CRPS Awareness Day 24: Sharing My Skills and Working

Kelly details how she shares her skills while working in pain. She has had to find ways to adapt with CRPS.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!

CRPS Awareness Day 23: Why We Are Thankful Despite CRPS

The RSDSA community came together to write about why they are thankful despite CRPS RSD this ThanksgivingCompiled by Samantha Anderson for the RSDSA blog.

Thanksgiving can be a particularly difficult time for people living with CRPS. The holidays in general are stressful. Whether you are hosting dinner at your house or have to travel to a relative’s house, it can be stressful. However, Thanksgiving is a wonderful part of the year, as we get to reflect on why we are thankful. Sometimes, it can be difficult to be thankful when you are living with the pain associated with CRPS. But, there is always at least one reason.

We asked members of our wonderful RSDSA community to let us know what they are thankful for this year. We received an overwhelming amount of responses. After reviewing everyone’s amazing submissions, we wanted to feature some of them in the blog. We hope that blogs like this one remind you to reflect back on the positive elements of your life. There is good in everything, sometimes you just have to search. I understand this first hand, as I am a member of the CRPS community. What am I thankful for this year? I am thankful for having such a strong, powerful community that supports one another and that is so determined to make a difference. I am thankful for the amazing support system I have, from my husband, to my mom, and the family I got to choose. I am thankful for the healing power of animals. I am thankful for each and every one of you! Here are some of the things your fellow community members are thankful for. Enjoy!

“I am thankful for the people who have adjusted to the CRPS with me” -Heather P.

“I’m thankful for my eternal salvation and for God who gives me just enough strength to face each day and for all who walk with me.” -Joy K.

“I am thankful for CRPS making me the strongest I have ever had to be and learning that I can still smile through all of this pain.” -Brenda B.

“[I am thankful for] a roof over my head, food in the cupboard, and my little dog who never leaves my side.” -Rochelle O.

“[I am thankful] for RSD friends that I would have never met but for this monster!!! So many Warrior [sic] and so much caring and love!!” -Earl D.

“I’m actually thankful for the pain. As weird as that sounds, it has changed my life. It has forced me to slow down and enjoy the smallest things that most people take for granted. It has allowed me to learn about self love and to actually live life rather than just existing.” -Kristin M.

“I’m thankful for my support system. My mom and my aunt are experts at waiting room etiquette. I’m thankful for my doctor and his nurses. I’d be lost without them!” -Maria T.

“[I am thankful for] My pain doctor, who first diagnosed me 29 years ago next month, and whose knowledge and tenacity allowed me to talk again. He has passed away and I never got to thank him enough but he was ma saviour [sic]. RIP, Dr. S.” -Sharon V.

“The lessons that come with CRPS: patience, perseverance, balance, and celebrating the small wins. It reshaped my world by now I value so much the time I have with family, friends, fur babies. I celebrate the days I work and the walks I take” -@moonglotexas

“I’m thankful for the very breath I breathe because I have had breathing problems before. I am thankful for my smile because I almost lost it when I was 10. I’m thankful for the pain I feel because it means that I am not paralyzed. I’m thankful for every single day that I can wake up because God has allowed me to stay on this Earth with my family for another day. I’m thankful for the life I have because I almost lost it when I was 10. I could have died from the cancer that I had at 10 so I’m thankful that I have CRPS because it’s not cancer. I’m thankful for everything I have because I’ve had less.” – Windy F.

“I am thankful for my son, I have been living with this for probably most of my entire life, I have been in very dark places, & just having him & loving him & knowing truly what unconditional love is fills my heart everyday [sic], without him I don’t know if I could fight this disease much longer, but he pushes me out of my safe places & into new adventures and levels of strength I didn’t know I had! His imagination & curiosity help me see the world in so many amazing ways, he has no clue but he has given me a piece of life I never thought I would have, 6yr old little hero, & I couldn’t be more proud of him every day! The empathy he shows others warms my soul.”- Ashley M.

“[I am thankful for] my family, Netflix, painting, and writing all help distract my pain. I am also thankful for my friends who have stuck by me and for my youth group and youth pastor and his wife.” -Makenna R.

“I am thankful for my family’s unconditional love and support everyday [sic] and in every aspect of this disease..[sic] I have six kids four grandkids and my husband..they help me in every way..even allow me to just have my meltdowns but there to pick me up after.. I truly believe that if not for them I’d be dead by now! They are my rock through this fight.”- Jeananne B.

“I’m thankful for the things that I can do instead of dwelling on what I cannot do! I’m thankful for God giving me the power to be tenacious and to not give up despite the pain nor give in to the pain. I’m also thankfuol [sic] for the power of positivity and for being able to make “Hope” a verb and to do something about it as much as possible. I’m also thankful for my soul mate, my husband Craig; who’s also my caregiver much of the time. Lastly, but definitely not least, I’m thankful for the few non profit org who have been with me and for me from the start.”-@raseforcrps

We had so many incredible responses. It was one of our most impressive comment threads. We want to know why you are thankful. We challenge you to make a video, a post, a tweet, anything to explain why you are thankful. Tag us so we can see. Happy Thanksgiving!

Please consider making a donation to RSDSA today!

CRPS Awareness Day 22: 5 Things I Do To Kick RSD’s Butt

How does Melissa kick RSD CRPS butt every day? Read this list to see how she does it, including how she rides her bike.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.

  1. 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.

  1. 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!

  1. 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!

  1. 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?

CRPS Awareness Day 21: Three Different Perspectives About CRPS

Bob and his wife Maria. Bob has been a caregiver, a suppport group facilitator, and a board member for RSDSA. Read his perspectives on CRPSBy 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.

CRPS Awareness Day 19: Hot Tub, Cold Turkey

Nancy writes about living in pain, but experiencing workouts, hot tubs, and wine.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.

CRPS Awareness Day 17: Attending Events In Pain

Samantha writes about attending events while mnaging the pain associated with CRPS. It is a learning curve, but it can be done
Samantha and her father at her rehearsal dinner.

By Samantha Anderson

When was the last time you went to an event? A wedding, a reunion, a birthday party, a holiday- they all count. It can be incredibly stressful to prepare for these events, especially when you cannot predict how your CRPS pain is going to be. But, every day, we continue to push to make it to the things that are important to us and those we love. I thought it was only appropriate to write this blog, as I am attending a wedding tonight after injuring an area of my body that is greatly affected by CRPS earlier this week. With that being said, congratulations to my cousin Andrea. This is inspired by your wedding!

Preparation. It can be the most important part of everyday life. If we go to the grocery store, we prepare by having lists and coupons ready. If we go to the doctor, we have records and logs of issues to report to them. How can we prepare for a major event? This starts off within the month of event. While we must continue to live our day to day life, it is important to try to conserve energy and stamina for the big event. This does not mean everything has to stop, but try to make life easier on yourself. Rest up as much as possible, prepare meals in advance so you do not have to do as much every day, ask for help from family and friends. This is something I would recommend anyway, but especially during times of special events. If you are experiencing pain, continue about with the plan put in place that helps you manage your CRPS. Whether that includes physical therapy, acupuncture, meditation, medication, or anything else, you will want to keep doing that. (PS. If it is an event you need to bring a gift for, remember that registries are now online and you can get items shipped right to your door OR to the door of the person/people receiving the gift). This prevents the last-minute rush that so many of us resort too.

Dress to impress (no one). Okay, to some degree, dress codes need to be followed. Weddings are a bit more formal than a birthday party. However, there are ways to dress comfortably and appropriately all in one. With the wedding I am going to tonight, I will be wearing a long sleeve shirt and a tea length skirt. The skirt has a silky layer by the skin, so it will cause minimal irritation to my legs. This skirt also covers the swelling in my knee and discoloration of my legs, especially after getting injured early in the week. The elastic on this skirt (and the flowy bottom) help hide the swelling I currently have in my abdominal region as a result of cysts. But that’s another health story. The arms of my shirt are soft and work in case there is an air conditioner that is cranked too high, minimizing my pain. I also tend to bring multiple pairs of shoes with me, as things can change from moment to moment. I may wear my Toms, or I may wear a pair of flats that work with my foot. It depends on the swelling. Generally, I wear LuLaRoe items to events. I have found soft shirts, dresses, skirts, and leggings that work with my CRPS. Some days, I need tight garments around my CRPS affected limbs, making leggings a perfect fit. Other days, I need loose fitting clothing. It’s day to day. I always try to have a few ideas of what to wear in case my body is not cooperating. This can go under being prepared, as you will not have to experience last minute panic trying to find something to wear. Men, I’m sorry. I’m not nearly as in tune with men’s fashion as I should be. But Target seems to have some soft men’s clothing, based on what I’ve experience while switching my husband’s laundry over.

Be strategic. You know your CRPS and overall pain triggers (loud noise, a lot of vibration, sunlight, etc.). You should tell whoever is planning the event about your needs. For a wedding, you may want to be away from the speakers of the DJ, but also not under a vent. Tell the bride/groom/mother of one of them and see if they can talk to the venue to discuss the best place for you to sit. Do this for other events, too. If you do not say anything, no one will know how to make you more comfortable. If you do say something and they cannot accommodate all of your requests, at least you mentioned it and gave it a shot. You have to do what is the best for your health. Also, brings things that will help make you comfortable. If you need a pillow or blanket to protect yourself or to minimize your pain, bring them with you! We tell all of our conference attendees to make sure that they bring anything that could help their comfort levels, especially staying in one crowded room for a long period of time. I have seen some fantastic ideas. You have to take care of you.

Have a good time. This sounds like a silly instruction. However, after talking to so many of you (and living with this myself), I know that we can often feel guilty for going out and having a good time. We get anxious, thinking people will think we are magically cured just because we are smiling and laughing. We worry that our employers or people from social security will find out and will then take everything away, even though we have worked so hard. However, by having a good time, I am not saying to go run and jump on a trampoline and make sure to hit all of your affected limbs. I am merely suggesting that you enjoy the moments. Occasions of celebration are meant to be fun. We are allowed to enjoy life, even though we are in pain. As a matter of fact, that’s more of a reason to enjoy life. Say this to yourself (or out loud): “I am a CRPS warrior. I live in pain, but that does not define me. I define me. Today, I am going to embrace fun and not feel guilty.” That felt good, didn’t it?

CRPS Awareness Day 16: What We Lose When We Undertreat Pain

Kate was a civil rights attorney for the Justice Department when pain consumed her life. Using opioids to function, she moved on to become a federal prosecutor. Based on her experience, she recorded this TED Talk to show how the opioid “crisis” is harming the people in pain that need it and how it harms so many when we undertreat pain.

Thank you to Kate for sharing her story and her opinion on such a large platform. We are honored to share it through our blog.

The full description of this YouTube video states: “Kate Nicholson was working as a civil rights attorney for the Justice Department when a surgical error left her unable to sit or stand, largely bedridden, and in severe pain for almost 20 years. Using opioids as an appropriate pain management tool, she continued to function as a high-level federal prosecutor. In this talk, Kate pivots from her inspiring and excruciating story to examine the under-treatment of pain, showing how our approach to opioid abuse by 2.5 million Americans is hurting 50 million people in severe or persistent pain.

Kate Nicholson served in the Civil Rights Division of the U.S. Department of Justice for more than 20 years, practicing health-related civil rights law and securing powerful victories including in the U.S. Supreme Court. She is currently writing a book about her personal experiences with severe chronic pain. Kate is also an arts writer and enthusiast who helped found the new non-profit, Tilt West, recently named by Westword as the “best think tank for arts and culture” in the area. Kate was a Senior Fellow at Dartmouth College and is a graduate of Harvard Law School.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx.

This video is shared with Kate Nicholson’s permission.

CRPS Awareness Day 15: Young Chronicle Featuring Courtney

Courtney lives with CRPS but is going to medical school to become a doctor. See what she says in the young chronicleWritten by Ashley Epping

Courtney developed CRPS when she was 14 years old in her right foot; seven years later at age 21, she is now a pre-med student at Gordon College studying biology. Unusual circumstances happened between Courtney’s story and my own.

Courtney and I went to elementary school together in 2006; I then changed school districts as we moved into middle school. Three years later, Courtney was diagnosed and informed that there was another young girl with CRPS in our city. Courtney and I were then reunited by CRPS and went on to connect our families, treatments and therapists. She was the first to enter the Chronic Pain Rehabilitation Program at Cleveland Clinic. My family and I traveled to visit the clinic where Courtney gave me tips and advice for a few weeks later when I would enter the same program. When starting this blog series on young adults, I was incredibly excited to interview Courtney and learn about her current life at college with CRPS.

When you were applying to college, did you have hesitancies because of your pain?

“Not really because since I was little I knew I wanted to go into medicine. Once I was diagnosed, I always said that I will still be a doctor, and this is not going to stop me.”

Has having CRPS influenced your medical career path?

“I knew that somehow my perspective from what I have gone through with all of this, would help me in whatever field I go into. It helps me relate to people better as I work in hospitals.”

Do you have a disabilities plan in college?

“No, my school does not know that I have CRPS but a few of my professors do. I have always had the mindset that I don’t want to be treated differently.”

In your four years at college, have you had any new pain struggles?

 “The first year was hard because my mom wasn’t there if anything happened. The main struggle was this past year when my migraines became really bad. Last spring when the migraines became debilitating, it became hard because I started to question if I was way in over my head.”

“I always said that I will still be a doctor, and this is not going to stop me.”

Currently, Courtney is interning at Harvard’s teaching hospital within allergy and inflammation research. She wants to go on to a type of pediatric specialty after graduating with her bachelor’s degree. Courtney’s pain is still prevalent and a daily struggle, but she is able to function just like anyone else. She discussed with me that, “You become accustomed to whatever you’re dealing with. When you have this pain for a long amount of time, yes it still hurts, but it would be kind of weird if it didn’t hurt. You have to become used to it.” This is almost an anthem for young adults with chronic pain because we have so much life to live and many paths to discover. We can accomplish anything we set our minds to, it just may get done a little differently.

“I recognize it may be harder with CRPS, but I am still going to do it.”

Courtney gives the advice that you have to find what motivates you to get up everyday and do it. She says, “It is why I went to college for pre-med, and why I am going go to the medical program I wanted to. I recognize it may be harder with CRPS, but I am still going to do it.” Courtney and I have stayed close friends, and we continue to support each other in our ongoing adventures.

CRPS Awareness Day 14: The Anatomy of Hope

Chiropractor Dr. Katinka van der Merwe writes about the antomy of hope and how she helps CRPS RSD and the nervous systemWritten by Katinka van der Merwe

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

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

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

 

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

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

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

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

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

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

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

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

 

OUR “SEVEN PUNCH” SYSTEM

WAKING UP THE VAGUS NERVE

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

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

 

NEUROMUSCULAR REEDUCATION

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

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

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

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

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

This system has been FDA approved specifically for:

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

 

FREQUENCY SPECIFIC MICROCURRENT

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

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

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

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

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

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

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

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

NERVOUS SYSTEM REHABILITATION

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

 

DETOXIFICATION

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

 

FUNCTIONAL BLOOD PANEL ANALYSIS

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

 

SUPPLEMENTATION BASED ON YOUR UNIQUE DNA

 

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

 

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

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