Living with RSD

2 years ago, March 2007. A beautiful day. A drive in the van with my husband and our 2 year old grandson for a day together and then, out of nowhere, in an instant, my life has changed FOREVER! A speeding car and an inattentive driver running a stop sign had left me with several dislocated vertebre in my neck, an injured shoulder and some kind of strange, horrific pain in my left arm.

That pain was later to be diagnosed as RSD I’ve had 7 surgeries since my accident, some of those to repair the neck and shoulder but a couple for treatment of the RSD with a spinal cord stimulator. I am where you are - in constant pain in my arm that has NEVER gone away. It has NEVER gotten better. It is, instead, getting worse. It went from the burning pain to feeling like I had a vice grip on my upper arm. It’s in my entire arm and hand. It affects my fingers. I’ve lost all the hair on my arm, my nails grow funny. The motor skills in my hand aren’t what they used to be. My arm “hangs” strange and I struggle typing these days and I have yet to try playing piano (I used to play 2-3 times a month on a worship team at our church), but, I am a most fortunate one.

I see a wonderful doctor who specializes in RSD at one of the nations largest pain clinics. I started like many of you on all of the pain pills, had nerve blocks in my neck, got a 6-week epidural in my spine and then went straight to the spinal cord stimulator after none of those treatments were helping and I was getting worse in a short period of time. My doctor got me on the “fast track” to treatment which is key! Keep a positive attitude!

This is not an easy disorder. It seems strange that there are so many cures and treatments for so many diseases and yet no cure for RSD and so many variables in treatments for patients. I can’t stress enough that getting with a good pain management specialist is very important. I am doing better but I still am in constant pain and discomfort. I still take pain and nerve medication but I am learning to manage my pain and not let it manage me.

I have a busy life. I’m a professional business woman who can’t afford to stop my life and yet I’ve found myself doing just that. For almost the last 2 years I have missed work for 3-4 days each week that I haven’t been in a hospital, I go to physical therapy 1 hour (each way) away for sessions 3 times a week that last 1-1 1/2 hrs each. I see my pain doctor frequently who is 3 hours away (1 way) and the list goes on. You all know what I’m talking about. But you can do this! You have to keep working through this pain and keep moving on with your life. I know personally that the more I have stopped in the past and dwelt on how much I can’t do because of this, I am the loser in this. There is so much I can still do, I am just learning to do it differently and you can too! Don’t give up.

My life is not the same, it IS changed forever. I have a wonderful support group of friends and a great husband who all, like me, don’t understand all of this unfair disorder but we’ve learned to laugh at times together and cry together but we’re still TOGETHER in this…just like all of us who are going through this. We’re all together and our lives are changed, forever, but we can learn to live differently with pain.

You have RSD, don’t let it have you!