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 - You are stronger than you think

New CRPS/RSD Journey

2020-03-13

NEW PERSONAL CRPS/RSD JOURNEY

This month we have 3 personal CRPS/RSD journeys to give you all to read which is great, and we thank each one of you for your courage for wanting your story to be placed here on the Burning Nights CRPS Support website.

This is the 2nd New Personal CRPS/RSD Journey which has been written by a gentleman in Canada called Ross. Hopefully the male CRPS sufferers who read Ross’s story will realise that it is possible to carry on with your new life of having a chronic pain condition like CRPS/RSD. Here is his story:

Painfully Optimistic

Latest CRPS RSD Journey - Ross

 

My name is Ross McCreery and I want to thank Victoria for giving me this chance to share my story with all of you on here. There are many of you out there that will be able to relate to a lot of what I say here today and my hope is that you can find a common thread and realize that you are not alone in your journey. I want to share this as openly and honestly as I can with you and take you into my world for just a moment!  

Ten (10) years ago I was diagnosed with CRPS, a chronic pain condition with a mind of its own!  Up until that point things had been going well, and life was going along as expected. I had a successful career and my wife and I were starting our family.  It wasn’t until my wife and I had arrived home from China after adopting our first child where things started to go terribly wrong! I had gone in for what was supposed to be a routine procedure to have a few cysts removed from my wrist in my left arm. After the surgery I developed swelling and discoloration up my entire left arm and pain that I can’t even begin to describe. My arm began to burn and I started getting shooting, stabbing pains. I went back to the surgeon who did the surgery and was dismissed and told that it was all post op recovery! In my mind though I knew something just wasn’t right.

I spent almost two (2) years going from doctor to doctor and nobody seemed to be able to diagnose me. It was a lesson in frustration and with every passing day I was getting to the point where I was desperate for answers. I was told everything from that it might be blood clots; to the most common answer now which was “it was all in my head”.  I had probably gone to see every specialist under the sun and nobody knew what to tell me or how to treat me. All the while things continued to get worse. The pain was got worse and I lost the use of my left hand. I was running out of options until I flew out to see a specialist in Vancouver, B.C. while visiting my family. Within about the first 5 minutes of seeing the Dr I was diagnosed with CRPS and my world was turned upside down!  

I’ll never forget walking out of his office that day, all of a sudden everything just hit me. My head was spinning and I was feeling every emotion under the sun. He referred me to a Dr. in my own city but even he didn’t know anything about CRPS. So it seemed like I was back to square one where nobody could treat me. I went through nerve blocks, scans, and various other treatments to try and reduce the pain and swelling but nothing seemed to be helping. Things only seemed to get worse and now a whole host of symptoms started. Sensitivity to noise, and touch could make my skin crawl! It was as if my nervous system had a mind of its own. I had already gone on long term disability with my job but the decision was made that I now had to go off on permanent disability. It was pretty clear that my full time job was now going to be taking care of myself.

Learning to adjust to my new “Chronic Life” wasn’t easy and so I continued to struggle to find treatment. My world was starting to spin out of control and I had to find help to work through the mental side of things. All of a sudden the course I had envisioned for my life had changed in the blink of an eye, and I wasn’t having an easy time adjusting to that. It wasn’t long after that when the CRPS traveled into my left ankle as well. I couldn’t walk and needed to use a cane to go short distances.  I fought with my own mind trying to stay positive, telling myself that I would get through this. All the while I was trying to adapt to all the changes that were taking place. I had to adapt to the most basic of things, like learning how to cut my food or tying my shoes. Things that we take for granted!  My story could go on and on if I didn’t leave a lot out in telling you about all the things that have happened over the last nine and a half years. The easiest way to sum it up would be to say that I’ve had to go through every major emotion there is. Ones like anger, fear, sadness, hope, happiness, and being desperate just to name a few! There have been roadblocks along the way but I’ve always found a way around.  Support from family and friends has been incredible. I choose to see the positive in everything instead of dwelling on the negative. I often tell people the last several years have been like riding a roller coaster with all kinds of highs and lows along the way.

Eventually after several years I was able to find a neurosurgeon who knew about CRPS. The Dr recommended a treatment that involved having surgery to implant neuron stimulators which combined with medication would help in trying to control the pain. In my case I needed two stimulators, one to control the pain in my leg and one for my arm and hand. The process has taken about two years and ten major surgeries! I’ve had a few complications along the way and so it’s taken longer than normal to complete all the surgery. My life now is based on managing the pain and taking one day at a time. I have good days and bad days but I have hope and am in a better place than when this all started.

Who I was when all of this started and who I am now are two different people! At the beginning I was scared and confused and now I’m confident and passionate about educating people and sharing my story which is much more extensive than what you are reading here.  Not only is my hope to raise awareness with Chronic Pain but to educate and bring about change.  If you want to learn more about my journey over the past nine and a half years then please feel free to visit me at my blog:- ROSS’ BLOG Available from:< http://painfullyoptomistic.com >

Just remember you are never alone!

by Ross McCreery

New Personal CRPS RSD Journey - You can do it

New Personal CRPS RSD Journey – You can do it

Thank you so much Ross for taking the time to write your story and send it to Burning Nights to allow us to share if with everyone. It takes a lot of courage and effort to write your CRPS/RSD pain journey for others to read but some people find it therapeutic and a distraction from their chronic pain.

Please feel free to share, post a comment, post on Social Media or like on social media.

Last Updated: 03/06/2015

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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. Irene b

    Thank you Ross for sharing your story I found your incredible journey through this terrible thing called CRPS lovely to read. As you say there is so many others that can relate to what you have said in your story.
    I know that Victoria on Burning Nights is going flat out to raise awareness for CRPS/RSD sufferers and is trying to bring about change. With the support of others like yourself I am sure it will be possible.

  2. tigger1

    Thank you Ross for sharing your story. When I read the stories that are published on this site I am always struck by the positive attitudes you all have. The pain is something that no-one who does not have CRPS can possibly conceive what it is like.
    Thank you once again .

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