Have i missed my window of opportunity? I started with RSD in entire arm-had scs trial but even though it helped i was afraid of making the wrong decision. I would ask what if it caused it to spread or that i couldn't run or that I couldnt take any more pain than i already was having. Fear. Fear of making the wrong choice- i am waiting on a list for possible ketamine. Now RSD has spread to my feet,lower leg and other hand. SCS only works on sympathetic mediated pain(smp) and not on symp. indep.pain(sip). My Dr. still says it will help lessen the pain but not to the extent that it would have before spreading. I have read dont do surgery once it is sip because it can cause spread-but it already has spread. Now my meds have been changed again and i wait. momof4

momof4...

Sister..it is never too late!!!!!! One of our biggest battles with RSD is to keep moving forward with options..keep exploring.. it's so normal to wonder if spread will occur and even now that it has..don't weaken!! RSD is such a gamble..spread with surgery..possibly but it may anyway!!! By the time we get to Ketamine, I read the list is long... they may have other interventions to try..Guess want I am saying is..keep moving forward staying open to other interventions..most of all don't be afraid to try em as one just may help you with your pain levels and spreading...everyone reacts differently..one thing for sure..we are all sitting ducks!!! Hope I helped you and know that I care..I am so sorry for your delimea....

Soft hugs..KS

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

KS, Thanks so much for this. I really needed to hear this. To know I do have to take chances and stop worrying. Your right I didnt get the scs and it spread anyway. To hear everyone is different and things do work for some and not for others I have to just try what i can. Thanks for your kind inspiring words. momof4

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

Momof4...
You are most welcome and I sure hope I helped you..There are no easy answers..if I had even a glimmer of one..I would share it with you and the world of RSD patients..its a crazy world and this is a crazy illness... best we can do is "baby sit" it and be willing to jump at ny giving time ..be open to all options and not place all of our eggs in one basket... hang in there..you are not alone..one day this will all make sense..we just can't see it yet..even is I can not benefit.. my hope is one day I will enable someone else to...

Hugz for a great day, Momf4 and everyone else here!!!

KS (it's free and it will be returned to you... great medicine!).

Hi RN Momof4, The Fear you talk about is 'part of RSD' A part of our brain, called the Limbic System, controls depression, causes anxiety, among other things. Before RSD Anxiety wasn't a part of my life, but it is now. My RSD Dr. is a neuro, pharmacologist, and psychiatrist. I take lorazepam, an antianxiety med. It truly keeps my emotions more at a level pace. Being on the correct meds is critical to feel balanced, lowered pain days, contol blood pressure etc. Because RSD is an autonomic condition, our circulation, blood pressure are affected.Because of all these parts to keep calm and balanced, having a Dr. up on all of these is very important. I hope you the best of health, your friend, loretta with soft hugs

Thanks to everyone who has responded. I am so thankful to be part of this team of such caring individuals. My Dr. has changed my medications once again and this one is really seems to be helping-i'm just a little out of it. But, that's ok for now. Like everyone says i am going to take one day at a time. Thanks & hugs to all of you. momof4