Hi. I am Chris. (Cricket is a childhood nickname. Feel free to call me by either name. I answer to both.) I have had RSD/CRPS now for 5 1/2 years (Diagnosed for close to 4 years.) I thought I would take the time to share my story with you but I will warn you first it is long. I will try to make it as brief as possible but I don't want to leave out any important details. A long time ago I was in a wreck and strained the muscles in my neck, right shoulder and arm. I did not realize it at the time but I also had damage to the C4/C5 vertebrae. Over the years it would flare up from time to time--maybe once or twice a month and I would be in tremendous pain for anywhere from a few hours to a day or two. Occasionally it would be worse and on a few occasions I sought medical attention for it but the only thing they found on MRI was a slight narrowing at the C4/C5 disc space--but nothing severe enough to cause the type of pain I described. For the most part it was occasionally bothersome and nothing to get too upset about. In Spring of 2005 the pain started becoming more severe and more often and again I asked my PCP about it. (A new one as we had moved.) After x-rays, a round of PT, and no relief I was sent to pain mgt. In Jan. 2006 I was sent for another MRI and by this time it showed a slightly herniated disc, nothing serious to require surgery. I went through all the non-surgical treatments there are for herniated discs--PT, a series of three epidural injections, ect. By July the pain had worsened considerably and was no longer intermitent but rather constant and unbearable and burning. I was referred to an orthopedist to check the shoulder joint. (It was fine.) And then to a neurosurgeon who decided there was not enough damage according to the MRI to do surgery. I was then referred to a neurologist for an EMG which showed chronic denervation/renervation of the C5 nerve root. I continued to see the neurologist and by this time I was having symptoms of changing colors and temp. in my right arm. At times my right hand and arm would be ice cold. In 10/2006 she diagnosed me with RSD. At the same time my pain mgt. doc order a new MRI of my C-spine and got a second opinion from a neurosurgeon who reccommended surgery for the herniated disc. Not wanting to believe I had RSD (Did I mention I am a RN and we make horrible patients...) I stupidly opted for the surgery. In 11/2006 I had a cervical discectomy of C4/C5 with fusion and allograft bone graft from right hip. Needless to say the surgery did not help with the pain. The only symptom it helped was dizziness I had when I turned my head too fast to the side. I returned to work a few weeks after surgery. (I was not providing direct patient care-I was developing a new program for breast cancer patients.) Still in severe pain and unable to take pain medication due to my work's no narcotic policy, I was suffering beyond belief. Finally in April I could no longer take the pain and filed for FMLA and went on short-term disability. We tried Stellate Ganglion blocks. Unfortunately they did not work. In August 2007 I had a SCS implanted. It was a God-send. I was able to wean off all the medication I was on and returned to work as the charge nurse on an oncology unit of the hospital. Unfortunately good things don't always last. In Jan. 2008 the SCS started to mimic my pain rather than block it. At the same time my RS began to spread to my left arm and my chest wall and began affecting my heart rate. One day at work my heart rate increased to 143 (resting). MY cardiologist, PCP, neurologist, rheumatologist, and pain mgt. doc were all encouraging me to go on disability. I loved my job and wanted to hold out as long as possible. After a 12 hour shift on Feb. 29, 2008 I was taken to the ER by my husband in severe pain to the point I was passing out. My chest was red and swollen, my right arm too was swollen and cold. I was admitted for 3 days for pain control and initially put on a morphine pump then converted to a duragesic patch plus breakthrough pain medication. I applied for a medical leave and was denied and fired. I filed for disability and by the grace of God was approved the first time and within two months. Since that time I have tried every treatment available that I know of that my insurance will approve of. We tried stellate ganglion on the left side. They did not work either. I have tried high dose steroid treatments, IV Ketamine infusions, nerve blocks, A referral to Texas Tech Pain Institute (which was declined because they said there was nothing they could do that had not already been tried). Meanwhile the RSD has also spread to my stomach, back and neck--so basically it affects everything from my neck to my waist, front and back, and both arms, and internally my heart rate and stomach. So right now I am on a combination of medication that somewhat works and waiting for a new treatment to come along. During all of this I also was diagnosed with Sjogren's Synndrome. It causes severe dry eyes and mouth and joint pain. My hands, knees and hips are the worst affected. I also tore the labrum in my right shoulder and had to have surgery on it in 12/2008. It froze and I had to have surgery to break up the scar tissue in 4/2009. My left shoulder is frozen from overuse and I have yet to have surgery on it. I also need surgery to remove my SCS. But I am afraid to do so. Well that's my long drawn out RSD story....a few other things about me:

I am married to Kevin, my high school sweetheart. We have been together 26 years, married 22. We have two boys. Josh is 21 and Michael is 19. They are both in college right now at the local state university and living at home. Kevin has his master's degree in genetics from Texas A & M but left the corporate world many years ago to go into full-time ministry. He is the Minister of Music at our church. I mentioned earlier I used to be a RN and would love to go back to it come day. In addition to school Josh is a youth intern at another church here in town and sings back-up and plays drums for a Christian band called Epic Rescue. He also is the op ed for the university newspaper. Michael works part-time for a home-building company. He also mows lawn for added income. He suffers from chronic migraine headaches so he understands what it is like to be in pain . We have three dogs. Beau is a black lab. Lexie is a chocolate lab and Beau's momma. They are outside dogs. Then there is Taz. He is a chocolate/brindle chihuahua. He is the newest addition to the family and is 14 weeks old. He is my little buddy. I got him for Mother's Day and he makes me happy. Well, that's our family. I look forward to meeting everyone.

Cricket

Thank you for sharing your story (and your precious family ) with us!
You've found a wonderful place for support! There are many caring people here who can embrace this battle you are faced with.

I got real excited as I read your testimony - about the SCS ...... then it didn't continue working. I'm sure that must have been a very big disappointment. There are some here who also have the SCS, some still get use out of theirs, and others, like yourself, don't use it and haven't had it taken out.
There are also some RSDers who have had spread internally.

Reading your post, it appears you've literally tried everything!
Please know that you are not alone......there are many hurting people here, the support is truly unbelievable.

We continue to strive for hope and strength.
Thank you for coming aboard, Cricket

Truly Caring
Rae

Hi Cricket,
It is so nice to meet you and welcome to our little club for RSDers. It's not the best type of club but this is the best place to get information and support as all of us are basically in the same boat...struggling to get through life with a bit of humor and on a wing and a prayer!

We have lots in common...I've had RSD since Feb 2005 which spread from a foot to fullbody within four months (and internally too), have tried everything under the son, have a 21 year old son, have worked with geneticists too since my son was technically not supposed to be here and is my miracle child (oh, and he plays the drums too), I love to write also, I have a cat named Tigger (AKA: BooBoo) who is 8 years old and a Chihuahua/Pomeranian mix (but 90%+ Chihuahua) named Buddy who is two years old. My
three boys (Joe, BooBoo, and Buddy) are the joys of my life that keep me going. I pray alot and am now having a Christian faith healer from my church who is gradually healing my body along with God (Amen for that) and I try to laugh out loud at least once a day. It helps to keep the pain down and helps me to forget my problems. I am glad to meet you and welcome to our little club. This is a great place for support and love.
Take care,
kathy d