Hi RN-I'm so very sorry yhou have had spread. Can you get a 2nd opinion regarding going further with the perm. SCS? I have full body RSD-wasn't diagnosed for 4 years.
A Mom of 4, caring nurse-I so hope you can get into remission. Have you done any research into HBOT. That's my next move after 15 years of this nightmare. My Dr. just built two clinics with HBOT in each one.
Please know I'm thinking of you and hoping for the best possible outcome. Your friend, loretta with soft hugs

Momof4,
I am new this forum but not to RSD. I too was diagnosed five years ago but never treated. Mine too spread, and it was too late for most therapies. I have had severe ortho damage to both lower extremities, and multiple surgeries I too felt wiery and like giving up. Last September, I found a great ortho surgeon who is also very knowledgeable with RSD/Causalgia. I underwent an extensive surgery on my right foot, which severely aggravated the condition for several months. However, 13 months later and some medication adjustments I am starting to get days that are acceptable to live with. Unfortunately, it has spread to my other foot, I am undergoing injections, one tomorrow actually, that are helpful and I am deeply considering a fusion in the near future. Different things seem to work for people, continue to keep seeking you will find something that gives you some relief and hope. I totally understand your fear but do not give up hope, keep believing that there is some relief that will help you. Who would have ever thought that an ortho surgeon would have some answers and knowledge to help me. I am nowhere near pain free but I am better now than I was five years ago. God Bless, and please keep believing!

Jeanie a/k/a Wilbyfree (someday)

Momof4
Do your part and God will do his,,This disease can destroy a persons will,,Keep trying and keep moving forward,,In one way,I see it,,from what ive heard,,if you had took that scs,,it probually wouldve spread irreversibly out of control If you are in {sip},,,So hopefully your spread that you have anyway may only be temp,,,,,May the Lord be glorified,,,No doubt he touched your heart not to continue with the scs,,,,,,,I pray That you have a pain free nite,and hear good news soon,,,,,bobber