Hello Every One!

I will try to keep this as short and sweet as possible, but I'm incredibly long winded so I doubt that will happen! Let me introduce myself and just tell you a little overview of my CRPS story. My name is Courtney and I am 33 years old. I first developed my symptoms about 2 years ago, at the end of July, 2012. I was an avid athlete. I ran or swam nearly every day, I was on many athletic teams with my friends (softball, kickball, volleyball, dodgeball), I was active in some way practically every day whether it be zumba, dancing, aerobics, or somethings else. I loved to move. Towards the end of July I started to have a lot of pain in my right foot and ankle, but I had been diagnosed with Lupus when I was 20, so I had had a lot of experience with "mystery pain" and I often just worked through it. I had learned to just not complain about my chronic pain because there wasn't much they could do for me and being active was the best medicine for me. By the time the first week of August had rolled around I couldn't put any weight on my foot at all so I knew it was time to see the doctor. At first the doctor thought it might be a stress fracture, which made sense given all the running I was doing. The x-rays and MRI's however showed nothing and the pain kept getting extensively worse.

Fast forward to February of 2013 and my right foot is still in an orthopedic boot (had been that whole time) and the pain has increased to the point that I can't walk the few steps from the couch to the bathroom without being in screaming agony. My foot is swollen, constantly changing colors, very sensitive to touch and water, the skin and hair is changing. I have by this time seen several doctors and still do not have a diagnosis. The pain is incredibly intense and keeping me up at night. Finally I was diagnosed with CRPS. Looking back it seems like a no-brainer. Unfortunately, too much time had passed for many of the treatments to do much good, plus the therapists had been using ice on my foot from the beginning (even though it was excruciatingly painful). The doctors that diagnosed me did not have the best bedside manors... They basically told me I would be crippled for life, there was no hope for me, and that I may face amputation down the road. The doctors also weren't that knowledgeable about CRPS in general.

I also went through an extremely high stress period during this time. My then fiance heard my diagnosis, cheated on me, and then left me for the other woman because he couldn't handle "being with a cripple". (I guess he wasn't ready for the "in sickness and health" thing) That same week (while I was at my parents recuperating) my house was broken into and everything not nailed down was stolen. And then later that month I was forced to leave nursing school even though I had a 4.0 average, because it had just gotten to be overwhelming for me. We all know that stress can exacerbate CRPS and I really think that dealing with such an extreme amount of stress during my diagnosis and while I was trying to come to grips with everything just made my condition so much worse.

In the beginning I was not very knowledgeable about my condition. I thought I was, but I wasn't. I trusted my doctors when I shouldn't have. I believed them when I shouldn't have. In May of 2013, my doctors offered me a Spinal Cord Stimulator, telling me that it was my last treatment option for any relief. I should have done much more research. I thought I had done my homework, but I hadn't. I had the SCS implanted in September of 2013. At first I really thought it was helping, but then my CRPS started to spread. I think the surgery to implant the SCS is what caused my CRPS to spread. My CRPS is now in both lower extremities from the hips down and in both hands and forearms. It also sometimes is present in my throat and neck area as well as my lower back and abdomen. In just the last few weeks I have been having the burning pain and sensitivity to the water in my upper back. My stimulator doesn't even work anymore. I will never have it removed.

I am still looking for a better doctor to treat my CRPS, but every doctor I have tried to see has declined to treat me because of my "complicated case". They have all confirmed my CRPS, but nobody wants to take on my case bc it is too much work for them. I not only have all the typical CRPS symptoms, but I also have severe nausea and vomiting that is present on a near daily basis. I strongly suspect this is related to the CRPS and have even brought my doctors several peer-reviewed articles that suggest these symptoms could be the result of CRPS being systemic in nature. I have a strong suspicion these are being thrown in the trash as soon as I leave. They just send me to a GI doctor (who by the way has never heard of CRPS), who as soon as I tell him these concerns says "you should have told this to your neurologist"...hmmm

In positive news, exactly a week after my back surgery I met the man of my dreams. He has never seen me as a disability. He thinks I am the bravest, strongest woman he has ever met. We just moved in together this week and he takes such great care of me. I can finally rest!

I am looking forward to getting to know everybody on here and hopefully we can all help each other out! I am no longer working (I am in the process of applying for disability) so I find I spend most of my good days on the computer. And well, I find if I have a bad day I would rather vent to someone who truly understands than to the people who try so hard to understand but can't... those people need a break every once in a while! ;-)

Gentle Hugs!
Courtney