Hi Kim,

Welcome. I haven't told my story in a while, or maybe not ever. I can't remember. Sorry if it's too long or too boring... to me it's become very, very overwhelming and sad.

In a few days it will be 3 years since I hurt myself at work carrying a workbag that was too heavy because my co-worker was pregnant and I didn't want her to carry anything. I tore my rotator cuff and had 2 surgeries to fix it, and somewhere along the line my sympathetic nervous burped and I developed RSD. I'm 48 years old, a CPA and a CFE, and have been on a disability LOA since June of this year, which in retrospect was one of the worst things I have ever done - I have been severely depressed since taking the leave, work was very good for me I just didn't realize it at the time. I should have pressed my employer for PT hours, even though our office does not really allow it. I may have been able to work something out instead of being home ALL THE TIME, which I hate.

I was officially diagnosed in June of 2008 - first in an emergency room where I went when I thought my shoulder was infected because it felt like it was on fire and going to burst. I asked them to do a blood test to get my sed rate and my white blood cell count. Both were normal. Two days later my RI orthopedic doc diagnosed RSD and sent me to a pain management doc in RI. The RSD started in my shoulder and spread to my cervical spine and occipital area of my head after a series of trigger point injections in the summer of 2008 administered by the RI pain management doc. I learned some of the most important lessons with RSD the hard way - an immediate series of sympathetic blocks right after diagnosis can help put you in remission (the RI doc wasted 6 months of my precious time), and RSD areas and those adjacent to the RSD areas should NEVER be injected. Since that time I have not been able to lay down on my head - in bed, in a chair, in a car, not ever. It hurts too much.

I was fortunate to find an excellent pain management doc in Boston, Mass in Dec 2008 (from a co-workerr whose son has RSD). Since December 24, 2008 I've have 8 stellate ganglion blocks, 4 lidocaine infusions (the last one just this morning), and one lumbar block. I've had periodic problems with what I've suspected has been spread to other areas, especially my right leg which is extremely swollen and full of fat ugly blocked varicose veins. The pain in that leg has been greatly reduced since the second lidocaine infusion and the lumbar block. (In the summer I wore long pants to keep that leg hidden - it is just nasty looking!). My feet were just awful last winter when it was cold and I walked like crazy to keep them mobile. I only wear Crocs because when my feet are constricted they swell. I have other symptoms of RSD, too - my hands are usually cold, so I wear gloves almost all the time, (especially when I sleep), loud noises hurt my ears, bumpy car rides are tortuous, etc.

WC has been vicious to deal with, routinely denying everything that crosses their desk - meds, PT, my docs, my psychotherapist, etc. I am beginning to think that the attornies are really the ones who have won in my case - they go to court over and over and over, both mine and the insurance company's. By now they know each other well. They are both named John. I could not do this without an attorney, and even though I have one of the very best in the state it is still a struggle.

I have been accepted by Dr. Ronny Hertz at St. Luke's for ketamine infusions in NYC but no date has been set - he estimated that he would be available sometime in Jan 2010. I have an appt to see Dr. Philip Getson in Marlton, NJ on Dec 3rd for a work up, he also has ketamine and does thermography so I can get a picture of all the RSD spots in my body. That will be cool. I have heard that he is an awesome practictioner so I am looking forward to meeting him very much. He is also located near my mom and dad and one of my brothers, so that getting treatment with him will be easier for me than NYC. My husband and I will have somewhere to stay when we travel. Unfortunately, Marlton NJ is 268 miles from where I live in RI.

I am now working with my psychotherapist on "mindfulness" training. I sincerely want to get better and put this all behind me, and get back to work in some capacity. My office is holding my job for me for one year from the date that I left, but I hope to return sooner than that. I can't work with the meds I am currently on, and that is why I left. My reputation as a professional is really important to me and I was starting to forget things and make mistakes, and I didn't want to be driving late in the day when I was tired and taking meds. I am on Fentanyl, Percocet and Methadone - as well as Topamax, Cymbalta and Clonidine (sp?), and use Skelaxin and Ambien CR to sleep and Voltaren - a topical gel and 2 types of patches - Lidoderm and Flector. I have developed a tolerance for opiods and my doses are pretty high. I rarely drive now, except in the morning. I used to go to PT twice a week, but stopped that about a month or so ago. I miss my PT guy who always demonstrated a sincere interest in my case but it is better that I am not driving there anymore. My head definitely felt better when he took care of it.

I do not know if the WC court will authorize ketamine and the travel expenses associated with it. WC has already denied it, no surprise there, so the matter will now go to the courts. I will likely use my accounting skills to prove that the cost of getting me better with ketamine treatments will be less than keeping me sedated on about $3,000 or more of meds and $2,500 treatments in Boston every month while being disabled and unhappy for the rest of my life. I am hoping that Dr. S's recent double blind study holds some weight, I have provided it to my attorney.

Interestingly enough, WC sent me for a QME or whatever they are called just recently, and I had to go back to the same ortho doc that caused my RSD. I told him that I wanted to get better and go back to work, and for that I needed ketamine. He deemed me NOT to be at MMI.

My caretaker and best friend is my husband of 25 years. I married him a year and a half after I graduated from college, when I was only 24 years old, and he is the very best thing that ever happened to me in my whole life. We have 2 kids, a freshman in college and a sophomore in high school.

RSD is by far the hardest thing that we have had to deal with so far in our marriage. There have been so many difficult times - The initial injury, the surgeries, the RI docs who messed me up, the RSD spread when I was in excrutiating pain and vomiting and we had NO CLUE what was wrong with my head. All of the traveling to Boston and the scary procedures (I HATED the stellate ganglion blocks, I am a WUSS!). And it's only been 3 years.

There are some great people on this board and some very good information. Get yourself an excellent doctor that cares about YOU - go to a large univeristy or city hospital pain center where you can get evaluated by the best of the best in your area. ASAP. And read as much as you can, the RSDSA has some excellent info on its site.

Take care, XOXOX Sandy