Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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Personal CRPS/RSD Story - My Story

NEW CRPS/RSD STORY

2020-03-12

NEW CRPS/RSD STORY

 

Our new CRPS/RSD story for June has been written by a lovely, positive and strong lady; Carla Valentino from USA. Burning Nights – CRPS Support is only possible through CRPS/RSD sufferers like Carla who help raise awareness for this debilitating condition.

 

Thank you Carla for sharing your story that really shows a test of character, test of faith and test of human strength to overcome and live with such a condition like CRPS/RSD. I do hope you all enjoy reading other sufferers’ stories to help show you that people can live alongside CRPS/RSD.

 

New CRPS RSD Story - Carla Valentino

MY STORY

 

My name is Carla Valentino, I’m forty seven (47) years old and my family and fashion mean everything to me. They are both my love and owning a tee shirt business was part of my passion. Although being a parent  is the most important job I will ever have. As parents we are always at events and attending birthday parties but I never knew that going to a birthday party would change my path forever. Life is always challenging and we never know what will be thrown our way.

 

February of 2008 my daughter was invited by a classmate to an indoor bounce house birthday party. There were different themed bounce houses. We were having a blast with our friends until we were in the basketball house. My life changing journey was about to begin.

 

When I came down from throwing the basketball, my foot stuck and my right foot badly twisted. I screamed so loud that later someone told me my scream sounded like someone was being murdered! The pain was intense. My foot immediately started to swell and it was turning colors. A dear friend of mine was there, she’s a nurse and she took charge. She drove me to the ER. When we got to the ER, my then boyfriend (we later married) was there. My foot did not look good. It looked as if someone had run over it. From the look of my x-rays, I did not break or fracture my ankle or foot. They put me in a cast and told me to make an appointment with my primary doctor. 

 

My primary confirmed I had a severe sprain. What a surprise! He then referred to an orthopedic. He agreed I had a severe sprain. He gave me instructions to ice my foot, prescribed something for inflammation and prescribed physical therapy three days a week. My mom came to stay with us for a while to help. Her driving me around was very appreciate and she took me to every therapy session. My doctor eventually changed my cast to a boot but I was unable to walk. We bought a wheelchair and crutches to help me get around by driving around. Eventually I learned how to drive in my neighborhood with my left foot. I drove around until I was comfortable. No matter what, I had to keep as much independence as possible.

 

My plan was that I would go to therapy, do whatever they say and completely heal. The pain I was experiencing was like nothing I had ever felt before. It felt as if someone was slicing me with a hot poker stick and running over my foot at the same time. Growing up I was a tom boy and I had injured myself before and have had several surgeries so I know pain. But I healed from them all.  As the months are going by, my foot was not healing and my pain level was very high. 

 

I was scared that something was wrong and I was right. When I went to see my doctor for a follow up after therapy, I was diagnosed with RSD. l remember those words but I don’t remember being told what RSD was and what it entailed. 

 

I Googled it as soon as I got home, I hit every criteria. That’s when I knew my life would never be the same. More importantly my families lives would never be the same. Our journey with RSD was just beginning. 

 

My orthopedic doctor referred me to a very well known local RSD doctor. Which I was surprised that there was actually a specialist in my area because RSD is not common.

 

I was started on a series of lower lumbar shots, which for some people helped block the nerve, but after six shots I wasn’t feeling any relief. He prescribed different medications, compounds and numbing patches, still nothing. I was then passed off to yet another doctor. Next I was injected with another series of shots, this time with Ketamine. After I received zero results, I tried a trial spinal cord stimulator, in fact I’ve tried two by two different doctors. I had the worst reaction to both of them! Every time I moved, I felt as if I were being struck by lightening. My foot continued to look and feel as if someone was constantly driving over it. Over the years I have been seen by four RSD specialists. Between them I have had twenty three injections, including fish poison. On top of it, I acquired Allodynia, extreme sensitivity to touch. My pain increases by a slight touch, my clothing can be painful, and a breeze across my skin causes extreme pain.

 

When I went for a follow up, my doctor told me I was his first failure. I will never forget those words. It really brought me down. I knew my illness was wearing on my family too. One day I was cleaning out my son’s room when I found a file marked, “Top Secret Classified”. My heart was pounding. I had no idea what I was going to see when I opened his file. On a piece of paper he wrote: “I want my mom to get rid of RSD”. I started to cry. This really broke me. I knew this was also affecting my daughter because in my journal entry from 9-23-08 I wrote: “The kids have been asking more and more when my foot is going to get better. I tell them I am working on it and hopefully soon I can get back to normal”. The emotional damage something like this brings is tremendous. When your kids are hurting, you hurt more. What we were going through inspired me to write and dedicate a children’s book, “When Can We Run, Dance and Play Again”? for my kids. To let them know how much I love them and that mommy will never give up trying to get better. I know I have to keep fighting, hoping one day I will find relief. Not just for myself but for my loved ones.

 

After my failures, I researched other treatments. Trying Acupuncture, Structural Energetic Therapy, cranial therapy, yoga, cleansing diets, Hyper Baric Oxygen Chamber, laser therapy, chiropractic, Calmare Therapy and hypnosis. All out of pocket and with no results. But going through hypnosis did help me mentally. I learned how to visualize, understand and be aware of my breath and to relax. 

 

I had no idea one Christmas night I would need to use the tools I learned from therapy. After all the festivities were done and we were settling in for the night, my foot started to cramp, and uncontrollably twist and turn.  It looked as though I was being possessed! It’s hard explaining how much pain I endured. I was out of mind. My husband didn’t know what to do. He gave me my medicine and was trying to help calm me down. I was crying so loud, my family came in our room and couldn’t believe what they were seeing. My foot spasming in mid air. Watching me be tormented by my own body was horrific. I concentrated on visualizing being at the beach and breathing. After several hours of my foot moving, twisting, bending, burning, stiffening and causing enormous pain, it calmed down. The aftermath of the pain was unbearable. I realized I would be dealing with these uncontrollable spasms, anytime, anywhere. There have been numerous occasions when my husband, friends, and even coaches from the kids school have had to carry me out of different events.The aftermath of the pain was unbearable because it caused me to have anxiety, and when I’m going out, I’m always afraid I will have a spasm

 

Coping with a chronic illness, losing my business, taking medication with all of the side effects wears on your mind, body and spirit. People always tell me I’m strong but many times when I look in the mirror I see a deflated person. It’s hard to feel good about yourself when you are in constant pain. RSD pain is very complex and can destroy you as a person. Because RSD is nerve related and is in my foot, I can’t wear “everyday” shoes. Mostly I wear soft, fuzzy boots, walk slow and with a limp. There are days when my leg is extremely stiff and swollen and I am bed ridden. I have been laughed at, pointed at and told because I look a certain way I can’t or don’t have pain. It’s devastating as a person to deal with being singled out. Many times before I leave my house I feel as if I am putting on a mask, disguising who I am. It brings on depression and low self esteem. I try to educate those who do care and those who are interested in learning about something they have never heard of and know nothing about. 

  

 To help me with my depressed feelings, I have a strong faith, I surround myself with great people, journal, listen to music, sell a clothing line from my house for a friend of mine, find laughter, spend quality time with my kids and I make sure I don’t lose who I am as a person. I allow myself to cry but always find the strength to push myself. For the most part, I have to dig deep to find strength and I do. I will never give up hope. One day, my belief is that the right doctor, researcher, or person, will find a cure and help thousands of others who also suffer from this debilitating illness.

 

No one knows why my body doesn’t respond to any type of treatment.  It’s progressed up my right leg and I’ve recently endured a six hour spasm. Every three months I see my doctor. As of today, he doesn’t have any new therapies. Who knows what the future will hold.

 

My journey with RSD continues. Everyday I am thankful for my family and friends. I continue to keep hope alive by helping spread awareness. It’s important for me to connect with others that have RSD. In fact, last November (NERVEmber- RSD awareness month) we went to the Madrina Fashion Show In New York City benefiting RSD. It was amazing to see up and coming designers from around the world come together for the RSD community. The room was filled with family, friends and those who battle this debilitating disease. I never wanted the night to end! It was exhilarating, exciting and emotional. Tears were rolling down my face because I was overwhelmed with emotion, in a good way. It showed us that there is and will continue to be more awareness and one day there will be a cure!

 

I believe we are here for a reason and finding out the reason is part of one’s personnel journey. It’s something each person has to figure out. The challenges thrown our way gives us strength. When we believe in ourselves, we can help others find the strength to push forward

 

By Carla Valentino

Thank you so much Carla for writing your CRPS/RSD story for Burning Nights and their followers! I do hope other sufferers can take away a lot of information, positivity and strength from your story.

Please do share the New CRPS/RSD Story written this time by Carla Valentino, make comments or post on social media. Thank you!

Last Update: 28/05/2015

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About the Author
As the Founder of Burning Nights CRPS Support, I want to help all those affected by this devastating condition which includes those living with CRPS, their relatives, partners, carers and friends. I'm also barrister, advocate & have lived with Complex Regional Pain Syndrome (CRPS) since 2003. I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Lisa

    How can I reach you, re:CRPS?

    • Victoria Abbott-Fleming

      We have sent you an email Lisa to the email address you gave to post the comment. Hope to hear from you soon.
      Best Wishes, Victoria
      (Founder of Burning Nights and 1 of the Trustees)

  2. Karen Sawyer

    Thank you for your story. I to have this illness and it brings me down at times. I tell everyone I live like this so maybe someday someone else won’t have to.

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