Hello, my name is Jim Laughlin, I am 46 years old and I have Complex Regional Pain Syndrome or CRPS, formerly known as RSD. A rare incurable progressive chronic pain disease that has turned my life upside down and inside out. Now I am known as a Spoonie.
I may have CRPS, but I am far from a scholar on the subject. This blog is based on my own personal observations and the research I have done. Because there is no concrete evidence on what causes it, how to treat it or cure it, I have pieced together this information as best I can. I will update, change or delete things as new information becomes available. If you see mistakes or have heard otherwise, please, let me know. I do have the disease and I can only do what I can do, so be patient with me if I don’t respond right away, but I will when I can.
A little about me:
My parents were both born in Scotland, who immigrated to the U.S. many years ago. I am first generation American, but the Scottish blood courses through my veins. I know you are thinking, “Does he have a kilt”. The answer is yes, and I do wear it on occasion…with boxers on underneath.
I am an amateur struggling writer who feels that writing is not just for the readers, but it is also cathartic for me to put my thoughts and feelings out there for others to read.
I am also novice computer geek who enjoys actually going outdoors to play. I enjoy car camping, fishing, golfing, cooking and I do enjoy eating. I also love to travel, but I do not fly. I am a car trip kind of person, the open road is always calling out to me.
My life with CRPS story begins on June 20, 2014. I was at work, and unfortunately, I rolled my foot causing an avulsion fracture of my left ankle.
Several weeks later, my ankle had healed and I was sent to physical therapy to get up and running again. Something strange started happening while at PT, instead of the pain going away, it started getting worse, much worse. All of my therapists and doctors were stumped as to why this was happening. I was eventually sent to a doctor for acupuncture, my current team of doctors did not what else to do with me.
If there are any ‘good’ parts of my story, the doctor I was sent to for acupuncture was one of them. He took one look at me and my foot and knew that acupuncture was not what going to fix my issues. He explained the possibilities of what was wrong with me. He got me off opioids and started me on Gabapentin, he knew if it was one of the conditions he was suspecting, it needed to be treated ASAP.I needed an array of tests to figure out what was going on with my foot. For the next few months, I was a guinea pig, getting poked, prodded, inspected and put into loud, strange machines.
I was scared. Eventually, the tests pointed in the direction of a disease called Complex Regional Pain Syndrome or CRPS. I was now terrified.
We, unfortunately, were too late, it took hold of me, it would not let go. It may never let go, only time will tell. I was now a Complex Regional Pain Syndrome patient.
Life, as I had known, was gone, I would now embark on a new journey ‘Life with CRPS’. I started to learn about a strange and complicated disease that I never knew existed. It became very clear to me, that this was not going to be easy for me, my wife, my family, my friends and even my doctors. There was going to be no easy fixes or answers. I had to dig in and do a lot of my own research because unfortunately there is not a lot known about CRPS. It is a disease that does not get a lot of attention in the media, nor are there enough consistent medical studies to get us closer to a cure. This disease actually goes all the way back before the American Civil War and all these years later it is still puzzling to most doctors.
I did know this, CRPS is a rare devastating disease affecting fewer than 200,000 people each year. I was now one of the unlucky 200,000. I now had a disease that wants to hurt me, it beats me down, it stabs me like a knife in my foot and leg. It makes me fear my own body and the excruciating pain.
Here we are almost 3 years later and I fight daily to keep my life as normal as possible. It is hard. I am not the same person that I used to be prior to the CRPS. My life has changed, my demeanor, moods, feelings and personality have been turned upside down and inside out. I have pain all the time, it does not stop. The symptoms of my CRPS are constantly changing, I never know what to expect. Along with the pain, I have muscle spasms, swelling, skin color and texture changes, abnormal nail and hair growth, muscle atrophy, speech impediments, memory loss, crying spells, mood swings…I have them all, they come and go at will.
CRPS is relentless on the mind and body. I fight back. I am happy to be alive. This disease may be part of me, but it does not control me.
This is what you and I NEED to do every day:
Keep a positive attitude. Stay busy. Exercise the affected limb. Be honest with your doctors. Talk with your spouse, family, friends or a therapist. Do your own research. Take charge and be your own Chief Operating Officer, the CEO of this disease. Knowledge is power. Be proactive with your doctor, work with our doctors as a team to take on this disease. We are never alone.
Understand that crying is okay sometimes as a release. Get to bed early. Have healthy eating habits. Have a sense of humor, sometimes laughing is the best medicine. Be stronger than the pain and remember to breathe through it. You CAN beat CRPS!
We must have strong support helping us. I have a wonderful support system, you need one too. My wife, Christie, has been my savior. She is, to use a cliche, my rock. Without her, this blog would not be happening. She encourages me to get up, keep busy, go out and be active. Yet, at the same time, she allows me to be who I am on the not so good days. She lets me lounge around, or sleep in and cooks my dinner almost every night. She works a full-time job, but always has the time and energy to take care of me. I also have family members who are always happy to lend a hand. They are a huge part of my support team, as well as my wonderful and caring doctors. I consider myself a lucky CRPS sufferer. It could always be worse, so I count my blessings every day, as you should too. You need to get a support system, through family, friends or someone like me.
Every day brings us closer to a cure. It will happen. This is a rare disease, that is not as well-known and talked about as it should be. We need to get the word out, make people aware of this awful disease. If we all work together and network to spread the word about CRPS, the medical world will take notice and finally put a bigger effort into finding a cure.
I appreciate you visiting ‘Life with CRPS‘, please share, like, comment or contact me with any questions you might have or you just need to talk.
You are never alone!
This blog is not designed to be used as a treatment guide or replace your doctor’s recommendations. A lot of what is contained in this blog will my personal opinions and observations and is purely informational. If you feel you might have CRPS, get to a doctor as soon as possible. To stop this disease from spreading or even beat it totally, a quick diagnosis and treatment plan must happen. There may be no cure, but treatment can help.