Category: RSDS General Info

Written by Shannon Leidig for the RSDSA blog.

Everyone who knows me knows how much I love music (classical as well as Broadway show tunes). Music has always been a huge lifeline for me, even more so the past four years as it rescued me from the pits of hell battling the beast known as RSD/CRPS. Being diagnosed with this during my freshman year of college detoured what I started out majoring in; however, it has been my one steady constant. Today as I was playing with my eight-year-old Bichon, Finian Blue, I was listening to my tunes and this song from Dear Evan Hansen “You will be Found” hit me like a ton of bricks. I have heard this song before; however, today it literally sucker punched me and made me really stop and think that ‘I am not Alone during this battle with RSD/CRPS.

Have you ever felt like nobody was there?
Have you ever felt forgotten in the middle of nowhere?
Have you ever felt like you could disappear?
Like you could fall, and no one would hear?

RSD/CRPS does not care if you are young or old or what stage of life you are in as it will strike you when you least expect it putting you on a slippery sliding slope with what is more downhill than uphill. You feel as though nobody gets it and nobody understands as they all look at you as though you have a bazillion heads. So, you put on a brave face for everyone else and when alone you cry buckets of tears as the pain is so intense even shower water hurts! Family and friends say “I got you” or “I am here all you have to do is ask and I got your back,” yet when push comes to shove you are all alone because nobody GETS IT! Have you ever felt like nobody was there? That no one gave a dang, nobody cared and that you were the only one who felt the way you do?  YOU ARE NOT ALONE!

I started thinking, what can I do so other RSD/CRPS Warriors do not have to feel like they are on their own battling yet feeling like you are so beaten down? There are people who care and want to help. All you have to do is reach out and grab hold of their hand, and they will help carry you through!

Then it hit me: I know what I can do to raise awareness so others are not alone. The last four years have shown me how much this is needed. There is much more awareness now than when I was diagnosed 31 years ago, but there is a heck of a long way to go. During one of the darkest times a friend reached out and asked what can we do, and before we knew it, the Orange Train began to board to leave the station. I reached out to a few of my friends who have been there through the good and more so the bad – Allison, Amy and Roz were asked if they would help with awareness – and they said sure thing.  

We started meeting by Zoom thanks to COVID. We really wanted to get on the awareness train in 2020 but COVID gave us a whopper of a detour. However, Allison, Amy and Roz never faltered in their steps of support. We started meeting at least once a month (and sometimes two!) to discuss our ideas for what we call Operation Orange. Thanks to RSD/CRPS, there were many times meetings had to be rescheduled and I hated to do that as the three of them work and have families. Were they upset? NOPE as THEY GOT IT! They said, “We are your arms and legs when you feel like you cannot go any longer. We will be your voice when you cannot speak as the pain just grips you.”

Finally, “I have been Found.”

Well, Let that lonely feeling wash away
Maybe there’s a reason to believe you’ll be okay
‘Cause when you don’t feel strong enough to stand
You can reach, reach out your hand

I recall quite vividly the dark and lonely nights sobbing in bed feeling as though I let them and everyone down as my head says go yet my body betrays me yet again as it fights this terrible Painful Beast that just does not stop! However, Allison, Amy and Roz GOT IT. They are here for me no matter what through the good and bad, the pretty and the ugly, the light and the dang dark and dangerous days when thoughts start to drift. It just warms my heart as here is a small group of people who want to do something.

And oh, someone will come running
And I know, they’ll take you home
Even when the dark comes crashing through
When you need a friend to carry you
And when you’re broken on the ground
You will be found

RSD/CRPS impacts every area of your life no matter how fast you try to outrun it. It will grab your mind, your body, your life, the lives of those who matter and mean the world to you. You feel alone, crying alone in the night, wondering WHY. WHY now, WHY this, WHY me? The tears start to flow, and they cannot be stopped. Why can’t someone help me? I need you and where is my Orange Train of people who want to be my arms and legs? Are they genuinely saying this or is it just more BS that I am tired of? I need help! Please are you there to help me?

They were reaching out their hands for me. They were NOT going to let me fall. They were going to carry me through the good and bad, no matter how ugly it got. They were there. . . and I wanted others who battle this beast to know that they are NOT alone. And here comes the Train. I have been found. Reach out your hand we will grab hold and hang tight NOT letting you go!

Out of the shadows
Morning is breaking
And all is new, all is new
It’s filling up the empty
And suddenly I see that
All is new, all is new

You are not alone
You are not alone

We finally planned and had our first Operation Orange Paint Day on July 18, 2021 and almost twenty folks were there. WOW. People were there to support me and those of us who deal with this beast – not only the RSD Warriors but those in our families – who sit by and want to help but do not know how and friends who mean it when they say, “We have found you and we will help you.” We raised almost $700 for RSDSA. We want others to be found and not battle this alone.  RSDSA posted our pictures on their Facebook page, and we have found others who want to be a part of our event. Our Orange Train started planning more events and I just want to cry. Finally, we are making a difference. We are finding others who are not alone. We can battle together. 

We scheduled another paint day for Sunday, October 24, 2021 and we had generated a lot of interest. It was looking like we were going to have a great turnout for our October event and then people on the RSDSA page started asking where we were located and why they can’t have their own local paint day? The idea started to percolate on doing a virtual event! I talked with Jeri at RSDSA, my Train as well, as our instructor Kathy and we then had a virtual event that brought people from all over the United States together to make a difference by FINDING others, so we are NOT alone as we battle this catastrophic illness!

I am left speechless (which is a rarity for me), but for the first time in a very long time we have people who care. The days are not as dark though there are still a lot of storms and tornados, but for the first time in months I feel the support from so many. 31 years ago when I was diagnosed with RSD/CRPS, there was not much known. We had nowhere to turn and we honestly felt that nobody gave a dang and nobody cared. We have a long LONG way to go, but we are being FOUND!

I want to thank my parents, John and Mary Ann Schildt, as well as Susan, the most amazing sister anyone could ever ask for, my precious fur babies, Finian Blue and Luna, as well as those on the Orange Train, Allison, Amy and Roz, as well as those who are not named but who are part of the Ripple Effect. You all are my heart and I am truly blessed knowing I have been found!

Even when the dark comes crashing through
And you need someone to carry you
When you’re broken on the ground
You will be found

When the sun comes streaming in
Cause you’ll reach up and you’ll rise again
If you only look around
You will be found

Words and Music from “You Will Be Found” from the Broadway Musical ‘Dear Evan Hansen’

Please consider making a donation to RSDSA today!

Written by Sonny Grosso for the RSDSA blog.

In November 2015, “Security to FP2 STAT” came over the radio. As I reached the room, a patient who had just come down from surgery was violently coming out of anesthesia. He was 6’3” and I am 5’9”. After several attempts to calm and subdue him, I held him down tightly as they administered Adavan through his IV. Mission accomplished!

Within 20 minutes, my left hand swelled grossly and began turning purple. The pain was almost unbearable. I went to the ER and they x-rayed my hand and wrist. It showed no breaks or tears. Since it was a work related injury I was forced to stay home and not return until cleared.

After visiting three surgeons, undergoing CAT Scans and MRI’s, I was sent to physical therapy. The ice and heat stimulation made the plane flare up my arm into my shoulder. Big boy tears streamed down my face every time.

After numerous nerve tests and ROM tests, I was referred to a neurologist. After more nerve tests and ROM testing, he whispered, “I hope I am very wrong, but I believe you have CRPS, Complex Regional Pain Syndrome. Formerly known as RSD Reflex Sympathetic Dystrophy.”

“What the hell is that?,” I asked and he explained as neat he could to this layman’s brain. He instructed me to research it online and ordered a complete body scan. The scan showed no evidence of RSD/CRPS.

My next and final stop was to a pain management doctor who immediately confirmed RSD/CRPS after several tests and examinations. After trial and error on medications and my desire NOT take opioids, Gabapentin and Cymbalta were prescribed. It helped with the pain, but not the swelling.

I underwent ganglion nerve blocks, ketamine infusions, and more ice and heat stimulations. Nothing worked which depressed me greatly because I knew other patients who had almost immediately success with both. We raised and lowered the dosages until we found a level field of existence. Over the next four years, it spread from my left hand/wrist up the arm to my shoulder and then down the right shoulder, arm and wrist/hand. Often times it looks like I have cartoon hands.

By 2019, it was also in both feet with similar swelling. Workman’s Comp doctors were more than reluctant to concur with the diagnosis and treatments. Obviously the cost factor was their main ally in these decisions. But over time and much traveling around New York State, they slowly began to concur.

In 2019/2020 I was diagnosed with prostate cancer and underwent CyberKnife radiation. The radiation caused necrotic tissue damage to the prostate and bladder. Many rounds of antibiotics did not solve the burning urination that comes with the tissue damage. I was ordered to undergo 40 rounds in the Hyperbaric Oxygen Therapy (The Michael Jackson Tube).

After 15 rounds I began to notice the swelling disappearing. The pain increased slightly, but it was bearable. After 25 rounds, my hands and feet looked almost normal again. So while the HBOT didn’t help my prostate problems, it visibly had a positive effect on the abnormal swelling and discoloration. I’ll take it!

With all of the theories and practices out there, it was this fluke that helped me. But the key is to keep pushing. Keep asking the questions. Many people still look to us as fakes, hypochondriacs and scammers. Even though the disease, syndrome, disorder (whatever they want to call it) has been around.

The only mental thing about RSD/CRPS is what we allow it to do to us. Once we can understand that not everyone will grasp what we go though, unless there is grossly visible swelling, we can explain, advocate, and even teach/preach about this physically and mentally debilitating medical condition. If they get it, fine. If they don’t get it, fine. It’s our battle, our pain, our lifestyle change.

Surrounding ourselves with a great support group (regardless if they are family are not) , is just as important as any medication, physical therapy or counseling out there. Do what you love. Do not shut people out. Sing, dance, swim, visit, whatever brings a smile to your heart and gives you a mental break from the pain. We must also remember to sometimes put our superhero capes in the closet, swallow our pride and ask for the help we need to live each day.

I pray every day for all people, of all nations suffering from all diseases and disorders. As a cancer survivor now for the third time in my life, this is clearly the hardest fight I ever fought. So my fellow Warriors, I stand with you, fists up, ready to kick the medical alphabet around the world. I love you all and pray for your healing.

God Bless!

Connect with Sonny on Instagram via @sonnygrosso_songfthr.

Please consider making a donation to RSDSA today!

The RSDSA team is excited to have you join our second virtual conference from October 25th through October 28th. Below are a few FAQs to ensure you have an amazing experience!

Q. Is the conference free?

The conference is 100% free to join!

Q. When does registration close?

Registration does not close! You can register at anytime, even once the sessions have started!

Q. What time does the conference begin?

The conference officially begins with networking and our expo hall at 6:30p Eastern / 3:30p Pacific each night. Sessions begin at 7p Eastern / 4p Pacific each night.

Q. Which browser should I watch the conference on if I’m on a desktop or laptop?

Hopin recommends using Google Chrome or Mozilla Firefox when watching from your desktop or laptop. Safari is not fully compatible for video on desktops. Explorer/Edge is not compatible on desktops so we do not recommend using Explorer. View troubleshooting tips here.

Q. Can I watch the conference from a mobile device?

Yes! Please visit for days three and four on your mobile device.

If you are watching on your phone, once you login you will see the chat. You can minimize the chat by clicking the arrow on the right. From there, you’ll be able to see the buttons that says Reception, Session, Networking, and Expo. You can also download the app for iPhone or Android.

While the conference is available on your phone or tablet, watching on your computer will give you the best experience. View troubleshooting tips here.

Q. Where can I find the event schedule?

The event schedule for days one and two can be found here. The schedule for days three and four can be found here.

Q. How do I join a session?

At 7p Eastern each night, click on the “Sessions” button to see which sessions are available to join. Click into the one you are interested in. There will also be a chat inside of each session that will allow you to speak with other Warriors and ask the speaker(s) questions.

Q. Can I view more than one session at a time?

If there are two sessions running at the same time that you want to participate in, you can always “hop” between the two of them.

Q. How does the networking feature work?

Hopin’s networking feature allows you to have a one on one conversation with another CRPS Warrior for up to 10 minutes. Once you click on the networking tab, you’ll see a sentence that says “Are you ready? Click the button below to meet someone.” After you click the blue “Ready” button and confirm your audio/video settings (like the screen shown below), you’ll be in the queue to meet face to face with another Warrior.

If no one is available to chat at the moment, you’ll see a sentence that says “You’ll meet the next person available.”

Once you match with another Warrior, if you find yourself enjoying the conversation and want to connect with them, you can click the blue “Connect” button in order to share your information with them. It will only be shared with them if they click Connect as well. Their information will show on the Home screen when you log in to Hopin at hopin.to/account.

If you are not enjoying the conversation with that Warrior, or if the conversation is done, you can click the “Leave” button and you will not be matched with that Warrior again.

The timer at the top will show you how many minutes and seconds you have left with that Warrior.

The networking sessions will be available 30 minutes before and 30 minutes after our sessions each night.

View troubleshooting tips here.

Q. Can I watch the sessions later? Are they being recorded?

Each session will be recorded and you’ll be able to watch the presentations once we upload them to the RSDSA YouTube Channel here.

Q. What should I do if I have a question that is not listed here?

Comment below or send us an email at [email protected]!

Written by Belinda Conarty for the RSDSA blog.

How and when did you develop CRPS/RSD?

I had surgery on my ankle in July 2000 and the doctor nicked a nerve during surgery while repairing a torn ligament. When I did not heal after surgery, I was bounced from doctor to doctor. In October 2000 I got the proper treatment and diagnosis that changed my life forever. I was diagnosed with CRPS stage II and a week later I was told I had Fibromyalgia and Lupus. My world as I knew it was shattered. It started in my left leg and almost 21 years later I have full body CRPS.

What has daily life been like since your diagnosis?

Living with one illness is hard but facing three different ones every day is a challenge. My life has definitely changed. As strange as it might sound, being sick has actually made me better in some ways as I found an inner strength that I never knew was there. It is funny how you do not know how strong you can be until being strong is the only option you have. I take one day at a time because that is all I can do as I do not know what each day will be like. My good days are few and far between (more bad than good!), but I always try to find the good in the day ahead no matter how much pain I am in.

What is one thing you wish those without CRPS/RSD would understand?

That this monster is real and that I do not share my life, my issues, my chronic pain for pity, sympathy or attention. I talk about it, educate, and advocate because I do not want others to go through what I have. If one person is touched, just one, then something good has come out of all the hell I go through on a daily basis. In the end, it was worth it because I helped someone in one form or another. I will continue to fight and spread awareness until I have nothing left.

But, most importantly don’t pity me, don’t pacify me, don’t baby me and DON’T STAND in my WAY! FIGHT WITH ME, NOT AGAINST ME!

What advice would you give to newly diagnosed Warriors?

The best advice I can give to someone newly diagnosed with CRPS is give yourself TIME. You are going to get angry, you are going to cry, be scared, and mourn. You are going to be uncertain of your future and all of these things are okay and are expected to happen. But as you find your path and you learn how to navigate through this illness, some will be like me and be dually diagnosed or have multiple illnesses thanks to CRPS. But the one thing you cannot ever do is quit.

Believe me when I say you are stronger than you know. You will find an inner strength you never knew was there. You might not see it now, but with time you will become a better person and a stronger person because of your fight.

Most important, please know that you are NEVER alone in this fight as there are countless CRPS Warriors who have been where you are right now. You will learn how to cope with being sick and know we are in this fight with you. WE SEE YOU! We understand and we get it as we have been there. Just remember you can always reach out to a fellow Warrior day or night. We are in this fight together.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

It took me a long time not to judge myself through someone else’s eyes. Living with CRPS and its limitations makes it hard not to, but it is important that we do not let other people’s ignorance define what and how we feel about ourselves. Our illness is not what defines us, strength and courage are. We have to be proud of the things we are able to do even if it is just one thing that we accomplish in a day because only we truly understand the strength it took. 

What activities or treatments have helped you find temporary or long term relief?

I love the water and swimming is about the only exercise I can tolerate. I had nerve blocks in the past that provided temporary relief, but it did not last long. 

Anything else you would like to add?

In closing, I want seasoned and newly diagnosed Warriors to always know that you got this and that you are stronger than you know. You are never alone.

Connect with Belinda via Instagram at @chronic_pain_warrior_2020.

Please consider making a donation to RSDSA today!

Written by Shannon McMullen for the RSDSA blog.

How and when did you develop CRPS/RSD?

I developed CRPS about three and a half years ago after two left ankle sprains led to a bad case of peroneal tendonitis. We now know that EDS also contributed to those sprains not healing. I went through physical therapy, aqua therapy, MRI’s, X-ray’s and eventually was immobilized, which really led to the CRPS symptoms coming to light. Within a short time, it spread throughout my body and I began to experience some other symptoms, like nausea and dizziness. I also have Median Arcuate Ligament Syndrome, which caused a compression of my celiac artery and damaged the surrounding nerves, causing severe GI pain and symptoms.

What has daily life been like since your diagnosis?

Daily life has certainly changed; I have had to adjust to life at a different pace. I have had to change toxic practices I had before getting sick, like not resting at all, not taking in every moment, and going at a pace faster than lightning. I also had to learn to advocate for myself and accept that things are not always in my control. CRPS has caused my college journey to look different, but I believe that I learned things on the journey that a classroom or professor could never teach. Things change over time, for better or for worse, but I am constantly learning and trying to navigate life with daily symptoms. I struggle with feeling like it is one thing after the other, but truly taking it one day at a time has helped me a lot. 

As a Christian, I feel I am able to connect to Jesus and His suffering in deeper ways. I have developed a strong stance on the way communities of faith can be more inclusive and aware of disabled and chronically ill people, and I enjoy conversing with others and bringing awareness to this issue.

What is one thing you wish those without CRPS/RSD would understand?

I absolutely love this question. One of the biggest things I would say is that if you have questions or want to know how we are doing, just respectfully ask. It absolutely makes me so frustrated when people make assumptions or go around the subject. However, note that “how are you doing?” is a gateway to us lying about how we are actually doing. Consider asking other things, like some recent highs and lows or how has our emotional health been holding up. 

On that note, I want to add that we want to be able function and be like an able bodied person. This means that we will try to do things that our bodies will not approve of. Please be kind and let us know that our capabilities are enough, however it may look like for us, even if they change daily. 

What advice would you give to newly diagnosed Warriors?

You are probably feeling like you have been thrown into a new reality where little makes sense and everything that was familiar feels anything but that. My best advice is to connect with others who have CRPS. Search the hashtag on Instagram, reach out to organizations like RSDSA, whatever you have to do. Know that there is hope and what you are feeling is valid; there are people who understand it and are living it too. 

Reach out- you might meet some of the greatest friends you will ever have.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

I know you are exhausted. In fact, I do not think exhaustion is a strong enough word for the burn out, fatigue, and emotional effects this disease has on your life. The way you continue to take it one breath at a time makes me so proud of this community and our determined spirits. It is not easy to deal with this invisible flame and all of the things that come with it, but do not neglect your mental health. Over time, symptoms and situations change and in the moments when reality just hits hard, remember to be kind to yourself.

What activities or treatments have helped you find temporary or long term relief?

I found some relief by taking turmeric, using a compounded pain cream from a special pharmacy with gabapentin, clonipin, etc, in it. I also got a lot of relief from the Spero Clinic in Arkansas and vagus nerve work. I think it is really important to find a physical therapist who is experienced. I have done some work with helping a tight peroneal tendon that was exacerbating my CRPS pain and reducing my range of motion. 

I think it is important to have an activity to put your energy and feelings into – craft, instrument, writing, blogging/vlogging, or exercise. 

Anything else you would like to add?

Find your people. As cliche as it sounds, make friends with people who get it and talk about other things. I truly believe that CRPS gives you a unique perspective on life and being able to connect with others. 

Rest is important, and others do not have the power to tell you that you are lazy or rest too much. You are managing a challenging disease that has many invisible and visible effects, and your body is working very hard. Give yourself to rest physically, emotionally, and spiritually. They are all connected and you deserve it. Rest is not wasted time.

The pandemic has given everyone some small insight into the lives of chronically ill people with health affecting daily activities, not able to see friends, and the isolation it causes. I believe we can use this experience to show people how CRPS affects our mental health and seeps into just about all aspects of our lives. Though it is only a small bit of the experience, it can be used to show others that some people won’t have a “return to normal” with never having to think about health again. For some, it is a daily reality in many different forms. 

You have to be an advocate for your health. In all honesty, being rare can be exhausting. Sadly, you probably already know that some doctors will not know CRPS, and I highly recommend developing your own brief description of the disease that will allow others to have a basic understanding. You will learn when to walk away from a doctor that is gaslighting you and how to share symptoms effectively, although it is a constant journey of growth. Being rare is exhausting, but know that you are doing great and have some incredible critical thinking skills that only chronic illness can teach you.

Connect with Shannon via Instagram at @Shannon_735. and @crps.fighter.shannon.

Please consider making a donation to RSDSA today!

Shared with permission from Alexis Byers for the RSDSA blog.

CRPS Warrior Alexis Byers posted the below video message on her YouTube Channel focused on her journey with CRPS.

When we connected with Alexis, she said, “this is a message I needed when I was 17, scared, and just diagnosed. 🧡” We are so happy that she is using her voice to help others who are newly diagnosed.

Connect with Alexis on Instagram at @lexiii_beee.

Please consider making a donation to RSDSA today!

—

Full video transcript:

When I was just 17, I was diagnosed with Complex Regional Pain Syndrome, the worst pain known to man. Prior to having chronic pain, I was incredibly happy, relaxed, and an overall social girl. I got to live out my dream of becoming an actress, and I found friends that would later become my second family. Basically, I was at the height of my life.

Immediately prior to the diagnosis, I had made so many plans for what I want out of my future. It’s almost like you could tell that this would be the last picture of me truly happy. But you are no stranger to this feeling.

When you’re first diagnosed, it’s the scariest thing. You’re told that you have this pain deep within that feels like a fire burning from inside. And yet, there’s not much they could do to help you. That alone in itself is just as scary as the pain.

So I want to start off by saying, I hear you. I see you. I feel what you feel.

Just like you, every night I would stay up late with pain in fear of it only getting worse. Fear. That is what will stop us in our tracks faster than the pain. I understand where that fear comes from. You always think you’ve seen the worst of it. And then it surprises you. You’re checking off symptoms like it’s a shopping list. I get it.

I’ve spent a year thinking about this letter. I have so many things I want to tell you things I know you need to hear. You need validation. You need someone to tell you that it will be all uphill from here.

It breaks my heart to say that I don’t think I will be able to tell you that. I don’t want to lie to you. I can’t.

The road to recovery will be the hardest thing you ever experience. You will have to do things that shut your mind and body down. Take it from me. You will feel exposed. No one wants to talk about the hard stuff.

But when you find the right people, it won’t be so hard. That’s pretty good. Yeah, better, right? Yeah. All right. Yeah, good.

The moment it clicks, it just clicks. You’ll finally be able to breathe again.

You’ll start to live for yourself and you won’t live for the pain. The pain will take a permanent backseat.

Will it be no longer hard? No who said that life will be easy. But that’s the beauty of it. You will be the most incredible person because you fought something that was unbeatable.

So there you have it. CRPS is hard. It’s painful. And it can destroy your life. But there’s so much beauty that can come out of it. Once you take some control back and you can do it. My road isn’t easy and it still isn’t.

But I know that I’m capable. And I know that there’s so much more out there for me to live for. And that goes the same for you.

I will always be here but you need to show up for yourself. Pick today to start fighting pick today to take control.

Written by the Emily C. for the RSDSA blog.

How and when did you develop CRPS/RSD?

It was winter break and my best friend and I were so excited to be off from school, so we had a dance party. As a 10 year old diva, I thought it would be a great idea to stand on a dresser and perform like a little celebrity. As the closing act, I jumped off and hurt my left foot. I remember immediately crying. My parents iced it and we went on assuming it was just a sprain, which is what the doctor diagnosed the following day. I was prescribed a boot to help it heal. I remember crying and refusing to wear it, as there was a burning sensation when I touched my foot. We went back to the doctor a few days later. Luckily he was able to immediately diagnose me with RSD. Long story short, I was just a 10 year old girl having fun and just decided to jump off a dresser.

What has daily life been like since your diagnosis?

I am currently 17 years old, and life right now is “normal.” However, I will bring it back to the beginning. Immediately after my diagnosis, my mom spent her days contacting Children’s Hospital of Philadelphia (CHOP) and Children’s Specialized Hospital (CSH) to try and get me into their pain program. While waiting, I spent my days on crutches and in immense pain. I was only in 4th grade, so, I would get dropped off earlier than the other kids and have someone help me carry my backpack.

In school, no one understood my situation. Some kids said I was faking it, being dramatic, or that it was just a sprain and that they have had them too. I knew it was much more than that but as a kid, that was hard to understand. It was also really hard watching kids play, for months, while I sat back and watched. Besides the mental impact, my foot was constantly hurting. It was super sensitive to touch or movement. My parents had to find new roads to drive on because driving over the smallest bump and having my foot jolt really hurt. My foot was always in a sock, which took me 15 minutes to get on each day, and a lot of tears.

My foot started to get swollen and my toes were bluish from the lack of blood flow as I seriously did everything to avoid moving my foot. I remember bathing was so hard, the burning/prickling sensation from water being poured was hard to handle as a little girl. After a few months of outpatient therapy and totally adjusting my lifestyle to accommodate for the pain, I was finally in the Children’s Specialized Hospital Pain Program.

The first day they did an evaluation and I had to move my foot, I screamed so loud. This was the first time it had been moved that much since the initial injury. I was there for three months and each day they pushed me past my limits. I did therapy for 4 or 5 hours a day and there was lots of crying and yelling at the therapists, but they are responsible for getting me back up on my feet. When I got discharged, I continued with outpatient physical therapy. I had a limp for three years and still treated myself like my foot was hurt. I would not run or play with kids during recess. In reality, that was just a mental block and I was actually totally fine.

One summer, I just decided to run around with my little cousins. It was a shock to everyone in my life but no one made a big deal about it. I had finally jumped over the last hurdle. Now, I am 17 and I love hiking and bike riding with my friends. I have climbed mountains and biked many miles through the hills in Europe. My life is completely normal, never any pain, and I actually forget that there was a time when I was restricted to what I could do.

What is one thing you wish those without CRPS/RSD would understand?

My journey started with a simple sprain. Many people get them, and they heal quickly. I was on crutches, a walker, and even in a wheelchair at one point.

“But Emily, it’s just a sprain.”

True-ish, it was just a sprain, but it turned into much more. It turned into a painful four year journey and healing process. I wish that people would understand the severity of RSD. I know it is hard to comprehend just how painful it is and why it is not easy to just “get over.” But I am sure anyone who has been diagnosed can agree that we had to work really hard to overcome RSD. Please trust me when I say it was not easy at all as it almost feels as though a part of my childhood was wasted overcoming it, but I know it made me stronger. To summarize, I wish people would understand that even though it may not make sense to them, it is something very real that I am very proud to be able to say I overcame.

What advice would you give to newly diagnosed Warriors?

This news really sucks and it will not be an easy journey, but it will be your battle to overcome and win. As a Warrior, it is possible despite the doubts you have now. I believe we are only given what we can overcome, so you will get through this. Just take it day by day, have a support system, and kick RSD’s butt!

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

I was only 10; at the time I was the youngest patient they had ever had in the pain program, but I worked my butt off to get past this. And it took me years. It took a lot of physical therapy and talking to a psychiatrist. But I wanted my RSD gone and I wanted to live a normal life. So that was my motivation. I know the journey is not easy. I also know that it is possible to overcome.

Walt Disney once said, “If you can dream it, you can do it.” This quote sat alongside my hospital bed, and then I wrote it on a ceiling tile when I was discharged. Basically, if you have the desire to beat RSD, you will. Just put in the hard work.

What activities or treatments have helped you find temporary or long term relief?

Swimming was a lifesaver. As a part of my program, we swam every morning at 6:30 a.m. (this is when my long day of therapy started). But as any kid, I loved the water. So at the hospital and when I got out, I swam. It got my foot moving, but it was fun and I had other things to focus on rather than my foot.

Simply walking helped too, especially on the beach. It was hard to do, but it was enjoyable and a really good way to get my foot flexing and moving.

Lastly, getting a massage, (because who doesn’t love a massage?). Once again, it was a lot of touching and moving my foot. This was really hard and each day I would set a goal to have it done for 30 more seconds, but it was a small battle that I was able to overcome and feel really proud of myself for. My advice would be to find something you enjoyed doing prior to RSD and make it your goal to get back to it by doing what you need to.

Anything else you would like to add?

Talking to other people who had RSD when I was first diagnosed really helped. Therefore, I would be willing to talk to anyone who is looking for that comfort of talking one on one to someone who already fought this battle. Even though it’s been a few years, we are all Warriors now and in this together. 🙂

Connect with Emily via Instagram at @_emilyycase.

Please consider making a donation to RSDSA today!

Written by the Inaara Jiwani for the RSDSA blog.

How and when did you develop CRPS/RSD?

I developed CRPS after a ganglion cyst removal surgery on my right wrist in October 2017. A few months after the surgery I noticed that for some reason the surgery site was still tender and I was feeling much more pain that I was feeling before the surgery. My wrist would feel numb and a tingling sensation and I started noticing I could not do simple daily tasks. I went in for a second opinion on my wrist and we had tried physical therapy, occupational therapy, a Ganglion Stellate Block, Cortisone Steroid Shots, and many more “cures” to help me with the debilitating pain. Nothing helped me and I was diagnosed with CRPS type 2. 

What has daily life been like since your diagnosis?

Since my diagnosis, life has definitely been a struggle. It has become a lot of “thinking twice” when I want to do an activity and making many changes to my daily life. I can no longer do simple tasks such as opening a water bottle or some days opening my car door, or even picking up a pen to write. In fact, I had to switch majors.

I was on the pre-nursing track ready to take my TEAS when I just could not handle the pain anymore. I couldn’t get recertified as a lifeguard, and I definitely could not help transport patients had I gotten into nursing school. I have definitely become much weaker, and it shows. It is hard to explain to people what CRPS is without being emotional, but it is what it is. This pain is the worst pain imaginable and I would not wish it on anyone. But day by day, I have to tell myself that it will slowly get better and that I am thankful to wake up to a new day each and every morning.

What is one thing you wish those without CRPS/RSD could understand?

The one thing I wish those without CRPS could understand is that no matter how much I tell you about the pain or what it feels like, you will never be able to fully understand, and that is perfectly okay. We are constantly trying to keep going every single day, especially with the constant support from you all. I try so hard to keep a smile on my face even though it gets rough. I have bad flare days and when this happens I want to be alone and shut everyone out. When I have bad flare days and start to push away those closest to me, it’s NOT personal. Sometimes with the pain, I just need to be alone. Words of encouragement are always appreciated, and I am so thankful for every single person in my life who is trying hard to understand exactly what Complex Regional Pain Syndrome is. 

What advice would you give to newly diagnosed Warriors?

Advice I would give to newly diagnosed warriors is to keep your head up high and keep going. It will get hard and I cannot lie about that. Some days you’re going to wonder, “why me?”. Other days you may be very emotional and you won’t have any energy. The pain may take over but you need to remind yourself to keep going. Keep going and stay positive. Understand that this is just a part of life and that everything happens for a reason. You are going to be okay. You have the support from those around you to keep you going and keep you smiling. It will all be okay. 

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

You are doing a phenomenal job at keeping up with everything. Life can get hard, but you are a strong person. You are only given what you can handle in life and knowing that every day is a new day should be a fresh breath of air. You are hanging in there and you leading by example how strong of a person you are. You are strong and you need to believe it. 

What activities or treatments have helped you find temporary or long term relief?

Activities that help me are swimming and some mindfulness/meditation techniques. Another activity that has immensely helped me is making resin art pieces. I started a small business over the pandemic called, “resIN by Inaara” in which I sell resin art pieces. When I work on resin pieces, all my focus is on that and it helps with keeping my mind away from the constant pain.  Learning how to manage the pain can be a struggle but once that activity is found, it’s like an escape. 

Anything else you would like to add?

I know CRPS is tough. I know it is terrible and you wish you were never diagnosed with it. I know at times you may feel trapped and feel as if no one truly understands. I know it can get tiring repeating exactly what’s wrong with you and answering questions such as, “Well how can you cure it?”. I know it gets frustrating when doctors can’t give you an answer and when all they can say is, “I’m sorry I can’t do much to help you. But you do understand that there is no real cure to this.” I get it all. It is tough. Some days you feel bad complaining about the pain thinking there are others who have it so much worse than you do. But learn to never give up. Keep trying. Every smile on your face is a win. Every minute that you are not in pain is a win. Lastly, you being you and being such a strong being is a win. Never lose sight of that. 

Connect with Inaara via Instagram at @inaarajiwani.

Please consider making a donation to RSDSA today!

Written by Dr. Katinka van der Merwe for the RSDSA blog.

I have treated almost 700 patients suffering from severe chronic pain to date. An interesting phenomenon I have noticed through the years is that many of my patients have suffered from sexual abuse and/or PTSD. This led me to study the link between physical and emotional pain, as well as sexual trauma. 

I want to quote Catherine Woodworth who said,  “Trauma permanently changes us. This is the big, scary truth about trauma: There is no such thing as ‘getting over it.’ The five stages of grief model marks universal stages in learning to accept loss, but the reality is in fact much bigger: A major life disruption leaves a new normal in its wake. There’s no ‘back to the old me.’ You are different now, full stop.”

This is not a wholly negative thing. Healing from trauma can also mean finding new strength and joy. The goal of healing is not a papering over of changes in an effort to preserve or present things as normal.  It is to acknowledge and wear your new life – words, wisdom, and all, with courage.

A special report published in Psychiatric Times in 2020 found that chronic pain complaints are common in patients with a primary diagnosis of PTSD, with prevalence rates estimated to be as high as 80%. Maybe the most cited model in the psychiatric field is the mutual maintenance model. This model suggests that chronic pain and PTSD maintain and exasperate one another.  One potential cause for this phenomenon is something called hyper arousal. This simply means that the nervous system is in a fight or flight state, which might elevate both pain and/or PTSD. Another study performed in 2008 found an elevated prevalence of chronic pain in women who suffered from sexual trauma.

Bria was a patient of mine who recently left care in full remission from CRPS. She suffered for nearly 21 years.  Bria also has a history of PTSD and past sexual trauma. She so graciously agreed to be interviewed and share her story with me, so that I may share it with you. Below is an excerpt of our interview:

Dr. Katinka: Bria, I want you to talk a little bit about your history of trauma and how you believe it played a role in developing chronic pain.

Bria: I was continually sexually abused for nine years from the age five to 14. I had a lot of health issues even before CRPS.  Then at age 11, that’s when CRPS started. From my own perspective over the years, I have always thought that my physical pain was my body’s way of silently screaming. I guess I would say outwardly I was not sharing my trauma. And I think when you keep that inside you, it has to show some way – and my body’s way of letting me know was through pain.

Dr. Katinka: Bria, I want to commend you for being brave and speaking out about this.  Sexual trauma in childhood is often something that we still feel is stigmatized. And we don’t talk about it. And because no one is talking about it, everyone who has suffered from this feels alone, and like this only happened to them. So, I think it is so powerful for you to be brave and stand up and say, “this happened to me and this is what my recovery looks like.”

Bria: Thank you so much. It has been a very powerful healing tool.  Since I have started speaking up about it, I have seen significant change.

Dr. Katinka: Bria, how intricate was that piece of your recovery – talking about the trauma, working with a therapist, working in our clinic – how important is it to address past trauma when also healing physical pain, in your opinion?

Bria: I think it is the highest priority. I was diagnosed with complex PTSD in 2012 and I started trauma therapy kind of right off the bat. And so, it has been nine years of trauma therapy, a lot of different, beautiful counselors who have walked right alongside me through this pain and it has honestly been excruciating digging up past trauma. But I think it is the very thing that has been slowly setting me free. 

When I was at the Spero Clinic, just being able to address the physical injuries that occurred even outside CRPS, from scar tissue to my x-rays, it was just altogether exposing a very dark time in my life and a time that I walked very alone in. Having a group of people around you embrace you and just address those injuries in such a tangible way was so, so healing. It was incredible.

Dr. Katinka: I always tell my patients that burying past trauma and thinking that you can just forget that it happened to you is like burying nuclear waste in your backyard. It is toxic, and it will find a way to be expressed in your life. If not through emotional and symptoms, then through physical pain.  

Dr. Katinka: Bria, how old were you when you first spoke out about what happened to you?

Bria: That was in 2012. I was 18 years old.

Dr. Katinka: So, until the age of 18, you carried this big secret around, and you did not share with anyone.

Bria: Nope, I had a very severe case of disassociation, oftentimes called disassociation amnesia. This was something that did keep me safe throughout my abuse. It was also something that really kept my trauma beneath the surface for me. I have had nightmares and different, very evident signs of the abuse throughout my entire life. But 2012 was really when I let myself even address it, which sounds strange, but that was my way really of surviving through everything I had experienced when I started letting myself address it. I that’s when PTSD got severely worse and really when I started my healing journey.

Dr. Katinka: Bria, as you know, I always tell patients that going through our program will be one of the most intense and difficult things they will ever accomplish in their life. Looking back, what was more difficult for you? The emotional healing or the physical healing?

Bria: I would say emotional healing. Absolutely. There is something so unnatural about purposely taking yourself back into those moments of horror and facing them head on. I know there is a level of, for me specifically, you are feeling like your younger self and you are feeling all the emotions of the abuse and it takes a lot of courage to be able to purposely walk into that. And not only that, but my PTSD has been so invasive, just like CRPS – from the hyper-vigilance to the flashbacks. Any moment of the day, I can just be pulled back into my abuse in very real ways. I would say my battle with that many years was much worse than CRPS was.

Dr. Katinka: Bria, what do you say to our listeners today who feel that it would be too painful or too traumatic to address that past trauma and that it would be easier to just keep it buried?

Bria:  I would say that a lot of things, but I would tell them that if they don’t already know it, they are incredibly strong. I would tell them that they are so worthy of healing. They are worthy to fight for that complete healing and a life that is waiting for them outside the claws of trauma. It is not going to be easy. It is tremendously difficult, tremendously painful, just sorting through those shattered pieces, but the freedom and the discovery of your true self is so worth it. There is no price tag. And you just deserve to fight to really get back what was stolen from you.  And my opinion, sorting through all of it is the very thing that will in return set you free.

If you are reading this and you have suffered from past trauma, I hope that this will help to empower you to stand up for yourself.  Your health and sanity and emotional joy is absolutely worth it.  

I want to end with a quote by Don Sarah that says, “There’s no time stamp on trauma. There isn’t a formula that you can insert yourself into to get from horror to healed. Be patient, take up space, let your journey be the balm.”

Please consider making a donation to RSDSA today!

Written by Lena Costantini for the RSDSA blog.

How and when did you develop CRPS/RSD?

I was 17 when I was diagnosed with CRPS after a bunion procedure on my left foot. 

What has daily life been like since your diagnosis?

Life has definitely had its ups and downs since my diagnosis. It is important to make sure you take care of yourself and know your limits. Do what makes you happy and don’t give up.

What is one thing you wish those without CRPS/RSD could understand?

One thing I wish those without CRPS could understand is that when we say we are in pain; we mean we are in pain. Don’t push someone in to thinking it’s all in their head because that is not the issue. It’s a diagnosis that everyone is still learning so much about and we need a positive support system. 

What advice would you give to newly diagnosed Warriors?

Don’t ever give up. Everything happens for a reason. It’s important to take care of yourself and educate yourself on the diagnosis. Communicate with your doctor and set up a game plan that best suits you. It can be really scary at first but it’s important to know that you have a whole community supporting you and cheering you on. 

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

Keep on striving. You are doing great! I applaud and am humbled by your experience and work to be a strong as you. 

What activities or treatments have helped you find temporary or long-term relief?

Lidocaine roll-ons and patches have become my best friend. They can be found at your local pharmacy. Personally, I like the small travel ones that I can either throw in my backpack or my purse!  It’s important to talk to your doctor about finding different pain management medications and techniques as well! 

Anything else you would like to add? 

Don’t isolate yourself. It can be very easy to shut down. Make sure to do what you love to surround yourself with positivity! 

Connect with Lena on Instagram at @lcostantini24.

Please consider making a donation to RSDSA today!