Dear Vanna and Smilin,

My most significant RSD pain was in my head. I remember when it first started I would wake up vomiting from head pain around 5 a.m. I'd take a percocet and drink some coffee so the caffeine would get the meds into my system ASAP. Then I'd get my act together and like a good girl go to work, never missing a day. In spite of the RSD, I honestly thought I might have a brain tumor in there too because the pain was so awful. That went on for at least 4 or 5 months - if I used my arms for anything too strenuous, or the wind blew on my neck, or it snowed....UGHHH!! It turns out that my RSD is from brachial plexus injury. The brachial plexus got injured at work but I beleive that my RSD is from my ortho surgeon's aggressive PT, icing, and 2 surgeries, then I had trigger point injections in my neck and head (another brilliant RI practictioner - NOT!!), yada, yada, yada...

My last day of work was June 19th. I have one year from that date before my health benefits will run out and we will have to switch to my husband's, which is far less affordable for our family. I also have one year technically before I might not be able to go back to my old job, after that my boss gets to decide whether he wants to take me back or not.

Anyway -- I left because I just couldn't do it anymore. I was getting sicker and I was tired of being a hero with the pain. Plus I ran out of sick and vacation time to use for my doctors' appts. Even though I did my PT (not with the negligent ortho's office, but with a new guy who did his best to learn what he could about RSD), I still needed to see my Boston docs, my PCP, and various others. And most importantly, my job is REALLY technical, and I started making mistakes. It was getting hard to focus and stay organized on all my meds. So I finally had to call it quits.

I know how you feel with the change from being so busy everyday and then BOOM!! - nothing. At first I used my time to research ketamine doctors and then to gather all my papers to try to get appts to see a few that are in the northeast. My biggest goal right now is to get better enough so that I can TRY go back to work. I am not interested in filing for SSDI yet because I have kids to educate. I am afraid that with the property tax burden in RI, and the low rate of pay that I receive from WC, I will have no choice but to sell my house. And I love my house and my neighborhood.

Keeping in contact with others is big. I join a group of neighbors every morning and walk at least a mile with my dog, a ritual that we've had for a few years. I walk a few more times during the day, such that the total mileage approximates 3-5 a day. It is great to be in the fresh air and I often have someone else from the neighborhood to keep me company. The exercise has been great for my body and my RSD.

I also rest a lot, and cry way too often. I didn't start crying about my RSD until I left work. And then I couldn't stop....

I am trying to engage in the mindfulness stress reduction program. WC gave me 10 sessions with a shrink and she started me on that. Read FMichael's posts on the subject.

I think that the time off has allowed me to most of all rest. I know that I could not have worked through the summer and the fall feeling the way I have felt. And I also know that I want to go back to work but I need treatment first. And I worked really hard to find the best doctors that I could get into and get treatment with as soon I took my LOA. I am motivated to get better. Hopefully this period of time off will just become a small percentage of the total of our working life.

I really hope that this message find you in decent spirits. Please feel free to PM if you have any questions. I truly believe in trying to find the very best doctors in the country to help you get better. Smilin, you can always call and see if there is a cancellation in Dr. S.'s office. They say that it happens a lot and you can often get in early. Vanna - if you are not with a really good doc that can offer you the more advance RSD treatments, I would advise you to start working on that. NEVER NEVER GIVE UP on getting better. The very, very best of luck to you!!