I had an scs installed in december for scs in back pelvis and right leg and things seemed to be going great for a while . about 6 weeks ago the rsd seemed to be getting worse in my left leg and i was having problems with my right leg. now fast forward to this week and my legs feel like that feeling like after you lean on sit on your legs and they kindof go dead well the feeling you get as the blood starts to circulate again that horrible pain is now with me 24 / 7 with a lot of pins and needles thrown in for good measure. i cannot touch my legs , even water hurts them and i cannot bear my clothes to be near them and when my daughter brushed by my legs the other day the pain went through the roof. i am on ketamine and tonight it is helping but usually especially the last week nothing takes the pain away. i am back with doctor next week after i somehow manage to do my college exams tomorrow and saturday. this has gone from ok pain to pain i cannot bear in a very short period and i am wondering do any of you have any experience with this type of pain with rsd??

thank you in advance J

Hello J,

My heart goes out to you in your suffering....We are family here and we all can understand your despair.... I have had RSD for going on 4 years now beginning with my right leg.. Swinging to my left side and now internal...It is a monster... Not our friend!!!! please take careful notes and bring them along to your Dr.'s visit....I believe what you are feeling is spread of your RSD... But allow your Dr. To clearly confirm that....Iam happy your SCS unit was providing you some relief...are you taking other meds??? I too, have 24/7 RSD pain and I want to say how sorry Iam that you have to endure such devastating pain...It is not easy... You are in my prayers...

good luck on your exams...

let us know how you are doing...

hugz, Kathy

thank you for taking the time to respond. I am going to wait for chat with consultant he did confirm the spread of the rsd on the last visit but it definately was not as painful as it has been this last month. it is now at unbearable. going to write everything down and i always bring my dad to drs with me ( even though i am 39 and married i am still daddies little girl) he always makes sure he knows what i want to talk to dr about in case my brain goes blank!


I also take ketamine 5ml about four times a day and I take tradol but nothing really hits the pain and the ketamine seems to wear off quickly. I hate taking meds as i have two little ladies that need there mammy but slowly loosing that battle and have had to take the pain relief or i would go crazy!

I will update after consultant appointment. and thank you again

xx j