Opinion - RSDSA

CRPS Awareness Day 10: CRPS Teacher Turned Student

November 10, 2017

By Guest Blogger Lara Santoro, Ph.D.

Lana Edwards Santoro, Ph.D., is a teacher, educational consultant, writer, and amateur photographer. She also lives with Complex Regional Pain Syndrome (CRPS). Embracing CRPS turned this teacher back into a student.

Lana’s interest in education began when she was in elementary school. She loved reading and never passed an opportunity to visit books in the library. She remembers setting up a “school” at home in her living room, and how her grandfather lovingly subjected himself to her improvised reading lessons. Lana’s early interest in teaching and learning became her professional work. With an interest in multidisciplinary, integrated approaches to education and health, she taught in a residential treatment program, psychiatric hospital, and a center for children and adults with medically complex, developmental and intellectual disabilities.

Lana continued her work in education and obtained advanced degrees in special education and research. She taught pre-service teachers at the undergraduate and graduate level, consulted with state, local, and private agencies on a variety of projects, and presented extensively about how to apply research-based, instructional strategies in the classroom. Lana also served as principal investigator on a series of federally-funded research studies on comprehension where she and her colleagues developed a widely-used intervention and curriculum for struggling readers.

A 2006 tennis match led to a ruptured gastrocnemius muscle, dozens of visits to medical professionals, and—four years later—a CRPS diagnosis. As someone dedicated to “what the research says” about best practices in education, she was overwhelmed by the lack of research for CRPS at the time. She was haunted by what seemed missing, and the research questions that weren’t being asked. Struggling to sort through what was known and not known, Lana became a student again as she applied her interest in education to her experience with CRPS. CRPS became an excuse, of sorts, to return to the library (or, more frequently these days, Amazon.com) to read what she could find on pain management, treatment, and mindful living. Those hours of study culminated in the development of her personal CRPS management curriculum. Because best practice suggests an individualized, multi-disciplinary approach to CRPS treatment, some of the main components of Lana’s management have included:

collaboration with her medical team on appropriate interventions,
on-going work with a personal trainer to design and implement a physical training program, (e.g., the application of graded motor imagery strategies and principles of explicit instruction—including the use of models/demonstrations, scaffolding, and strategic integration), and
the use of a variety of self-management strategies to support daily living (e.g., the University of Massachusetts Medical Center’s Mindfulness-based Stress Reduction program by Jon Kabat-Zinn and Open-focused Training by Les Fehmi and Jim Robbins).

Lana currently works part time from her home in Alexandria, Virginia as a Research Associate and Curriculum Developer with the Center on Teaching and Learning at the University of Oregon. She continues her consultation with local and state education agencies and loves working with in-service teachers. In honor of CRPS Awareness Month, Lana is excited to share some lessons learned and a few strategies from her CRPS management toolkit:

My Self-Management Toolkit
Lana Edwards SantoroAs those with a CRPS diagnosis know, nothing prepares you for CRPS. When I first received my diagnosis, I looked everywhere for a roadmap. I searched all kinds of sources for information that would tell me what to do, what steps to take. I knew that I didn’t want to just live with CRPS. I wanted to be living with CRPS in a full, active way–regardless of whether I was using a wheelchair, crutches, walking without assistance, sitting in a hospital waiting room, spending time in bed recovering from a flare, or enjoying activities with my family.I’ve often viewed my professional life with two distinct emphases: practitioner and researcher. In many ways, my experience has required me to draw fully from both–the research and the application to practice. Here are a few of the “research-to-practice” lessons I’ve discovered on my CRPS journey:

1. Take a research-based approach to CRPS management. To the greatest extent possible, use research on CRPS to guide treatment and self-management decisions. Since research on CRPS continues to evolve, I admit to shamelessly borrowing research-based strategies from other related disciplines. For example, while not entirely specific to a CRPS population, there are research-based strategies that can be applied and adapted from the literature on chronic pain and illness. I’ve also incorporated research on resilience, coping, mindfulness, healing spaces, special education, and neuroplasticity to inform how I approach self-management.
2. Find something interesting that you can apply to your CRPS management and learn about it (. . .then share what you’re learning). Approaching CRPS from a learning perspective has helped me tremendously. While I’m interested in topics related to education and psychology, you may have other interests, and experiences, in other disciplines that can help you (and the rest of us) learn more about how to interact with CRPS. Therefore, start your own independent study. Whether you want to explore more about how people with chronic pain are represented in film, how technology applications can improve the lives of people with disabilities, how an interest in cooking could be applied to the development of anti-inflammatory recipes and the preparation of delicious, nutritious meals, or how a sports obsession could be transformed into documenting the lives of athletes who have overcome personal challenges. The key is: just do it!

Also, think about how a favorite hobby, like gardening, woodworking, word study, listening to music (without other distractions), or photography, could be used to help with coping. In other words, give yourself a learning project, see how it might apply to living with CRPS, and “geek-out.” (Here’s a note that my reading comprehension research-self would like to share: This self-study approach to CRPS builds comprehension and can add layers of meaning to your CRPS experience. Our ability to cope with difficult challenges often improves when we find ways to connect more meaningfully.)

3. Create your own individualized action plan. Create an action plan just like someone in education might develop an individualized education plan (IEP) for a student receiving special education. Your action plan should be dynamic and evolving. Around the time of my diagnosis, my action plan initially focused on medical intervention and the physical training work required to help me transition from wheelchair use to walking. Currently, my action plan has more of a functional restoration focus and emphasizes activities of daily living (I admit that if I take the time to write things down, I’m more likely to follow my plan and even meet some of my envisioned goals).

4. Pay attention to pain like you are carefully reading a complex text. I find working with pain is a little like reading comprehension. It requires ongoing attention and interaction. I’ve learned that paying attention to subtle details, hard-to-ignore themes, and changes in what the “pain story” communicates overtime, helps me manage and work with pain (somewhat) better. Overall, try to understand and get to know your pain; specifically, learn the micro- or macro-level patterns that cycle through your own “text.”

5. To the greatest extent possible, get moving, even if your path toward movement is infinitesimally slow. Even though it might feel counterintuitive from the body’s chronic pain perspective, working on movement has an eventual pain management payoff. Of course, there are many other benefits to movement too.

6. View CRPS challenges from different perspectives. My photography hobby has taught me the important practice of perspective shifting and re-framing the same shot from different angles. Re-framing allowed me to experience the joy of movement in my wheelchair. As I continue to improve my walking skills, I’ve yet to experience the fluidity, agility, and opportunities for self-initiated acceleration and speed that I learned to appreciate when I went wheeling.

7. Incorporate less as more when scheduling. Many others living with CRPS discuss the importance of pacing and careful scheduling too. I’ll add my voice to this chorus. Like many of you, I admit I can be an over-doer. Learning to be mindful of my body, and the potential subtilties and dynamics of underlying pain (see #3), help me pace within my optimal range of functioning.

8. Change. One of my hardest lessons was learning that I had to open to how CRPS would change my life. When I figured out that I couldn’t continue to do the same things in the same way (ranging from small daily tasks to my job in academia), I started to make the time consuming, and often very difficult, “all in” changes to my schedule and daily routines. When I started to make these changes, and adhered to my new routines, I discovered gradual improvements in my overall functioning. I also learned the profound lesson that change often signals that you’re heading on the path to acceptance.

9. Return to “the library,” whether brick-and-mortar or virtual, and use stories of hope to help chart your CRPS journey. When I first received my CRPS diagnosis, I read, watched, and listened to every story of hope I could get my hands on. I wanted to know how other people lived with CRPS, and how others with chronic illness faced challenges and celebrated life. What I learned from other stories of hope gave me my roadmap for how I wanted to approach life with CRPS. In their wide-ranging perspectives and diversity, these stories are great teachers for how to live resiliently (as a start, read any Linda Lang essay written for RSDSA, if you haven’t already).

10. While I try to take a proactive, positive approach to my self-management, the reality of living with CRPS dictates that pain is an inescapable part of the trip. Simply put, despite Lessons #1-9, we know a CRPS journey can be miserable, exhaustingly disheartening, and even tragic. Just like any hero’s journey, there’s time spent with darkness. Therefore, look for the darkness, pain, and struggle in stories of hope -those themes can equally inform your roadmap. To me, stories of hope aren’t always glossy, or about a victory, or a cure in the traditional sense. Rather, the best stories often highlight the simultaneous acceptance of limitations and determination to overcome them. These narratives are fundamentally about the struggles and setbacks that lead to compassion, enrichment, and complex perspectives. I especially look to others who were diagnosed with CRPS at earlier times when less was known about treatment. Here I find hope through remarkable courage and raw authenticity.

CRPS Awareness Day 7: Ketamine Treatment Information

November 7, 2017

Written by Guest Blogger Allison Wells, MD

Dr. Wells shares her take on ketamine treatment information for CRPS. She offers insight to what she thinks works best, the effects CRPS can have on a person, and the impact of infusions. Please note that this is Dr. Wells’ opinion and we advise that all members of the CRPS community consult with their doctor about the best options for them.

CRPS / RSD can cause intense, chronic pain and can be debilitating. Many CRPS patients have lost jobs, friends and family relationships due to their illness. Many have been forced to give up activities they love and most also suffer with anxiety and depression related to their condition. Physicians and researchers are still puzzled by what causes this disease and how to treat it. There are relatively few treatments that successfully help alleviate the pain.

As of right now, there is no apparent cure – sustained relief can be hard to find. Fortunately, ketamine can provide fast relief for many patients and an ongoing series of IV ketamine infusion treatments can provide sustained relief in many cases.

We don’t entirely know how ketamine infusions help relieve pain for many suffering from CRPS. The current hypothesis is that the disease is principally neuropathic, or caused by the neurons in the nervous system themselves. CRPS may decrease the threshold that would prevent a pain signal from being sent and therefore increase the pain signals sent by the nerves. Scientists believe that ketamine treatments may act on the neurons to reduce nerve self-stimulation and to increase the threshold for sending signals – which means less pain signals sent.

The FDA indication for ketamine is for use as an anesthetic agent. But there are substantial numbers of clinical trials and case studies showing that CRPS patients experience greatly reduced pain scores after treatment with ketamine. At Wells Medicine we see that after a short series of 2 or 3 four-hour infusions, patients often describe a reduction of pain symptoms from an 8 out of 10 to a 2 or 3 out of 10. Patients can often maintain this difference for years with regular boosters. Most of our patients have decreased or stopped their narcotic usage and many have regained the ability to have meaningful hobbies or careers.

We work with our patients to determine treatments and frequencies that will work best for them. For chronic pain conditions, like CRPS, we often see patients for four-hour high-dose infusions on an as-needed basis. Treatment regimens can vary, but a common course of treatments may be two to three treatments to begin with and then one or two treatments every other month to manage symptoms. We have some patients who are maintaining their results with as little as a 1-hour infusion every 8 weeks, although this is after many years of treatment. We work with patients to tailor the treatments to their needs and their response to the treatments.

Sometimes patients will schedule a 1-hour infusion to see if their pain is responsive to ketamine. This is definitely a more cost-effective option, but most patients will not achieve sustained and dramatic improvements with the shorter infusions. Generally, the higher the dose and the longer the infusion, or the more frequent the infusions, the greater the pain relief and the longer the duration of pain relief. In general, studies to date appear to show, and clinical results appear to support, that for treating CRPS the more ketamine given the more effective the treatment. The limiting factor really becomes the time and expense.

During a high dose infusion – around 2mg/kg/hr – the patient will be very sleepy and may even need oxygen supplementation. Most patients will require medication for nausea and also for sedation to prevent odd dreams or hallucinations while receiving the ketamine. We manage the side effects and monitor patients carefully during the infusions. Ketamine is a very safe drug when used properly, but should be administered by appropriate professionals with relevant training, experience and equipment – in the state of Texas ketamine infusions can only legally be administered by a physician or a nurse anesthetist.

At Wells Medicine our treatments are administered on an out-patient basis in private rooms at our office in West Houston personally by a physician – a board-certified, licensed anesthesiologist. We strive to provide the best possible evidence-based and physician-administered medicine.

For pain infusions we provide one-hour infusions or four-hour high-dose infusions. We provide infusions on Wednesdays and Saturdays and we typically have availability within a week to two weeks of a request for scheduling. The longer infusions – which require patients to spend 6 or 7 hours in the office – can require scheduling further out.

While we continue to work towards accepting insurance, insurance companies do not reliably reimburse for the full cost of the treatments and we do not accept insurance – patients may pay with cash and major credit cards at the time of treatment. We provide documentation for patients who wish to pursue reimbursement directly from their insurers. UHC and Cigna have reimbursed some patients, Aetna and BCBS have been more difficult.

Please contact us at any time if you would like to discuss treatments or have any questions. More information is also available at wellsmedicine.com.

CRPS is a terrible condition. Ketamine probably can’t cure this disease- it is still only a palliative treatment as far as we know, but with many more good days than bad, patients can start to reclaim their lives, careers, interests, and relationships.

About Me, Dr Allison Wells: I started Wells Medicine to provide infusion therapies for depression, PTSD, CRPS, neuropathic pain conditions and more – focused on ketamine infusion therapy and focused on Houston and surrounding areas of Texas. I am a licensed, board-certified anesthesiologist. I am passionate about being a partner in helping people feel their best with evidence-based medicine.

An Important Disclaimer: The information in this and other blog posts represents my informed opinion or the opinion of others, and does not constitute medical advice and should not be relied upon to make decisions regarding medical care. To address the specific details of your medical conditions and treatments please speak with your doctors.

The Top 10 Shoe Brands for CRPS Warriors

October 10, 2017

Written by Guest Blogger Ashley Epping

I developed CRPS at 12 years old in my left wrist. After being diagnosed, I spent the next six years dancing competitively, staying at the Pediatric Cleveland Clinic, creating art, traveling abroad and applying to colleges. I never once thought about my shoe choice because I didn’t need to. Though I would always see others in my support groups posting photos of shoes that worked for them, and to be honest most were not versatile enough to wear for specific occasions such as professional or dressy settings. For the first six years my pain was only located in my upper body, but in the following years the pain spread to the lower regions. For the first time in my life, I was not able to purchase shoes based on the fact that they were cute. I am a 22 year old business student, living in New York City. The typical CRPS friendly shoes were not an option for me.

I spent the next few months observing and researching shoes that could serve all purposes. I needed shoes that were equipped for walking, standing, exercising, and were standard for business, social, and/or dressy occasions. All the while serving relief for CRPS symptoms. I needed shoes that could handle swelling, hyper sensitivity, poor balance and support painful legs.

I was successful in finding shoes that fit my lifestyle, and I figure that others may have the same issues I did when looking for shoes. I have put together a list of my findings for all CRPS sufferers who are in need of some kicks.

1. Teva
Teva sells an arrangement of sandals, sneakers and boots, but their most accommodating shoe for swollen and sensitive feet are their adjustable strap sandals. The sandals adjust at the ankle and around the ball of the foot to create the perfect fit everyday no matter the severity of symptoms.

2. Eurosoft
Eurosoft is made up of mostly fashion forward products; shoes that are meant to be worn for style, while also keeping you comfortable throughout the day. The shoes are created with padding in the sole and arch supportive. They offer casual open slip ons for day to day wear, and also offer wedges for a more fancy occasion. Eurosoft is sold by wholesalers, but the most convenient locations are Amazon, DSW and [sic] JCPenny’s.

3. Sketchers
Sketchers offer boots and sandals, but their sneakers are worn most often for CRPS. Sketcher’s sneakers offer light weight technology, air-cooled memory foam, and flexible soles.

4. Christian Dietz
This brand is on the [sic] pricy side, but if you are looking to make an investment these shoes will last you years. Their products range from sneakers to dress wear to orthopedics; allowing all different accommodations. These shoes are incredibly fit for people who wear braces. Christian Dietz is sold through the store Enslow, which has been serving the medical community since 1909.

5. New Balance
New balance is a commercial sneaker brand, but has recently come out with NBRxPerformance Foot Health products. These sneakers are categorized by running, walking and insole options. New Balance connects doctor’s recommendations to certified retail partners and trained fit specialists to fit you with the right sneaker.

6. Dankso
Dankso has a wide range of products, but the most supportive and specialized shoe for CRPS purposes is their clog model. Though these shoes are not highly recommended for walking long distances, they are one of the top shoe brands for people who need to stand for long periods of time.

7. Birkenstock
The most CRPS friendly products from Birkenstock’s are the slip on Arizona sandals, and the slip on Boston clogs. These shoes are made to be adjustable and roomy for cozy socks, and/or in our case for swollen, sensitive feet. These products tend to be a little pricy, but they are real leather, which does last for a very long time.

8. Ecco
Ecco offers a variety of products, but the best ones for sensitive feet are their slip on booties, flats, and casual sneakers. This brand has created a feature using premium materials plus dynamic comfort. They use “next generation platform technology” which is inspired by nature and old world leather. In case a fancy occasion arises they also offer low heel pumps with the same comfort technology.

9. Adidas
Adidas is a commercial brand, but they have come out with their Ultra Boost technology, which are designed to propel you forward while maintaining your stability. They are engineered to expand with your foot and avoid irritation, and come with rubber soles that have extraordinary grip for wet and dry surfaces. These sneakers are the favorable choice for the gym or physical therapy.

10. Naturalizer
Naturalizer offers incredible options for professional shoes; if you are looking for a shoe with a small lift, that are sleek, durable for walking and standing, than their a top choice. Their prices have a wide range, but lower prices can be found through their retailers such as Nordstrom Rack and DSW.

How CRPS is Like Pennywise and “IT” – What We Can Learn

September 19, 2017

Written by Samantha Anderson

To compare CRPS to one of the biggest horror re-makes of this year, “IT,” seems like a bold move. But, let’s say CRPS is Pennywise. How can we find similarities?

When the remake of Stephen King’s “IT” came out, I wanted absolutely nothing to do with it. Horror movies are not my number one go to, at least not any more. Last week, I was having a particularly down day, so my husband suggested date night. We work opposite schedules, so this made me incredibly happy. We decided a movie would probably be for the best, but then the only movie we “mutually” wanted to see was “IT.” Yes, readers, I may have fudged the truth a little bit, as I did not want to sacrifice date night.

We went to the theater, which has brand new, fully reclining seats so it is super comfy (bonus). I was a little anxious going into the movie, but I liked horror/thriller movies at one point, so I thought I could do it. I’m going to say that I saw a grand total of 7 minutes of the 2 hour and 20-minute movie. I hid behind my Snowcaps box for a majority of the film. My husband felt awful that I was so scared. But as I kept saying, “It’s date night, this is fun, woooo!” Although, I am sure that got less enthusiastic as the movie dragged on. I watched any part that was not gory or particularly freaky and I heard everything.

As I was sitting here, trying to decide what to write about this week, I realized that CRPS can be a lot like “IT.” While comparing Complex Regional Pain Syndrome to a really bizarre horror movie seems far-fetched, hear me out. The more I think about it, the more I am amazed. Some spoilers ahead for those that have not seen the movie or read the book!

There can be a pattern. For me, I live with the pain every day, but flare ups are particularly bad. While Pennywise and all of his crazy antics haunted the town every couple decades, it took the children from this movie time to determine the pattern. Seemingly enough, no one had determined this pattern before, or at least they had not documented it. For me, my pain tends to come in patterns. Certain times of the year are bad for me, like changes of season or storms. I also tend to flare after my clumsy self gets some kind of injury. Establishing a pattern gives a certain edge to all of this. Having more knowledge can make things less scary, as you can determine preventative measures or ways to try to avoid triggers/cope with flares. That is similar to what the kids did. They found the pattern and determined that they had to stop Pennywise before the cycle started again, therefore preventing casualties in the future.

Do not be afraid of the entity. I am not afraid of clowns. Pennywise himself does not scare me. He is just an entity that causes mayhem. His appearance and name do not make me shutter. I am not afraid of CRPS either. I know what it does to my body and to the bodies of so many. I know the mayhem it causes in myself and my peers in pain. But CRPS will not scare me into submission. I will not just accept it and let it control me. I will fight back against it. Whether I am raising awareness or funds, I will fight back. When I flare, I cannot let it take over. Pain is scary, the unknown is scary, but CRPS and Pennywise can float away together. I will not let these entities that think they are so scary and intimidating impact my life like that.

Children are our future. In the movie, the children are the ones that are realizing what is going on. They are seeing all of their fears come to life as a part of Pennywise’s plan. But they come together to strategize on how to beat Pennywise and save other kids, present and future, from his tactics. Today, we have to realize that, in the CRPS community, children are our future as well. Kids are getting diagnosed with CRPS younger and younger. These kids come together at camps and online to support each other and to show chronic pain who is the boss (them). The Pediatric Pain Camp is a prime example of this. These kids discuss becoming doctors, nurses, physical therapists, and other medical professionals or advocates to shed light on CRPS. They are looking for solutions that the adults may not have thought of yet or that have been thought of, but not acted on yet. They are giving us hope that we will all defeat our personal Pennywise, or CRPS. We have some incredible kids that want to help us all.

Noise can be the scariest part. As I said, during the movie, I hid behind a box of Snowcaps. There were quite a few parts of the movie (that I wasn’t watching) when my anxiety started rising to a level I could not explain. The score from the movie was really getting to me. There was a solid few minutes where the “anticipation” sound was so loud, that even while I was looking away I could feel the anxiety. I looked to my husband to tell him my anxiety was up and noticed he was already looking at me since he could feel the vibration through the floor and knew that it could aggravate my pain. Sometimes, it is our triggers that can be the scariest. Whether it is loud noises, storms, stress, or an additional injury, these are the things that can scare us and cause us the most pain. Anticipating all of this can be just as bad. At least life does not come with an anticipation soundtrack. Yikes!

Our own personal fears are what get us. Pennywise feeds off the fear of children. He is able to make these children see their biggest fears come to life in order to feed off of them more. Our own fears can be worse than the CRPS. Being afraid of what our friends and family think can prevent us from interacting with them. Being afraid of our futures can send us in to a spiral of thoughts of feeling stuck or lost. Being afraid of the pain can make it so we avoid doing anything at all. All of these fears and stresses can trigger our pain. By not submitting to all of our fears, we can save ourselves some pain. While no one should ever make your feelings seem invalid, we have to remember that we are so much stronger than our fears. There is always a way to overcome them. There is always hope.

In the end, the overall message is that when we come together to fight “evil,” we truly can win. So, when we all come together to raise awareness for CRPS/RSD, raise funds for research, and support each other, we are slowly defeating the evil we experience every day. We have that power.

Slowing Down with CRPS – How To Say No While Staying Happy

September 12, 2017

Written by Samantha Anderson

I’ve lived with CRPS for 11 out of my 24 years on this planet. I’ve always been a type-A personality that hates turning down a job or a favor for anyone. This has gotten me into a pickle. Why is slowing down important?

Based on personal experience, and observation of the CRPS community for over a decade, there is one thing that so many of us have in common. We all struggle with slowing down. What do I mean by slowing down? I mean leaving work or cutting back hours, not making cupcakes for your niece’s birthday party, staying home instead of going out, and the like.

Over the years, I have noticed that I have a problem with saying no. Whether it is taking on extra assignments, volunteering to help watch a younger family member, making extra pies and baked goods around the holidays- I just cannot seem to say no. Why do I have such a problem saying no? To me, for a long time, it was like I was letting CRPS win. By baking those cupcakes, making those pies, and working extra hard, I thought I was telling CRPS to “Take that!” I thought it would make me everyone else’s “normal.” But, my body was saying to CRPS: “I’m going to exhaust myself and let you come into my life a little more.” It led to more pain, stress, frustration, and depression than I would like to admit. I would get frustrated that people forgot I was living with CRPS while I was trying to forget it myself. Pushing too much was making me sick. That’s a problem. What was I thinking?

Here’s where things get complicated. A few months back, I was discussing limits with others. We have to push ourselves in order to get things done, but it is possible to push too hard. Where do we find the balance? How can we find the balance before we hit our frustration and depression points? That is what we should figure out. This is what I have come to… Pain changes daily. Some days my pain is way higher than other days. If I am having a bad pain day, I need to do what I can to try to make myself comfortable. That has to be the first priority. If I am able to get comfortable, maybe I can take on something I can do from my couch or my bed. But if not, I have to take that as a day for myself. On my lower pain days, I have to consider what my options are. Do I make 70 cupcakes now and chance the use of my hand for a few days and then go to the birthday party? Normally, I do that. But now, I can try to recruit someone to help me so it is not as taxing on my CRPS. But I’ll never miss a birthday party. Do I take on extra projects and stay awake through the night trying to figure out how to get them done? Not ideally.

So, how do my experiences help you out? We have to help each other slow down. There are always ways to still do things while slowing down. Whether you recruit someone to help you finish something, start saying no more, or plan out your time to make sure you have time to recover from any outing. You can do it. I know how much I hate saying no, likely like most of you. But we have to say no to doing too much and yes to helping ourselves and making sure that we are as happy as we can be. If we do not start saying no to some things, we will get overwhelmed and our CRPS pain can increase. We can live fulfilling lives without taking on everything that is offered to us. I keep a check list of daily activities I need to do including things to do for work, for myself, for my dog, for the house, etc. If the list gets too full, I see what I can move to tomorrow. I am only human, you are only human. We may be CRPS superheroes to many, but not saying no is our kryptonite.

To remember this, I have started to post messages to a chalk board/cork board every morning or before I go to bed so I see it in the morning. I write friendly reminders to myself and encourage my husband to help me with some of these memos. Today, I have on my board: “Family always comes first” on a sticky note on my laptop. On my chalk board, it says: “You are only one person. Strong, but one person.” Conveniently, I just received a text from my mom that reminded me that I have been pushing myself and that I need to remember to take care of myself and do what I can. So, now I will go about my day remembering all of that. I will go take care of my cousins after work, but for now I’m going to check some things off my check list and put on some Ed Sheeran to get me through this day. CRPS, I’m not letting you win in any way today.

CRPS From An Outside Perspective – Interview With a Husband

August 15, 2017

By Samantha Anderson, Special Events Coordinator

After several requests for my husband and I to give a bit of our story and let everyone know how things work with us, I decided to interview him to find out what he thinks about CRPS/RSD as a person that lives with it daily without physically experiencing it.

10 years ago, I started dating my now husband. We were each 14 years old. This was less than a year after my CRPS/RSD diagnosis. As a matter of fact, I was still on crutches when I started dating the boy with the blue mohawk. At that point, I didn’t know the extent that CRPS/RSD would actually impact my life. I know the doctors told me I’d never walk again, but my physical therapist was determined to get me there. Now that he’s stuck with me for all of eternity (or so I tell him every day), I figured I’d ask a few questions about what it was like learning about all of this CRPS nonsense as I did, while being able to add my own commentary. We have received a lot of requests for advice or for a story on how we “make this work,” so here we go. with CRPS from an outside perspective [Note: This article is not meant to say that it is more difficult to love someone with CRPS, or to say we are not as worthy of love. It is to simply get the mindset and thought process of a significant other as they see all of this [happening to a loved one].

Samantha: Okay, so you knew I was at least some form of injured when we started dating Do you remember me telling you about RSD (now CRPS) at any point of the beginning of our relationship?

Aaron: Yeah, I think so. I kind of had no choice, I’m pretty sure you had crutches at that point. But I don’t remember you specifically saying “Oh, I have RSD.”

S: I didn’t talk too much about CRPS/RSD then because I was too preoccupied with trying to figure out what dating was. Ha! Do you think I have changed in any way now that I openly discuss the diagnosis?

A: I mean, yeah probably. With me, you realized I wasn’t going anywhere after you told me. You’re much calmer when you explain it to people now, although I’m sure you’re sick of the question. [Sammie’s note: I’m never sick of the question. I’d rather educate people than let them make assumptions] Back then, you didn’t know much about it and would get overwhelmed. Now, you just answer peoples’ questions and try to educate them.

S: I remember a few years into us dating, when my CRPS started to spread, you looked everything up with your sister to try to learn more. What do you remember about that?

A: I remember being on the RSDSA site. To be honest, it scared me. I was thinking everything would just be a mess forever and that the actual flare would last forever. That was overwhelming. But I wanted to know what I could do to help, even though there wasn’t anything specifically I could do other than support you. My sister was equally as overwhelmed. Seeing that it could last the rest of your life was scary to teenage me. [Sammie’s Note: I have gotten to manageable levels of pain, however I do get significant pain flares that set me back. Ones that I didn’t even anticipate as a teenager].

S: Through this entire process, what has been the most difficult part of dating me?

A: Seeing you hurt or sad is probably the worst, knowing there isn’t much I can do at all. I can deal with everything else, as long as I have you. There isn’t anything that we can’t get through.

S: What has being with a physically disabled person taught you more about the world or about disabilities as a whole?

A: People can be scummy. They don’t have respect for others. It gets really annoying when people just don’t care when we go out when you’re flaring and they step in front of your wheelchair or try to move you. It makes my blood boil. Don’t get me wrong, there are people with good intentions, but the bad sticks out so much more. You don’t tend to notice the good ones. You remember the people that let the door close, let the elevator go, shoved into the wheelchair, and things like that. [Sammie’s Note: The video clip below, from the TV show “Speechless,” is something that happened to me in a Yankee Candle one day].

S: What is something that you do to handle the stress and pressure that I put on you? How do you unwind so you don’t breakdown?

A: Usually video games. That takes me to another world. But, I found my purpose in life. My goal in life is to make your life better. Whatever I can do to help you is my end goal and makes me feel better. I’m not “dealing” with it, it’s called love. Knowing I’m even just making you smile for a moment is enough, truly. But everyone needs an out. A healthy out. That’s why I play video games. And that’s why I go fishing. Even if you don’t believe when I caught a huge fish.

S: Haha. I always believe you. What have you found the scariest part of CRPS to be?

A: Complete lack of control. Like, yeah some of the medicines help you not flare up, but if you stub your toe, who knows if you’ll be able to walk for the next month. [Sammie Note: So, I know I’m pretty fragile and I forget that, plus my toe is a magnet for wall corners, sorry Aaron!]

S: Based on what you’ve seen from me, how would you describe CRPS now?

A: I usually just explain it as a nerve condition. I could be wrong, but I say imagine if you broke your arm and your body reacts to that like there’s a problem. But with RSD, it just does that even though there isn’t necessarily a real issue. Your body is treating you like you’re broken and it causes your brain receptors to think there’s pain. It’s all overreacting. It’s like an allergy to pain, but neurological.

S: What would you say to all of the significant others of people with CRPS out there?

A: If you love someone, you should be willing to do whatever you can. Even when there’s nothing you can do, you should try to make them smile. However, if you can’t stand the heat, get out of the kitchen. Don’t leave someone hanging on for your own selfish reasons, just to leave them high and dry. Trust me, their heat is much worse than the heat in your kitchen.

What I learned from having this discussion with my husband is that he’s in this as much as I am. I understand why he tries to play defense when we’re out in public and someone gets too close to my left side. I understand why he panics when I faint and fall. While he doesn’t experience the physical pain, he experiences a lot of the emotional pain, especially since he is so eager to help. One thing that we’ve had to really focus on is that he cannot compare his pain to my pain. Sometimes, he doesn’t speak up when he’s in pain because he feels as though it is nothing compared to what I live with. But pain is relative to each individual. He’s allowed to be in pain and not face judgment for saying he is. To answer the question about finding a significant other that fights instead of flies, I’d just say that you have to dive into it. Date people, but be open with them. If they run on the first date, they weren’t worth your time. There are some fantastic men and women out there that are willing to join your team. Anyone that does not want to stick it out misses out on how fantastic you are.

A Thorn In the Flesh – A Chronic Pain Journey

May 9, 2017

Written by Guest Blogger Gabe King

This blog was originally featured on Gabe King’s blog site Treasures on the Sand. This blog was submitted to us by Mr. King with full permission to share his chronic pain journey.

For many of us with chronic pain, we can only remember suffering. It can be very hard to think of the times that were pain-free, living our lives like normal human beings. However, this is not the path Our Heavenly Father has in store for us, for He has a greater purpose at hand. Though this is the case, it can still be a difficult journey, walking through life with what the apostle Paul referred to as a “thorn in the flesh.”

I wanted to share with you my own journey, from its early beginnings to the present. I hope that you can find encouragement from it, no matter what stage of life you are in right now.

In October of 2013, while at a fencing practice, I popped my back during a routine exercise, causing my back to ache for at least a week. Eventually, the pain subsided, so we thought nothing of it.

From November to December, while in the midst of performing as “Scrooge” in A Christmas Carol at our local community theatre, I contracted two respiratory viruses back-to-back, causing immense pain in my chest. I went to our family physician, who, after finding nothing on my chest x-ray, diagnosed it as costochondritis, gave me an inhaler and Z-pac, and sent me on my way. The chest pain continued, along with fatigue from constantly being in pain.

January of 2014, the pain decreased and I began to feel better. This was not to last,
however, and by February my pain was back with a vengeance. We returned to our family physician. This time, he ran blood tests and gave me 1000mg of Naproxen to take once a day. Finding nothing on the tests and having no relief from the pain, I was once again diagnosed with costochondritis and told to go to the ER if it did not improve. In March, as the pain intensified, we went to an ER and had a chest x-ray and blood work done. Both came back clear…again, and we were back to square one.

April added a new layer to the mystery as my eye became inflamed for several weeks. We tried treating with redness eye drops, Neosporin drops, and allergy medicine. Nothing touched it. We got in with a pediatric ophthalmologist. She believed there was a connection between the chest pain and the eye inflammation, gave us prednisone drops and pills to see if they helped, ordered full blood work to be done, and referred us to a pediatric rheumatologist. The blood work, of course, came back normal, so we waited for our appointment with the rheumatologist.

In May, while waiting to get in with the pediatric rheumatologist, we went to a regular rheumatologist at UVA who believed that it was not a rheumatoid issue, but a muscular one, and decided to give me twenty cortisone shots in my chest wall. Needless to say, it was not a pleasant process, nor did it have its intended effect of relieving my pain. In fact, not long after, the pain began to spread from my chest to both my legs and arms, making it harder to participate in daily activities.

A few weeks later, we had our appointment with the rheumatologist. This is where I was first diagnosed with RND, Reflex Neurovascular Dystrophy. (RSDSA Note: RND and AMPS are used as names for pediatric CRPS). After running another batch of tests to prove his diagnosis, he gave us information on a Children’s Hospital in Pittsburgh that specialized in treating RND and sent us on our merry way. We never heard from him again nor were we able to get in touch with him.

We researched Pittsburgh and found they treated RND with intense physical therapy, along with psychological therapy. It sounded promising, but as we began the process to get scheduled with them, we looked deeper to find that they had a rather large percentage of patients who, within a year or two, had a recurrence of the RND. Though the possibility of being free of pain for a short time was great to hear, the fact that it would be short-lived struck me like a dagger in the back. I wanted to be completely cured, not halfway cured.

So, during most of the Summer of 2014, we sought out other means, from aqua therapy to a tens unit, all to no avail. We even went to a pediatric neurologist, who turned me away because he “couldn’t help,” pretty much saying it was all in my head.

Finally, in the middle of June, I gave it all to my Father, and He gave me a reprieve and allowed me a full month and a half without pain. Though I may not have known why He decided to grant me this gift, I understand now that it wasn’t a gift, but a message; a message that would take me two more years to figure out.

That fall, the pain reared its ugly head again, radiating out from my chest to my back, arms, legs, and hip. At this point, I was working part-time at a restaurant in town. I had to quit that job due to the physical limitations from my intense pain making me unable to continue.

Over the course of 2015, I had to limit most of what I loved to do, acting, fencing, singing, and other extra-curricular activities, because the pain was becoming unbearable to the point I was having a hard time getting out of bed. We tried everything from Lyrica to Maxalt. The only medication we found that helped was Cymbalta, which mainly allowed me to sleep through the night without waking up in excruciating pain. When the pain would get severe, I would take a Hydrocodone, which only knocked me out, but it allowed me to rest for a short time.

It was at the beginning of 2016 that it began to up the ante, from the death of my grandfather to living through an EF-3 tornado to our eventual move to North Carolina in the fall. The stress of all those combined caused my pain syndrome to spin out of control. I was taking classes online at the community college nearby and had the hardest time passing with good grades because I could hardly focus with all the pain.

When we had officially settled in NC, we set up an appointment with a nearby neurologist, who was highly recommended by members of our church for persevering to find answers. He diagnosed me with AMPS (Amplified Musculoskeletal Pain Syndrome, for more info, click here) and, after poking and prodding me, decided there was nothing he could do and left me to fend for myself.

This was the final straw for me. I had finally had enough with doctors and medications, and finally came to grips with the fact that my Heavenly Father has allowed me to bear this burden for a greater purpose. And so, that brings us to the present, where I currently am endeavoring to go through life with this “thorn in the flesh.” Yes, I may have my bad days, but I still strive to fight this vicious disease and glorify my Father through the path He has in store for me.

I hope and pray that you can say the same.

Managing RSD/CRPS As A Chronic Illness from a CRPS Warrior

May 2, 2017

Written by Guest Blogger Emily S. Nunez

Emily has been living with CRPS/RSD and learning how to best manage it. Here, she includes her tips and tricks to control your CRPS/RSD as a chronic illness. She finds the following tips helpful for her own pain.

The reality of living with RSD/CRPS is that it is a lifelong chronic illness, which requires management and attention to avoid exacerbating symptoms. I consider myself very fortunate to have most of my RSD symptoms under control at the moment. But I do get flare ups of pain and swelling from time to time, and I’m always aware of how my affected foot is feeling in order to prevent symptoms from getting out of control. My doctor has stressed that once RSD has surfaced in the body, that it could come back at any time in the event of another injury or major stressor. That being said, there is a lot we as RSD patients need to do and be aware of in order to manage RSD as a chronic illness and to prevent flares from occurring. When dealing with a disorder that can feel so unpredictable and out of control, let’s focus on the things that we can control to keep our symptoms at bay:

1.) Avoid Common Food Triggers

Everyone’s body reacts to various foods differently, and there is no particular “RSD Diet” to adhere to. But it would be wise to start paying attention to how foods are impacting your pain levels. Keeping a diary of your symptoms and what you’ve eaten can be extremely helpful in looking for patterns of food-related inflammation and pain. Foods that tend to cause an increase in inflammation are: sugary foods, alcohol, refined grains, and processed meats. Try to keep these foods to a minimum and incorporate more fresh fruits, vegetables, and proteins into your diet as much as possible. Diet is an integral part of good health for everyone, but is especially so in those of us with chronic illness.

2.) Keep Stress to a Minimum

Stress is a part of life, and is impossible to avoid completely. But be aware of your stress level in order to prevent it from getting too high and causing an increase in pain. Stress is known to be one of the main triggers for RSD flares, so it’s important to use stress-reduction techniques when you feel your stress level creeping upward. Meditating, talking with a friend, exercising, watching a funny movie, or writing in a journal are a few ways you can help mitigate stress. It’s also important to surround yourself with positive and supportive people to help keep your stress level as low as possible.

3.) Exercise the Affected Limb/Body Part (If Possible)

Keeping the affected body part active can be a very tricky thing for many RSD patients. If your case of RSD is very severe, you might not be able to tolerate moving or even touching your painful area very much. When my RSD pain was at its worst, I could not stand even a bed sheet touching my foot. When my doctor told me to start exercising my foot as much as possible, I first thought it would be impossible. But my doctor explained that continuing to immobilize the limb would cause further disease progression and loss of bone density. So, at first, I slowly started trying to move my toes. Then I worked on rotating my ankle. Then I worked up to walking down my driveway. Every week for several months, I made slight increases to the movement of my foot. While exercise initially caused a sharp increase in pain, I found that the more I stuck with it my pain started decreasing. Now I go for a walk daily to keep my symptoms minimal. If I go a couple days without exercising my foot, I get a big increase in pain. So, if you’re able to tolerate some movement, incorporate exercise into your daily treatment plan. Work at movement consistently, and increase exercise only in small increments. Exercise gives us so many benefits, aside from pain reduction, including increased self-confidence, elevated mood, lower blood pressure, and increase in bone density. Try your best to use and move your affected body part as normally as possible.

4.) Avoid Overuse of the Affected Limb/Body Part

While it’s important to exercise the affected limb as we discussed, it’s crucial not to overdo it! Sometimes it takes pushing yourself too hard to learn what your limits are in terms of exercise/movement. When I finally got my RSD pain under control, I mistakenly thought I was completely rid of the disease. I went to a concert where I was on my feet for several hours, which ended up causing a severe flare and complete re-emergence of all my symptoms. After several nerve blocks, I’m back to minimal pain. But I definitely learned that standing for several hours is more than I can handle. Now I know my physical limits and to not overdo it with walking or standing. It can be difficult to pace yourself when your pain is low, but it’s important to be mindful of how far we are pushing our bodies.

5.) Wear Proper Clothing/Shoes for Maximum Comfort

If your feet are affected by RSD, finding the right shoes to minimize pain is critical. If RSD affects you somewhere else on your body, you might be sensitive to certain fabrics or can’t wear clothing that is too tight. Whatever is comfortable for you, wear it! After I was diagnosed with RSD, I had to get rid of 90% of my shoes. The only pair that felt comfortable and supportive enough to tolerate were my running sneakers, and they are still the main shoes I wear. Flats and heels are just not worth the pain it causes me! Do what you can to maximize your comfort by slowly accumulating a wardrobe of clothes and shoes that feel good on your body. Let go of your fashion ideals, and just let your body be comfortable.

The Impact of Mindfulness on RSD/CRPS

April 4, 2017

By Guest Blogger Emily Salser Nunez

How important is mindfulness and CRPS/RSD? According to Emily, it is crucial. Read Emily’s story and then see how being mindful helped her.

Eight months after fracturing my small toe in a simple misstep, I was diagnosed with Reflex Sympathetic Dystrophy (RSD). I had never heard of this disorder when my podiatrist concluded this was what was causing my excruciating pain and inability to walk. I knew something was seriously wrong, as over time my foot felt like it was burning and became bluish-black in color. So, at first, I was relieved that I finally had an explanation for what was happening to me. But then the podiatrist looked at me with deep concern and told me this condition can result in lasting, debilitating pain. “This is beyond my realm of expertise,” he told me. “You’ll need to find a specialist who can hopefully help you re-gain use of that foot.” Hopefully, I thought, was not a word I like to hear from a doctor. He wrote down the acronym RSD on a sheet a paper, and told me to go research the condition.

Following the doctor’s instructions, I went home and immediately Googled RSD. As I read about the horrors of this neuro-inflammatory disorder, I naturally became overcome with fear and anxiety. I wondered whether I’d ever be able to walk again, or whether this condition would spread through my body like so many others with this nightmare of a disorder. And as my fear and anxiety levels crept higher and higher, I noticed something—the swelling in my foot got more and more severe. This was a very important observation, as I noted a direct connection between my emotional state and my level of inflammation.

A couple months later, I saw a pain specialist who was able to successfully treat my RSD. She was the first person to confirm what I had observed on my own—that high emotions cause an increase in neuro-inflammation. Of course, the flip side of that is maintaining a calm emotional state can help lessen the severity of the inflammation and pain. She was quick to remind me that being fearful and anxious did not cause me to get this disorder in the first place. There is still a lot unknown about RSD, including why it occurs, but for me it is related to an autoimmune process already very present in my body. I also have lupus, and my pain doctor believes that RSD may be a manifestation of systemic lupus in my nervous system. So, while we can’t blame the disease entirely on emotions, we do need to acknowledge that emotions can have a profound impact on the disorder.

As I began a series of sympathetic nerve blocks to treat my RSD, I also began seeing a pain psychologist. He was able to explain to me the connection between stress, pain, and inflammation. When we are stressed, we tend to tense up our muscles, thus constricting blood flow and increasing pain. When we are calm, we let our muscles relax, and our pain is lessened by increased circulation. He taught me how the more I became anxious, stressed, and worried about my condition, the severity of the pain would increase. “Don’t worry about the pain,” he told me. But of course, this was much easier said than done. We all know that someone demanding us not to worry does not help mitigate our worries in the least bit. I needed more instruction on how not to worry.

To help decrease my stress and anxiety about living with RSD, the pain psychologist began a series of sessions with me on mindfulness training and biofeedback. The first exercise we did was a deep breathing technique. The breathing exercise is simple: inhale slowly through your nose, filling not only your lungs but also your stomach with air, and then exhale slowly through your mouth. Your exhale should ideally be much longer than your inhale. My pain psychologist had me to do 15 of these breaths at once, with my eyes closed. He instructed me to start doing these 15 breaths at set times during the day. So, I set an alarm on my phone at five times throughout the day as a reminder. Once I began incorporating these meditations into my daily life, I definitely noticed I was becoming more calm and centered. Even if I was in the middle of doing something, when that alarm went off on my phone, I stopped what I was doing to just focus on breathing.

Now, to be clear and honest, my RSD symptoms did not disappear when I started meditating consistently. But, I was able to cope with the symptoms better, and I was able to better control my emotional reactions to the pain I was experiencing. As my doctor noted, relaxation is incompatible with feelings of anxiety, frustration, tension, and pain. When I was having a particularly painful day, I would just breathe. The breathing exercises gave me a distraction from pain. After all, allowing yourself to focus only on the pain is a dangerous path to go down. By directing your attention to breathing, you’re directing your attention away from the pain.

My pain psychologist even showed me how meditation was having a physiological impact on my body. He connected my hands to thermometers, which were connected to a computer. As I breathed deeply and consciously relaxed my body, I could see on the computer that the temperature of my hands increased—a sign that my body was more relaxed with increased circulation. When the doctor asked me to speak about stressful topics or solve difficult math problems, I could see the temperature of my hands falling on the computer—a sign that my body was stressed and tense, with more constricted circulation. This technique is called biofeedback, and has helped me learn to control the blood flow to my hands and feet. As someone who also has Raynauds Phenomenon (a circulation disorder that causes blood vessels to narrow), this has been particularly useful!

Another important mindfulness tool that the pain psychologist taught me was about the impact of positive self-talk. Self-talk (or they way in which we speak to ourselves) can have a big impact on pain levels. For example, negative self-talk would include phrases such as:

“I can’t believe this is happening to me.”
“I’ll never be able to enjoy anything if I can’t walk.”
“I can’t take this anymore!”
“No one will ever understand the pain that I’m in.”

Negative self-talk results in a self-defeated mind, which translates into pain signals being interpreted as suffering and misery. Now, if we change some of that negative self-talk into positive self-talk, it might sound more like this:

“It’s unfortunate that I can’t walk today, but there are many other things I can still do and enjoy.”
“I’ve had days this painful, and I have always gotten through them. I can get through this one.”
“I can distract myself from the pain by meditating, watching a movie, or reading a book.”

Mindfulness training teaches us to be conscious of our own self-talk. By training yourself to be more understanding of your own illness, you can bring in more positive self-talk and decrease your level of overall discomfort.

There is certainly a lot about this disorder that is out of our control. But it’s comforting to know that we have the power to control how we respond and react to the pain of RSD. Pain doesn’t necessarily have to result in suffering. Learning mindfulness and meditation techniques was and continues to be a very important part of my RSD treatment plan. My RSD has improved a great deal, but it is still very much present in my life. When the next flare comes, I know that I have many mindfulness resources and tools to use to help me cope with pain and stress effectively.

How RSD Potentially Stole My Dreams – Cope With RSD/CRPS

February 21, 2017

Written by Tatiana for the RSDSA blog.

Being diagnosed with RSD/CRPS is challenging at any age. Being young and going through the challenges of school can make it hard to cope for children and teenagers. Tatiana writes about her experience being diagnosed with RSD/CRPS, her stolen dreams, and how she has ultimately learned how to cope.

When I was a young girl, only five years old, I had crazy dreams. Every single time someone asked me what I wanted to be when I grew up, I’d smile, and tell them that I was going to be a dancer. A ballet dancer, to be specific, though I often dreamed of ballroom dancing. Getting to wear a ballgown, heels, and having a handsome gentleman’s hands draped on my waist, as I twirled around to music over and over was beyond exciting to me. I yearned for it. I lusted for it. Something I didn’t know when I was five years old was that the daydream would have ended sooner, rather than later. I did not know that by the time I’d turn sixteen, I’d already be living with a chronic illness.

Something that almost everybody knows about growing up is that it’s hard. Sometimes, it may even seem impossible. You may even feel like you just can’t do it. Between juggling school, and just everyday life, it can be hectic and stressful. Just imagine what it’s like to go through your day with pain so horrible, you’d wish to saw off one of your limbs, in hopes of finding some sort of relief. Imagine what it must feel like to have various parts of you set on fire, but realize that this fire cannot burn out, no matter how much water thrown on it, no matter how much ice you throw into the mixture. So, you want to fight fire with fire, and throw in some heat? I’m sorry to tell you this, but that’s not necessarily going to help you either. Reflex Sympathetic Dystrophy, now known as Chronic [Complex] Regional Pain Syndrome, is an autoimmune disease that attacks the sympathetic nervous system. It causes the brain to constantly send pain signals to different parts of the body, but the pain that it causes is not as simple as a muscle ache or a simple sprain. Reflex Sympathetic Dystrophy causes a burning pain that can be brought to a point in which one cannot take it anymore. Many people with RSD/CRPS turn to suicide as their only option, leading RSD/CRPS to also have earned the nickname of “The Suicide Disease.” Unfortunately, although I am just a child, and I am trying to grow up, although I am trying to make something of my life and finish school to move onto college, and [find] my place in the real world, I also have the burden of RSD/CRPS to carry with me.
I started to experience my pain six years ago, when I slowly lost my ability to even just walk. I had previously sprained both of my ankles, and had finally recovered. Or at least I thought. At just ten years old, I was able to say that I could watch all of my friends running around in the school yard, but I couldn’t run after them. It hurt me to a point in which the pain resembled walking on shards of glass. As a clumsy child, I, unfortunately, had the joys of knowing what that felt like. And with that I spent an hour in the podiatrist’s office, being told that it was simply a case of plantar fascitis, and that I simply needed orthotics. And so, it was orthotics that I received. I didn’t know that these would not solve my problem, though. I was unaware that my pain would come and go as it pleased, and leave me practically crippled, from time to time.

On my fourteenth birthday, I had the joy of returning to the podiatrist, after being unable to walk again. This time, I was told that I had tendinitis, and a bruised bone. I was given a note that stated for no gym until further notice and an array of braces to wear on my ankles. At that point in time, friends of mine began to question me. They’d ask me questions that not even I could answer at that point. “Tatiana, what is wrong with you?” “Dude, you’ve been out of gym for eight months, when are you coming back?” etc. For a fourteen year old, being out of gym for more than eight weeks alone was a huge deal. And when teachers started to question me and my walking boot, that I was in to prevent pressure from being put on my foot, I had no clue what to say. But as before, my pain went away for a while.

September of 2015 came around, and I was in Florida with my family, trying to have fun, and enjoy myself in the various theme parks. I’ll never forget the night that we were simply walking through Epcot, and it was as if someone had literally torched my foot. I brushed it off, thinking it was just muscle soreness, from walking around way too much, without sitting. Everyone around me was having fun, and enjoying themselves. I didn’t want to ruin the trip. So, I kept my mouth shut until the end, when all of the walking, moving, and various rides jerking my body back and forth finally took a toll on me. Throughout our plane ride home, the turbulence brought me enough pain to make me want to crawl under a rock and never leave that sanctuary that that rock would’ve brought me. For days following our return, I stayed in bed and cried. I was in so much pain and discomfort- there was nothing that I did that would alleviate it. Another trip to the podiatrist, more false hope, and more joy stripped from my already stressful life. I was missing so much from my sophomore year of high school. I was missing out on everything my friends were doing, and the places they were going. I was at a point where I could barely even do the work I was given from my teachers. I was confined to my bed, living a painful life, full of depression and tears. Every single time that I attempted to leave my house to do something, the pain crept up on my shoulder, as if it were a ghost that was dying to tease me to no end, despite the fact that I could never catch it no matter how hard I tried. My pain to me was what a little black cloud was to a depressed person. It followed me around to no end. Toying with my emotions, making me hate myself more and more, with the less and less that I was able to do.
After missing twenty three days of school, and being out of gym for two and a half years, nobody believed me anymore. My friends began to doubt me, my family, even my own mother doubted me. Though my doctor always told me that she believed me, I started to doubt myself. I started to think that this pain was just a figment of my imagination. Something that my brain decided to make up because it had nothing better to do with itself. And that, that dragged me down into this depression that I was unsure I’d ever survive. I built up my walls and locked everyone out, including those closest to me. I no longer wanted to know anybody. I’d look in the mirror and see this broken, tattered body, looking back at me. And when I’d go to turn away, I’d whisper to the soul trapped behind the shards of glass, “You are such a liar.” I was breaking my own heart and I didn’t know if I could save myself.

In April of 2016, I could no longer move from the waist up. My ankles, believe me, they were just shot… I couldn’t bend down to grab a pen that fell from my bag, I couldn’t walk up two stairs, I couldn’t even sit up to do simple tasks such as drinking a tiny bit of water. I felt the weight of the world on my shoulders. I was falling behind in school and in life. Yes, I was surviving life, but was I really living it? Not at all! I’d drag myself from my bed every single morning, and force myself to get up, to go to school, where I’d suffer for 8 hours, only to come home and cry myself to sleep. Everywhere I went, I received pitiful glances and sad stares from people who knew me and the happy person that I once was. I begged the neurologist for answers. For a solution. For anything other than pity. And finally, after 11 MRIs, 8 X-Rays, and 3 C-T Scans, I was confronted with the fact that I have Complex Regional Pain Syndrome. By then, after much research, and suggestions from doctors, I had known what CRPS/RSD was. And I knew that it was one of the most painful conditions out there. At the end of the day though, the real question was, could I actually live with this?

I am almost seventeen now, and life is hard. Life is very hard. I have to work ten times harder to complete simple tasks than most people do. Getting myself dressed is an accomplishment alone. Occasionally, when I do have an endless amount of bad days, I do fall behind in school, and it is as if I am drowning in school work and the fact that I feel the need to impress my family. I think one of the most complicated things for me, though, is trying to keep up with my friends and people my age. Sometimes, I feel like an eighty year old woman, trapped in the body of a seventeen year old girl. Yes, I have friends. Yes, they have lives. They go out, they have fun. But I don’t always want to go out. I always want to have fun, but from time to time the pain becomes unbearable, to a point in which I cannot even go to school. Of course, people question me or accuse me of being lazy, but I know for a fact that I am not that at all.

Another huge problem about being seventeen and having CRPS/RSD is painkillers. I, like most patients with my illness, depend on painkillers to live a somewhat decent life. But, with the opioid epidemic, and me being just a teenager, people often accuse me of being a drug addict or a drug dealer. My question for the people who jump to conclusions would be, just who wants to take more than fifty pills per week? I take eight pills every single day, just to live a sufficient life. That’s fifty four pills per week. Do people actually find enjoyment from that? Because I don’t. I never could. Something that people don’t realize is that aside from naltrexone, I don’t take anything crazy. I take Lyrica, and if needed, gabapentin. It’s not like I’m popping oxy every hour on the hour. This is really a huge misconception, that I honestly hope is cleared up soon.

Despite all these struggles with people and their opinions, a topic that most teenage CRPS/RSD patients will not touch on is the struggle with themselves. Despite my hope, despite my dreams, my mind is a battlefield and I am constantly at war with myself. Being seventeen and struggling with such a chronic illness leads me to have such hateful thoughts towards myself. My mind is constantly pondering why I still have to be here, if I’m only going to suffer. The second I have a flare, I freak out, and wonder if I will ever find a lover who will care about me, despite my disease, despite the fact that it leaves me paralyzed with pain, and often, in tears. This is the part where my CRPS/RSD would want me to tell you that after this, I am giving up. That I refuse to go on. This is the part where it wants me to tell you that this is the end, that I cannot win this fight. However, I am not going to give that obnoxious ghost what it wants. I am the author of this story, and I refuse to lose this fight. I have been in therapy, working on my emotions affiliated with my illness for several months now. Finally, I have learned to love myself. I have learned to ignore what people have to say. I have learned to never give in, and to never give up. The second you allow it to win, is the second that you lose yourself. Although it might be hard, although this body may be cursed with such a painful disorder, I have decided to throw away that little dark cloud, and see the light again.

At the end of the day, no matter what happens, no matter how bad you feel, or how horrific your pain is, all that matters is you. All that matters is you and the fact that you can win this fight, no matter how hard it seems. Your pain tomorrow will not be as bad as the pain that you have felt today. Your life is not going to be horrible forever. Your initials are not RSD or CRPS. And all of us fighting this horrid disease, no matter how young or old, need to know that life does not end with RSD. This is only the start of my journey, and I am terrified for what is to come, but I am ready, and I am stronger than ever. Life starts now.

If you are feeling like harming yourself, feeling suicidal, or know someone that is feeling that way, please call the National Suicide Prevention Lifeline at 1-800-273-8255 or visit their website