Introduction to my life with CRPS

   Up until January 2010, I was very much an ordinary twenty-five year old. I will fully explain my purpose for this blog in the last paragraph, but I want to share some of my journey first. I've always been very independent and a go-getter. My then fiance & I were living in our first home, just purchased the previous October. I was working full time, about 50 hours a week, as an assistant manager in a retail store. It was the start of a new year & I was finishing plans for our May 2010 wedding, much of which was hand-made & detailed by myself. As most bride's know, a wedding is somewhat of a production and mine was nothing short of that with myself both the director and the star of the show. I'm a bit of a perfectionist, although if you ask my now husband, he'll say I'm just plain anal retentive! Lol. On top of my own wedding, one of my good friends was getting married one month before me and I was set to be a bridesmaid. I wanted to be the best maid I could & help with whatever she needed. This is just to give you an idea of what was going on in my life up to this point. I was a busy-body and always on the go, needless to say.

   I know this is going to be a long first post, so I will try my best to sum up what I could turn into a book. I was at work in January when I first started noticing the pain in my left foot. It started out just as achy, then over time progressed into a sharp pain and my foot would go painfully numb. Then in February, it started happening with my right foot as well. I noticed that I had a lump forming on the outside of each ankle that was painful to the touch. Both of my legs were swelling quite a bit from the knees down as well. I went to my PCP who sent me to an orthopedic surgeon for an MRI. Turns out the lumps were tumors.

   Now I had two options: 1) have surgery to remove the tumors that could potentially be cancerous and hopefully that would fix the pain, or 2) try to bare through the pain, see how things go and just monitor the tumor growth. A big part of my decision for surgery was that it was getting more painful to walk and wear shoes every day. I could barely deal with the pain which was made worse by being on my feet 10 hours a day at work. By March, my feet had started turning blue/black, especially near the toes and my feet were cold as ice constantly. An even bigger part of my decision was my upcoming wedding. It was only a couple months away & I couldn't postpone it- so there was the thought I wasn't even going to be able to walk down the aisle. My husband & I made the decision that surgery as soon as possible was best. On April 21, 2010 I had the surgery to remove all of the tumors at once. By that day, I had a total of 3 tumors on my right foot and 1 (the biggest) on my left. They turned out to be benign, fatty tumors (lipomas) so that was a relief. Now everything would be fixed, right?! Little did I know this surgery would lead to the worst pain I've ever experienced & as of now, two of the most difficult years of my life.

   Two weeks after the surgery I knew something was very wrong. A new, much worse pain had developed in both feet near the incisions and there were parts of my feet I had no sense of feeling in. When I talked to my Ortho's assistant about this, he said there may have been some nerve damage during the removal due to the size and location of the tumors, but that it would eventually "fix" itself as the nerves repaired themselves. I did limp down the aisle at my friend's wedding just days before my surgery and we did go ahead with our wedding, barely a month after my surgery. It wasn't easy & I was in a lot of pain, but it was so worth it. It turned out beautiful! Fast forward to July 27, 2010. I had a few tests, including a bone scan and was diagnosed with both Chronic Regional Pain Syndrome (CRPS) and Raynaud's Phenomenon. I saw my first pain management doctor and started my first series of three nerve blocks. I had about 50% success with these and after the doctor said our only next option was a spinal cord stimulator, I thought I needed a second opinion as this was a very serious surgery. In September I saw my new PM doctor at Emory University in Atlanta. I will call him "Dr. S". He's amazing and wanted to try everything possible for me before the SCS. We weren't out of options.

   We tried 2 more nerve blocks and a radio frequency ablation with Dr. S. Again, I had about a 50% success rate. We were prescribed all of the conventional medicines as well as some medicines experimentally hoping for some good results. Some may have helped a little bit, but most either didn't have any effect on me or just made things worse. Pain medicines weren't helping either. Now it was January 2011. We decided at this point to look into the SCS trial, but eventually opted to put that on hold for more tests and a few more opinions as recommended by a couple of my doctors. I just had so many weird symptoms and odd test results that we thought perhaps my diagnosis was wrong all along. By this time however, my pain had spread from my feet up my legs and into my hips as well.

   As I may have left a ton of details out as not to bore you too much, and 16 specialists later; my SCS trial is officially scheduled for December 6, 2011. I have my pre-surgery consultation this Friday, November 18th. This leads me to the reason for this blog. I am dealing with a disease that affects a truly astonishing number of children and adults that even fewer people understand. I want awareness and a feeling of hope for all of us. There is no cure yet, but I know there is strength in numbers and if we all band together I know it will make each day easier to bare. I know the feelings of hopelessness, depression, anxiety, constant pain and the loss of friends who don't believe anything is wrong with you. I want to reach out to others and hope that perhaps through my journey, it may help someone else in some way, whether it be advice, someone to cry to or just to vent their frustrations with. I also have a huge goal. I want to be a mother more than I want anything else in this world. There is not a lot of literature on the subject combined with CRPS and a spinal cord stimulator. I want to change that. Part of my goal to motherhood is to share every bit of that journey with you from the SCS trial, to planning for a baby and God willing, giving birth. I am terrified of how pregnancy may effect my CRPS as well as vice-versa. I hope to perhaps ease some others' same fears by giving one perspective on the whole process. I enjoy feeling like I'm not alone and I imagine so do many others. From now until the trial, I hope to share more details of my story thus far, some struggles I've had and answer any questions others might have. I will also try to detail every bit of the SCS trial, including posting pictures and possibly videos. I appreciate any feedback and hope this can help even one other person facing this disease. Thank you for reading! ;o)