No - I don't always have swelling. It's weird. I have never had swelling in my original injury site - my shoulder (at least not that I could see). And my upper arm, which hurts a lot, is skinnier than the other one. That's from atrophy because I haven't used that arm and shoulder as much as the other side since I got hurt over 3 years ago. My hands get really cold but they never swell.

My right leg, where the RSD spread, IS swollen, it has gross varicose veins that are fat and ugly that I never had like that before. And it hurts, but not as much as it used to because I've had 1 block and 4 lidocaine infusions. I'm getting my 5th lidocaine this Monday. They have helped my legs and feet. My feet swell, and my right ankle, and it was often worse when I wore my sneakers a lot. It might have been from the constriction. I'm not sure, though. I know my feet even feel swollen in my Crocs sometimes. It's worse in bad weather, or when I've been walking a lot, or when it gets really cold. Or sometimes I can't tell why...I hear you on the burn and the ache. Stinks big time. Please try to keep moving. Always.

But I love my Crocs, too. I really like the new ones that just came out - the fur is SOOO soft. One of my sisters has a pair. I'm hoping that Santa brings me some!!

XOXOX Sandy

Sorry about your pain and spreading. I feel that I have been pretty lucky so far, but am still careful and leary of flare-ups occuring. Anyone ever have sporadic ankle pain? I know that occasionally when I get up in the am or just from sitting, I feel like I twisted my ankle....didn't.......and can't walk on it with full weight for awhile. Just cuirous. Thnks and take care all.

KETAMINE!!!!!!!! was the answer to my prayers. infusions... it was spreading from just a hand to my arms back ,etc... any quetions... feel free to ask.

My pleasure.. and rest assured you are not alone in your fight...One day..one hour at a time.... My favorite daily thought is... Life is not waiting for the storm to pass.... Life is about learning to dance in the rain....

Soft hugs..KS

Thanks for this- I love your favorite daily thought! momof4

Hi Hannah, I am looking into ketamine. Are you CRPS1 or 2? I had an initial nerve injury and I haven't read much about CRPS2 and infusions. Did you need 5 or 10 day? Where you able to get off meds? How often do you need boosters? Thanks so much for your help. momof4

the all internal.....ANS..meditron system with two internal leads..each lead has one tab with 5 contacts ... I am wired for both legs... I have the newer model which is the smaller unit, I had to wait until it was manufactured due to my stature my Dr. insisted on this size..less weight for me to carry around.... The area where the box lives, my left hip is always tender and my spine , to me feel like I have wires which sometimes it can be bothersome.. but manageable..Plz. let me know if I can help you answer more questions....KS

I'm sorry you have spread- it seems most of us do. I have full body spread plus internal pelvic area. Please do lots of research before SCS- some have good results, but some have spread to internal pelvic area and spine. Believe me, you don't want that. In 15 years, I'm mobile, have only one limb partially paralyzed. swimming 86 degrees is really beneficial, stretching massage therapy, physical therapy. Sleep and right meds mean so much to have some functioning in life. My Dr. put me on a 200 person trial-I wasn't sleeping, now sleeping 10 hours and pain has gone done. The restorative sleep is so important. It was seroquel XR 300 mg- study for fibromyalgia, which I also have, but huge restorative sleep benefits.
Do lots of reading and research. Take care, loretta

KS, Thanks for sharing. I had good results with trial medtronics and it is thin but that is my biggest fear is having pain or spread to surg. area. My Dr. agreed to put it above the back of my bra instead of down to my butt(if i go for permanent). momof4