is the mantra I gain by biking to work.

3. I stick to my plan for the day

I’m an athlete and I have chronic pain. They both come with unique challenges and successes. They’re both huge, real aspects of my life. When I was in high school I was a competitive gymnast. In college I did marching band at a Division 1 school. Now,  I’m a runner! Training for half marathons is one of the biggest accomplishments of my journey thus far! It’s helped me to better understand my capabilities and to tune into my body in a way that I was previously unable to. I stick to my training plan even when it hurts because I’d rather experience some moments of intense discomfort or a flare up than regret or resentment!

4. I practice mindfulness

Mindfulness practice stands in direct opposition to the common RSD solution – find a distraction. When I’m being mindful, I acknowledge my pain, but I am better able to apply tools and rational thinking to decide what to do next after I know how I’m feeling. Often people with RSD are encouraged to find ways to ignore the sensations they’re feeling. Conversely, mindfulness helps me dive in and be aware of my body and my pain. I ask myself questions such as “have I felt this pain before?” to get a better sense whether this is a familiar pain or an impending injury. This mindset helps me essentially shift my experience of pain from an emotional and physical experience to an intellectual one. With this awareness of my body’s cues and signals, I can notice my pain, accept its existence, and move forward (literally). As  a bonus, being mindful about my body also helped me tune into being mindful of my emotions!

5. I live authentically

I don’t deny my reality or try to pretend my pain doesn’t exist. I live fully and with a whole heart. I approach each day as an opportunity to be vulnerable and real about my strengths and my shortcomings. Being true and true to myself shows my RSD that it cannot take me down. I am stronger than this pain.

What strategies do you use to kick RSD’s butt? How do you show your pain that you’re in control?

By RSDSA Board Member, Bob Lane

RSDSA welcomes board member Bob Lane to TheTuesdayBurn. Mr. Lane has been a CRPS caregiver, a support group facilitator, a foundation leader, and now an RSDSA Board Member. See CRPS through his eyes in all different perspectives.

I would have never thought that I would be writing a blog about CRPS. For those of us in the CRPS community, everyone has a story. This is my story…

Where do I begin? As a former caregiver for someone who experienced full body CRPS, a Board Member of RSDSA, or as a CRPS support group founder and leader? As you will see, there is an obvious progression to this time-line.

Caregiver

My wife, Maria, was diagnosed with RSD/CRPS, almost 8 years ago now, after a simple toe surgery. I was actually working in the healthcare industry, at the time, in post-operative pain management as a medical device representative. Based on what I knew and the relationships that I had established in the medical community, I was confident that we could manage her CRPS and get ahead of things.  After all, I knew all the top surgeons and pain specialists in the area.

I was wrong. I found out quickly that this condition doesn’t really care who you are or who you know.

At the time, we tried every treatment available and even considered flying to Germany for a ketamine coma, before they were banned. All of these treatments offered no relief and only added medication side effects as additional complication. Eventually, Maria developed full body CRPS, an uncommon progression of CRPS. My goal at the time was to continue to offer hope to my wife. Severe depression was becoming very obvious. The constant pain and social isolation only contributed to her depression. Nobody, including family and friends, understood. Eventually, Maria succumbed to her battle with this horrible disease after an intense 3 years of fighting.

Being a caregiver is a choice. Some people can’t seem to be able to cope with the responsibility and subsequently abandon the responsibility. For others, there is no alternative option. For those that make the choice to stay and support their loved one, you all understand why you made the choice.

As a caregiver for someone with CRPS, it can be very overwhelming and frustrating, as many of you know. You want to do everything you can to care for your loved one. Not only the physical requirements, but the emotional requirements seem to be never ending. Always trying to keep the one you love as physically comfortable as possible, but also trying to keep hope from slipping away. You’re constantly challenged to try and balance the needs of your loved one who is suffering with the everyday responsibilities of your job, family and, honestly, just keeping yourself from falling off the ledge. My hats off to all the caregivers… you’re incredibly loving and selfless. Do everything you can not to fall off the edge. Without you… who else is there?

This brings me to the second chapter of my life with CRPS.

Board Member of RSDSA

During our journey to find a “fix” for my wife, I was made aware of RSDSA. I frequently visited their website for new treatments and a better understanding of CRPS. After my wife’s passing, I decided to become active with RSDSA and eventually became a member of the board of directors. I still wanted to continue my wife’s fight for other. Maybe it was just “unfinished business” for me. As a board member, I wanted to make a difference in so many ways. I created Maria’s Fund that focused on 3 initiatives that I felt very strongly about. I wanted to increase the awareness of CRPS to the medical community, since most doctors are not familiar with this disease. I wanted to assist those with CRPS and their families with navigating the healthcare insurance maze, since most of the treatment for CRPS are not covered by any insurance programs. And finally, I wanted to increase the awareness of the “elephant in the room,” suicide, since CRPS has the highest suicide rate of any medical condition.

All of these may appear to be lofty goals, but I have to believe that, as a member of RSDSA, I can make some impact on all of these initiatives. Obviously, it’s a work in progress. Oops, almost forgot something! I also wanted to offer more direct support for those CRPS warriors in my neighborhood of Denver. So here’s the next chapter…

Founder and Facilitator of the Denver Metro CRPS Support Group.

Wow!! What an experience this has become. After hearing that there wasn’t an active CRPS support group in Denver, I decided to see if there were any CRPS warriors in the neighborhood that could use some help. Well, guess what? CRPS sufferers seem to be everywhere, even in Colorado; more than I would have imagined. Our first few meeting had 3-6 attendees. One year later, we had 18 attend. The membership has now grown to almost 30.

The first thing that I hear from these warriors is that they can’t believe that there are other people suffering from CRPS. Once they attend our meeting, they feel a sense of relief and camaraderie. The discussions are very interactive and enlightening.

The stories are all too familiar. Missed/delayed diagnosis, lack of financial resources for uninsured treatments, lack of awareness of CRPS within the medical community, lack of healthcare resources, etc. Everyone is seeking their own path to battle this disease. This collection of individuals, as well as all others throughout the country, are struggling just get up every morning to see how they can make it through one more day. These are indeed Warriors and I am so proud to be able to offer whatever support I can to help them face that day.

By Guest Blogger Nancy Meagher

Nancy details a day in her life with CRPS pain. A day of hot tubs, wine, and workout routines. What does Nancy learn through her journey through time? Find out!

Submerged in the rough swirling water, my feet become redder than most. All ten of my half moon nail beds glow almost a fluorescent white. They reach the tips of each toe.

I feel a bit freakish as I climb out of this warm friendly place and I slip into the pool to begin my daily laps. The cold water of the pool is duly noted by my overheated feet.

The sudden temperature drop causes them to sting and I switch from laps to kick board. This high alert spike in pain is completely my doing. The reality of that is duly noted by – me.

On cloudy cold days, when steam is rising from the lovely hot tub and all the power jets are pumping full force, settling myself into it and resting my tired head on the tiled rim feels worth it.

So does that second glass of wine when dining out. It’s hard to say no thanks to more happiness. Like a small canoe overturned on open water, my nervous system and I will eventually right ourselves. Then we’ll return to a more familiar level of pain.

After the pool I change from swimsuit to spandex. I’ll climb to the second floor of the gym where I ride the stationary bike. I’ve added rowing to my workout too. The rowing machines face the pool and I imagine I’m on the quiet inlet of the Connecticut River where my husband and I recently joined a “Summer Dragon Boat” canoe ride.

A bald eagle landed in the trees above us. On cue we pressed our oars forward causing the boat to stop. We looked up. She stared down at eighteen rowers for a full ten minutes. Comfortable with her body, she lifted her wings in slow motion and was easily airborne.

I’ve had CRPS for 5 years. After two years, I rented a rolling walker from the local Senior Center, and used that to walk our dog several times a week.

After three years I bought a wheel chair for long excursions like walking through art museums or visiting our son in Brooklyn.

We bought the wheelchair second hand in the town where the Boston Marathon begins each year. Strange that we picked it up the day before the actual Marathon. Runners in spandex and pricey sneakers dined on pasta in the outdoor Café where we stopped for lunch.

Soon enough, I realized that with the comfort of these walking aids, I was losing muscle and bone density. I realized that if I walked v-e-r-y slowly, I could manage small, short distances without help. I’ve tried really hard to let go of vanity. Sometimes I walk so slowly that people might ask if I need
help.

In restaurants when making my way to the bathroom, folks might think that I’ve had too much wine. God grant me the serenity to:

1. Stay out of the Hot Tub starting: TODAY.
2. To limit myself to one glass of wine when dining out beginning TODAY.
3. To be an invested partner with my nervous system and comfortable with my hard working body.
4. To imitate the Eagle, moving slowly and with confidence.

Written by Katinka van der Merwe

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

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

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

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

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

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

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

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

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

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

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

OUR “SEVEN PUNCH” SYSTEM

WAKING UP THE VAGUS NERVE

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

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

NEUROMUSCULAR REEDUCATION

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

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

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

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

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

This system has been FDA approved specifically for:

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

FREQUENCY SPECIFIC MICROCURRENT

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

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

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

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

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

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

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

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

NERVOUS SYSTEM REHABILITATION

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

DETOXIFICATION

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

FUNCTIONAL BLOOD PANEL ANALYSIS

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

SUPPLEMENTATION BASED ON YOUR UNIQUE DNA

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

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

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

By Guest Blogger Amy Marie Suss

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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