Written by Alejandra M. Cervantes for the RSDSA blog.
How and when did you develop CRPS/RSD?
I was diagnosed with CRPS three years ago, in October 2020. My CRPS developed through several injuries such as different ankle sprains and a fracture in the fibula. I was treated by an Orthopedic [doctor] as it all seemed it was an orthopedic problem. I wore casts, boots and received more than 150 physical therapies. None of the above helped me solve my problem, on the contrary, they triggered the nerve, and I began to develop sensitivity in my left ankle. As time went by the pain began to worsen, and started to expand through the left side of my body. I visited numerous Orthopedic Doctors, and they did not understand what the problem was because I tried every orthopedic treatment possible and nothing solved the problem. Later I learned that CRPS is not an orthopedic problem, it is a neurological problem, therefore nothing was minimizing the pain.
What has daily life been like since your diagnosis?
My mother decided to visit a doctor in the United States instead because my pain got worse with time. I was diagnosed at the Baptist Hospital in Miami, Florida by Dr. Christopher Hodgkins an Orthopedic Surgeon who specializes in foot and ankle. After the first visit he ordered another MRI, (I had done about five of them at home) and when the results came back, he immediately diagnosed me with CRPS and told us that it was a neurological condition and not orthopedic.
First he referred me to aqua therapy. I did 12 sessions, but they did not help, so then he referred me to Dr. Howard Popp who changed my life forever. Dr. Popp is a Pain Management specialist who focuses on patients with CRPS.
After I was diagnosed with CRPS, my life changed forever. I felt peace because after suffering from this terrible pain and frustration for such a long time and not knowing what was happening to me, I finally received a diagnosis and was certain that my pain was real. This diagnosis challenged me physically and mentally. I stopped playing soccer which was something I loved and my daily life changed since the medication I had to intake to minimize the pain was a high dosage. Dr. Vivian and Dr. Howard Popp understood my pain and frustration and during the first visit they told me that they would do everything that was in their hands to help me live a normal life free from pain.
What is one thing you wish those without CRPS/RSD could understand?
This condition affects your mental health tremendously; the pain is terrible. There are some days where you wish the worst because the pain is too much to handle. This condition is also called “the suicide disease” because of the high rate of people committing suicide due to the pain.
What advice would you give to newly diagnosed Warriors?
Some advice I would give to newly diagnosed warriors is to stay strong. You are not alone. I understand how painful it can be and you feel that your life is over but we are all in this together. The fact that you can get out of your bed is already a WIN. Seek not only for medical help but mental health because you will need it as well. Not everyone is going to understand your pain and that is okay. There is light at the end of the tunnel. Life and pain will eventually get better. You just need to be with the right doctors, follow their instructions and keep praying for this battle to end.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
As someone who was diagnosed with CRPS three years ago, I encourage you to find the doctors that will make your pain disappear, but also find other activities that will help you mitigate the pain; swimming, for example. Soul cycling has helped me a lot. Your mind, body and soul are connected, therefore in order for your physical health to be good your soul and mind should be in tranquility. Don’t let this condition take your life away. You are here for a reason and you deserve all the good things in life with or without CRPS or any other condition.
What activities or treatments have helped you find temporary or long term relief?
When Dr. Popp first saw me, he suggested to do nerve blockages. Since nothing was working my mom and I decided to give them a try. The first nerve blockage took the pain away for two months. Then I had a second one and it only took the pain away for two weeks. The problem with CRPS is that if you don’t treat it right away the pain can continue to expand or you can even start to experience it on the other side of your body. Since the nerve blockages didn’t work for me anymore, my doctors suggested to start medicine. The medicine intake was a high dosage, but since I couldn’t tolerate the pain, we were hoping the dosage would work, and it did work for about three months. Unfortunately, after that my pain began to get worse and worse. Some days it hurt to walk and I began to have muscle atrophy. I started with acupuncture, and it relieved the pain for a little while, but it came back within a day.
2022 was the worst year for my condition. I could not tolerate the pain, and it was affecting my mental health. This wasn’t life for me anymore and therefore I took a decision that changed my life forever.
The only option left for my pain to be reduced was the implant of a neurostimulator. This is a device, such as a pacemaker that goes in your spinal cord and it delivers mild electrical signals to the epidural space near your spine through one or more thin wires, called leads. Not all CRPS patients are eligible for this surgery, therefore a trial must be done before, and if your pain is reduced by 80%, then you are eligible. After my trial, I could barely feel any pain. Therefore, I decided to get the neurostimulator implanted.
I had my surgery on March 29th, 2023 and I couldn’t be more happy and grateful with my decision. Although this surgery changed many aspects of my life I get to live a “normal life.” I get to go bed without pain, I get to walk without any stiffness or pain and above all I get to live a life without pain because no matter what type of pain one suffers, no one deserves to live a life in pain.
Anything else you would like to add?
To everyone fighting against a medical condition, YOU ARE NOT ALONE. Take your condition in, fight with all your soul against it and win it. You were given that condition in your life for a reason and although the countless nights and days of pain may seem infernal, you were born for a reason, and you deserve to stay here.
The scars we carry represent who we are, where we’ve been and where we are going. We are entitled to be Warriors since our first cry. Never ever give up. That should not be an option.
Connect with Alejandra via Instagram at @alejandracervantesh.
Please consult your physician for personalized medical advice as individual outcomes may vary. RSDSA does endorse one specific type of treatment. Please visit https://rsds.org/research/treatments to learn more.