There’s So Much More Out There for Me to Live For
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.
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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.
I hope you are feeling much better by now. I broke my hand and developed CRPS. It responded well to the nerve block. I did two years of Occupational therapy as well. They used Motor Imagery and some other techniques to help me.
I’M A 43 YEAR OLD FEMALE THAT HAS BEEN BATTLING WRIST PAIN AFTER BREAKING MY RADIUS AND NEEDLESS TO SAY HAVING 5 SURGERIES WITH A COMPLETE WRIST REPLACEMENT AND I’M STILL EXCRUIATING PAIN ALL DAY LONG. LIKE YOU GUYS KNOW THAT IT HURTS TO BARELY TOUCH IT, DISCOLORED, SWOLLEN, NUMB AND CAN BARELY HOLD ANYTHING WITH MY WRIST.LIKE EVEN MY CELLPHONE IS HARD TO HOLD FOR A LONG PERIOD OF TIME. I WAS DIAGNOSED WITH CRPS A FEW YEARS AGO BUT LATER MY ORTHOPEDIC WHO DID MY LAST 2 SURGERIES SAID THAT I DON’T HAVE CRPS. SO I THOUGHT I WAS GOOD BUT THE PAIN IS CONSTANTLY THERE. SO I THOUGHT I’D JUST HAVE TO LIVE WITH THIS CHRONIC PAIN. FAST FORWARD I RECENTLY SAW A NEW PAIN DOCTOR AND TOOK 1 LOOK AT MY WRIST AND SAID THAT I HAVE CRPS.AND HE COULD TELL THIS BY LOOKING AT THE COLOR OF MY AFFECTED AREA ON THE ULNAR SIDE OF MY WRIST. HE’S PLANNING ON DOING SOME SORT OF INJECTION, I FORGOT THE NAME, TO HOPEFULLY REDUCE THE PAIN AND INFLAMMATION. HE ALSO MENTIONED A NERVE STIMULATOR TO CONTROL THE PAIN.I’M A LITTLE LEARY ABOUT IT, BUT MIGHT GIVE IT A TRY IF IT GETS TO THAT POINT. I’M NOW ON GABAPENTIN, CELEBREX AND A MUSCLE RELAXER TO HELP WITH THE PAIN. SO FAR NO RELIEF. I’M ALSO ON PERCOCET AND THAT DOESN’T EVEN WORK. AND OF COURSE BEING ON NARCOTICS FOR A LONG PERIOD OF TIME YOU BECOME DEPENDANT ON THEM AND THAT OPENS UP THE DOOR TO HELL. SO IT’S LIKE DO I TAKE SOMETHING STRONGER FOR THE PAIN AND DEAL WITH THE AFTERMATH AND TRY OTHER FORMS OF TREATMENT ALONG WITH NARCOTICS. I DON’T WANT TO BE ON NARCOTICS FOR THE REST OF MY LIFE BUT IT TAKES THE EDGE OF THE PAIN TEMPORARILY. DOCTORS ARE AFRAID TO INCREASE THE STRENGTH ON THE NARCOTICS BECAUSE OF MY HISTORY OF ABUSE. BUT I FEEL LIKE I NEED TO HELP WITH THE CHRONIC PAIN I’M IN ALL DAY LONG. SO I’M KINDA AT MY WITS END HERE AND DON’T KNOW WHICH WAY TO GO. I TELL YOU WHAT I HATE LIVING WITH CHRONIC PAIN IN MY WRIST. IT’S VERY DEBILATING TO SAY THE LEAST. SO I ASK YOU KINDLY TO KEEP ME IN YOUR PRAYERS THAT I CAN FIND THE RIGHT COMBO TO DEAL WITH THIS PAIN.
THANK YOU VERY MUCH