CRPS Sucks: The Somewhat Abridged Version of My Story

I suppose it would help to talk about who I was before CRPS, so who I am now can be better understood. I was born and raised in Oklahoma City, OK. I was an only child and I think I was always a lot harder on myself than any one else. I pushed myself very hard in school and generally I was the only one upset when I didn’t get A’s.

I graduated from high school towards the top  of my class. In Fall 2001, I began attending Oklahoma State University. I graduated from there in 2004 with a Bachelor of Science degree in Zoology and a minor in Mathematics. In case you are wondering … yes … I was a nerd. Shortly after graduating, I met my best friend and signifcant other, Spencer. My first job after college was working  as a Research Assistant at Oklahoma Medical Research Foundation (OMRF). I started working in a lab researching lupus and then moved to a lab studying the use of an MRI in the early detection of cancer.

In 2007, Spencer and I moved to the Seattle, WA area where after a few failed and unhappy career attempts in more research labs; I ended up working as a technical analyst for Boeing, a career move that would eventually change my future. After nearly 5 years in Washington we moved back to Oklahoma so I could be closer to my family.

In 2013 I got offered a position at the Boeing facility in Oklahoma City. Taking that job offer was one of the best decision I ever made! I found a job that I not only loved, but  one that I exceled at. Everything started falling into place for me. The opportunites I had and experience I gained was truly amazing. In less than a year, I got offered a new position at the company resulting in a promotion and more responsibilities. By November 2014, I was supporting two job roles and honestly I didn’t even mind the extra work. I truly loved my job.

… There was just one little snag …

Starting with the dislocation of my left knee at the age of 13, I began having reoccurring problems with both of my knees. I had periods where I would experience subluxation and occasional dislocation of one or both knees (usually my left). Around the age of 30, I started getting more and more knee pain. At the age of 31, I was referred to an orthopedic surgeon. After trying and failing with more conservative approaches, the surgeon recommended performing surgery to remove early signs of arthritis and to check for other issues. The surgery which took place a few days before Christmas in 2014 was a success. They determined that I had a torn meniscus and were able to fix it. Towards the end of January 2015 everything was healing nicely and I could almost walk normally and had very little pain.

Starting in 2013, everything in my life began to fall into place. I had a great job, good pay, good health insurance, and I had even begun building up my savings  We began talking about buying a home in late 2014 and were just working on saving up for a down payment. I keep emphasizing how great things were before CRPS for two reasons:

  1.  If you didn’t know me before CRPS and maybe even if you did, you may not understand the true personal toll I have had to pay.
  2. To demonstrate how truly unpredictable life can be and how quickly personal circumstances can change.

On January 26, 2015 I woke up in a good mood and I was even able to complete a few chores that I hadn’t been able to do while recovering from my surgery. As was my usual habit by 6AM, I was ready to head to work. After putting my stuff for work in the trunk of my car, I took a step backwards and somehow managed to trip causing me to twist and hyperextend my left (recently operated on) knee in order to prevent myself from falling. That was the moment my entire life changed.

I immediately knew something was wrong. The pain was absolutely terrible! After a day of resting, icing, and keeping my leg elevated there was absolutely no improvement, so I contacted my surgeon’s office.

On January 28th I was scheduled for an MRI and a few days later I was able to see the Physician’s Assistant. This is the part of the story I don’t fully understand. The PA told me quite matter of factly that I had torn a ligament and put me in an immobilizer brace. Why this part confuses me today, is that the MRI report never mentioned a torn ligament. I will never know how that diagnosis was determined. Two weeks later there was no improvement and at my follow up appointment the PA told me to keep the brace on and to follow up with the surgeon. Ice storms caused delays in me being able to see the surgeon andmy knee kept getting worse. Ice gave me a little relief so I kept that on my leg 24/7, which is actually a very bad thing to if you are diagnosed with CRPS. There was a point where I was in so much pain that I had to go to the ER. I was given an injection to help with inflammation and sent home.

Finally in early March 2015, I was able to see the surgeon. He walked into the room, quickly flipped through my MRI and told me that there was nothing wrong with my leg. After being told  put in an immobilizer brace for over a month by his staff and then to be told that there was nothing wrong with me. I started crying and asking him what  to do and he looked at me rather coldly and started to walk out of the room. Most days I probably would have stayed silent, but for whatever reason on that day I pulled out my phone and asked him if he could take a look at a couple of pictures of my leg.

This is what I showed him:

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It took only a quick glance at those pictures for my surgeon’s demeanor to completely change. I went from a hysterical drug-seeking lunatic patient to someone who actually needed medical help. He told me that he believed that I had something called RSD*. He then referred me to a pain management specialist and t0 a physical therapist. He also convinced me that a second surgery would  help to rule out any other possible problems. This really was not the best plan for a patient newly diagnosed with RSD/CRPS, but I would only learn that later on.

*RSD or Regional Sympathetic Dystrophy is an older name for Complex Regional Pain Syndrome (CRPS).

He may not have been my favorite person, but my surgeon gave me one really brilliant piece of advice:

“Make sure to bring pictures like the ones you showed me anytime you are being seen by a new doctor.”

Since that day I have taken hundreds of photographs of my legs. Anytime they start acting up or changing color I try to take a picture, especially when something new happens.

A Collage of My CRPS Symptoms

Like most patients who are newly diagnosed, I had absolutely no idea what I had been diagnosed with. I wasn’t even sure if I had heard him correctly and by the time I got home I couldn’t remember what ir was called or even the acronym. I ended up having to contact their clinic later that day in order to clarify what the thing he diagnosed me with was called. That night I began the arduous task of educating myself on the diagnosis. The first thing I found out was that RSD was an older name and that the illness is now referred to as CRPS.

In the world of chronic illnesses and rare diseases, you learn very quickly that you must be your own advocate and researcher. Not many physcias will know what you are talking about when you mention CRPS. Of the doctors that are familiar with it, a large percentage have outdated and/or incorrect information. It is a frustrating world, doubly so when your friends, co-workers, and family don’t understand what you are going through. The only support I had in the beginning came from Spencer.

Up until November 2015, I kept trying to hold onto my job and keep working but my body would not cooperate. I started having to miss more and more work because of the extreme exhaustion of trying to keep up with everything and the constant pain. I found myself crying nearly every day at work simply because what had been so effortless before became extraordinarily difficult. I also found myself crying everytime I talked to my manager because I felt like I was letting everyone down.My emotional, mental, and physical states all led me to take a leave of absence and I haven’t been back to work since November 2015.


One thought on “CRPS Sucks: The Somewhat Abridged Version of My Story

  1. So much of your story could’ve been written about me. Prior to my diagnosis of RSD, I had recently found a job that I absolutely loved (working as a Behavioral Specialist Consultant & Mobile Therapist for children on the autism spectrum)! However, I tore a ligament in my left knee in October 2006. After months of physical therapy, my kneecap still kept popping out of place (nothing new … I had dealt with subluxation/dislocation of the kneecap since I Spring 1993). I had surgery to reconstruct the ligament in January 2007 & developed RSD 6 weeks later. My injury had required me to take a leave from work in Oct 2006 and I have not been able to return to work since then (my last day of work was my 30th birthday). I was referred to a pain clinic, which did very little to help (they had me on very high doses of the strongest narcotics possible at the time). Thankfully, my family doctor knew of a neurologist in my town who is very knowledgeable about RSD (& my family doctor was able to make a referral for me to see him without breaking my contract with the pain clinic) … after my first meeting with the neurologist, I promptly discontinued my agreement with the pain clinic. My neurologist trained under one of the top 5 RSD specialists in the world. Through a “non-narcotic” medication regimen & 5-day lidocaine infusions when needed, we have been able to maintain my RSD at a mostly tolerable level (usually around a 5 on the 10 point pain scale, except when I have a flare-up that necessitates the lidocaine infusion). I pray that you are able to find something that works for you. Please feel free to contact me if you would like someone to vent to or if you’d like more information on the treatments I have done. Take care.

    Liked by 2 people

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