Originally Posted by RSDJennetta

Hello everyone!

I haven't been on lately because of a lot of things going on in my life. I do read the threads often. I used to be the one with positive advice or comments and used to be really upbeat and positive about life. A short background - I have had RSD since 2000 and it developed after surgery. After countless doctors, I found some that believed me and was given trigger point injections, put on multiple medicines (none would give anything stronger than neurontin - possibly because I am bi-polar), and had a temporary scs that was very effective, thus, having a permanent one put in. Well, it worked for about a year. I have RSD in my back, right foot, and right arm. Everything was tolerable until this happened:

The back of my neck started swelling up and becoming very painful. I went to my regular doctor and he thought I had a cyst next to my scs leads and did not want to touch it. I went to the neurosurgery department that put the scs in and they said there was not a cyst but the leads were causing the pain (after 3 years of having the scs). I decided to have it removed even though the procedure of having it put in was horrific and I would never want to go through that again. They "reassured" me that it is not as bad as having it put in. Well, it was. I dare to say it was even worse. It has been 4 weeks and I am still in pain even though I am taking oxycodone 10mg every 4 hours with 2 extra strength tylenol. I was taking 20mg but it was making me loopy and I hate to feel that way. After 3-1/2 hours, the pain returns and I have to ride it out that last half hour (even on 20mg it did the same thing). I am depressed. I cannot drive, I have to wear a neck collar, I cannot do anything physical, and I do not want to leave the house. My friend, mom and son are helpful, but I do not like asking for help (I am getting better at it). I see the doctor in 2 weeks. I am nervous that the RSD is in my neck now because the pain has not really improved much since surgery.

Now what? I do not like not knowing what the future holds. I am not sure that the doctors will let me stay on pain medication. I do not know what they will suggest, if anything, to control the pain. I hate this! I struggle every day to try to be positive like I used to be but it becomes harder and harder.

Thanks for listening.

Jennetta