Category: Guest Blogger for RSDSA

By Anonymous for the RSDSA blog

My life truly changed when I was 23 years old. As I look back, I realize that I was in my golden years. I just completed my bachelors in Food Service Management from Johnson and Wales University. Even at a young age, I was interested in food so I decided to pursue my passion and turn it into a career. As a manager for Darden Restaurants, I led the region in guest services while also teaching other restaurants what practices I followed to ensure a great guest experience. I worked ten hour days, five days a week, and was on my feet about 90 percent of the time. It didn’t bother me though. I had a good job, a great girlfriend, and an incredibly supportive family so you could say that my life was pretty amazing. I was able to do everything that I loved and I felt like nothing could stop me. I was even looking to advance in my field which would have enabled me to grow as a person. The world was in my hands up until March 2014 when the world seemed to stop moving.

It was a Friday afternoon and I was finishing up the morning shift at the restaurant. I was standing in the front greeting customers with the hostess when an excruciating pain took over the lower part of my left leg. Unsure of what was happening to me, I began to panic and didn’t know where to turn. I was trying to remember what I had done that could have caused this pain. I was always running around, lifting heavy boxes, and never really paid any attention to what it was doing to my body. I truly felt invincible and didn’t think that anything could slow me down. I had no idea that my whole life as I knew it was about to change. To make matters worse, I had a terrible relationship with my boss. When asked how everything was going, I confessed to her that I was having trouble walking. Instead of showing any type of concern, she laughed in my face and continued on her way. I was already in a panic and felt so alone after that encounter. Hoping that the pain would subside, I continued to push through my management duties. My crew kept insisting that I go get checked out as they were watching me limp around the restaurant. After struggling for three days, I decided that I was time that I went to the doctor.

For about a month after the first incident, I had undergone every test possible. X-rays, MRIs, sonograms, bone scans, blood tests, you name it, I’ve done it. I went to physical therapy, tried acupuncture, had a bunch of steroid injections. Nothing helped at all. My doctor then tested me for a condition called Exertional Compartment Syndrome which normally rears its ugly head in car crash victims. All of my doctors had exhausted all of their options and this was the last thing that they could think of. I had tested positive. I was ecstatic that they had figured out the problem and I was one step closer to the solution. I just wanted to get better so I could go back to work. A month later, I underwent a successful surgery. Unfortunately, during said surgery, they found a split tendon that one of my prior tests had missed. They had placed me in a soft cast and I was unable to put pressure on my foot for over a month. The biggest problem, however, was that I still had that same pain in my lower leg. I knew something was still wrong. Everyone kept telling me it was just side effects from the surgery, but my gut was telling me differently.

A few months later, my doctor went in and repaired my split tendon. Yet again, the same pain that everyone kept dismissing was still apparent. The day before Thanksgiving of that same year, I fell off of a balancing device while at physical therapy. This fall caused me to sprain my ankle in the same leg and I was told that I would feel better in a week or two. I was honestly getting tired of being told that it would get better when it wasn’t getting better. It was really easy for someone to say this when they had absolutely no idea what I was going through. Despite my feelings, I continued to push through and remained positive as I was recuperating.

2015 rolled around and I was hoping that this year would be better than last. The pain was so severe that I couldn’t even put my feet under the sheets due to the sensitivity. My foot was so swollen that I could no longer wear shoes, even though I kept buying new ones to try and make myself feel better.  Crocs were about all that would fit me so I used those and my crutches to try and make a new fashion statement. I tried to remain positive and kept hoping that things would get better. During one office visit, I had two doctors examine me. I knew that something was up when they looked at each other and then left the room abruptly. Upon their return, I was told that there was a chance that I had RSD. ”What is RSD?” I asked. I have never heard of this disease before. My doctor told me that he wasn’t diagnosing me and that it was just a theory. He told me not to worry my parents, so naturally, I told them immediately. I still didn’t know what it was and couldn’t bring myself to do any research on this mysterious three letter word. I was so scared for what I might find and didn’t want to worry more than I already was.

In March of the same year, I visited a specialist to determine whether or not I had RSD. He examined my now purple foot and stated that I did, indeed, have RSD. He told me that he would perform a nerve block in my back. After being injected twice, my pain remained the same and on some days, felt worse. The next step would be for me to get an implant in my back. This was supposed to trick my brain into thinking that I was not in any pain. At 24 years old, this wasn’t at all where I thought I would be. An implant? This is insane! I hesitated at first but the pain was becoming too much to bear and I was desperate for a way out. Before being diagnosed family members thought that I must just have a low pain tolerance or maybe I was looking for attention. Some even thought that it was all in my head as I kept getting test after test and everything came back negative. I began to wonder: Was it? Am I losing my mind? At that point I didn’t know what was worse, the constant pain I was feeling or the fact that I might be on the brink of a mental breakdown due to what people were saying.  I even lost people who I thought were my friends. Its funny how when you are at your lowest, people who you thought cared suddenly disappear. Cliche, I know, but this experience has proved it to be true. Not knowing where to turn or who I could lean on during all of this made my journey even worse. I grew more and more depressed everyday and was just hoping that one day they will find a cure.

In August of 2015, an electric box was surgically implanted in my back. The pain after that surgery distracted me a little from the foot pain I was still experiencing. Lucky me, right? The good news is, I was able to start walking again. Physical therapy became a little easier, but the pain was still there. I was given a vast amount of narcotics to ease said pain. Friends and family cautioned me about taking these drugs for they are extremely addicting. This made me even more paranoid and depressed. Is this pain worth the risk? My body was screaming yes but my head was saying no. In the end, I caved. I couldn’t live every day with this pain and I still struggle up until this very day.  Although these narcotics do allow me to function, I am definitely not addicted.  I do see why people say and think what they do, but luckily I have an incredibly strong mental capability to just take them as prescribed even when my body screaming at me to take more to lower my pain.  I actually take less then my doctors prescribe just because I fear my body will become dependent and I will need to increase my dose. This was the last thing that the doctors could do for me. Anything else that may come up would be experimental.

Lets fast forward to today.  Since being diagnosed with CRPS of the left ankle, my pain spread my leg throughout my entire body. I also have tried numerous ways to make living with CRPS easier. My medications have changed consistently. I recently tried a new implant called a DRG stimulator which works with a special bundle of nerves in your back. Fail. The list also includes Ketamine infusions which is a highly dangerous street drug, medical marijuana, narcotics, physical therapy, mental therapy, meditation, even special shoes. Just a few months ago, I started a new diet called the auto immune diet, also known as, ‘you can’t eat anything’ diet. They even exclude basic seasonings! This is the worst for someone who has such a passion for food. I am willing to give anything a shot at this point so we will see what happens with that. This condition is incredibly debilitating. My mind is in a complete fog most of the time. I am constantly losing things, forgetting things, and hurting myself.

I have finally accepted that I have this condition and it isn’t going anywhere.  The only catch is, I can’t do too much for too long. After a few short hours, I need to retire to my bed for the rest of the day. I joined support groups with others living with CRPS as I try and find new ways to cope. Sometimes hearing another person’s journey can help me through mine. It also helps to express my feelings to people who understand exactly what I am going through. Over time, my family and friends have realized that this condition is serious and I am not in control. I am lucky to have their support though. They are honestly the only thing that keeps me going. I try my best to stay as positive as possible and do whatever I can to better myself. If I learned one thing over these past years, it is that health is really the most important thing in the world. All of the money in the world would not be able to change my situation. I know that there are people out there battling this condition with me and it’s not an easy battle. I just hope that one day they will find something that can either cure or ease our pain. Until then, keep fighting my fellow warriors. I know that I will never stop.

By Dr. Timothy Deer

CRPS/RSD is a debilitating painful condition affecting thousands of patients.  Chronic pain as a result of CRPS not only impacts the patient, but the patient’s family and loved ones as well.  Many are forced to give up work or other meaningful life and family activities due to the ongoing persistent pain.  Many CRPS patients continue to suffer extreme pain and limited function in spite of receiving the correct diagnosis and appropriate care.

Treatment guidelines for CRPS exist and have been widely published and accepted in the national and international medical community.  Those guidelines start with conservative care including physical therapy, nerve-pain medications, supportive counseling, and in some cases nerve blocks.  For patients not responding to those treatments, neuromodulation therapies are considered.  Neuromodulation is the application of electrical signals to the nervous system to control chronic pain.  The first studies to demonstrate neuromodulation’s favorable impact on severe CRPS are now over a decade old.  A new neuromodulation technique called Dorsal Root Ganglion (DRG) stimulation has been evaluated and found effective specifically in the treatment of CRPS.

The ACCURATE clinical study is the largest randomized, controlled neurostimulation trial conducted in patients with complex regional pain syndrome (CRPS) and peripheral causalgia, to assess the safety and efficacy of dorsal root ganglion or DRG stimulation in the treatment of chronic, intractable pain (defined as difficult-to-treat pain that has been present for a minimum of six months). There were 152 subjects with chronic, intractable pain of the lower limbs enrolled and randomized in the ACCURATE clinical study. They were randomized to a DRG stimulation group or a control group (using a traditional neurostimulation device) across 22 investigational sites. The ACCURATE clinical study was designed to measure whether a new type of neurostimulation, called DRG therapy, can help more patients with difficult-to-treat isolated pain caused by CRPS of the lower limbs. This kind of pain may be focused in a lower extremity (foot, knee, hip or groin); it is believed to be a problem in the nervous system affecting the way pain signals are sent between the brain and the rest of the body. But for patients with CRPS, traditional pain management methods— including traditional neurostimulation— often don’t work. All 152 patients enrolled and randomized in the ACCURATE clinical study experienced chronic pain in a lower extremity. The pain typically began after an injury, surgery, or other medical intervention and continued for six or more months.  The goal of the ACCURATE clinical study was to demonstrate safety and efficacy of DRG stimulation as compared to traditional neurostimulation.  What were the results of the ACCURATE study? 86% of DRG patients had persistent pain relief at 12 months, vs 70% in the control group.  DRG patients had an average of 81.4% reduction in their pain at 12 months and 94.5% of DRG patients did not experience stimulation outside the area of pain at 12 months.

When a patient is felt to be a DRG stimulation candidate, a trial procedure is scheduled.  This is done on an outpatient basis, where the stimulating lead or wire is carefully placed near the DRG structure at the appropriate location for that patient’s CRPS pain. This temporary lead is kept in place for about one week to determine the patient’s response to therapy, and to decide whether to implant the long-term DRG stimulation device (which is similar to a pacemaker, see figure X). This trial period is an important feature of DRG stimulation allowing the patient the opportunity to evaluate the effectiveness of the therapy before making a decision on implant in collaboration with their physician.

Follow up information at one year suggest the patient has a better than 80% chance of reducing or eliminating their opioids. This is done most effectively when DRG is used as part of a multimodal treatment plan using physical medicine, counseling and other modalities.

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.

*     *     *     *     *

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.