I was recently diagnosed with RSD. I will be starting pain management this week and have been working only part time because of the pain/medications. I am looking to find out what to expect and what should be my next step. Please let me know if I am doing the right thing I will if necessary, visit your clinic for more help. I was told I will be on pain meds most likely on possibly having to go for a spinal tap because it seems to be progressing and they want to be sure there is no infection. Because this is not a well known disorder, I dont know where to turn. I am a 37 year old female with a 7 year old son. I am doing as much research as I can to find the best care and know the best questions to ask and hopefully get the correct care. It all started when I fell in an amusement park and my bone was exposed on my shin of the left leg, the ambulance put a butterfly bandage on it and sent me on my way. By the time I saw my own Doctor she had said it should have been stiched up and as she said we need to keep an eye on it so that infection does not set in. It has not stopped hurting since. that was in 2006. in August 2007 I fell again on the same leg. It swelled up and it has been in pain since. I saw a orthopedic Dr who saw my swelling of my right ankle and foot said it looks sprained took an x ray and I had to wear an air boot for a month. Again, still in pain, now in my right akle and foot and also my left foot ankle and calf/shin along with cramps in my calf and foot. Since being diagnosed a month ago it has now went to my fore arms burning pain. I am now trying to function on pain meds that work only sometimes and am very frustrated. My neurologist is contemplating to send me for a spinal tap to rule out infection being it seems to be progressing. I know this is a dysorder that involves many different tests but what tests are necessary and unnecessary. I do not know enough about it and want to be more educated about it without scaring myself with too much research. Does anyone know of where I can get more information and what I should be asking my Doctor?
Sorry for ranting I am just anxious to get as much information needed.
Thanks
Leanne

They'll want to rule out everything before treating you for RSD.

Be sure to be aggressive in the treatment at least for a couple years since that's when people beat it. If you do get it in remission there is still an increased chance it will come back.

Good luck.

Hello Leanne, and welcome to NeuroTalk.

I'm so pleased that you found your way here, but not pleased for the reason.

Welcome again. I hope you enjoy your stay with us.

......

I'm curious, from whom did you receive your dx for RSD?

From my experience, I would tell you it is imperative you have doctors who work with RSD. It was really a pain in the *** dealing with my medical group and insurance company (I had to change my coverage) to get to where I needed to be. Being in NYC, there will be doctors there for you.

For attacking RSD, at least for me, after medications (lyrica, tramadol and lidocaine patches), brain and spine MRI's, EMG and nerve conduction tests, treatment moved on with a specifically RSD doc with upper and lower nerve blocks, which were unsuccessful, skin biopsies, and we are about to start ketamine infusion. There are many other treatment options, certainly specific to one's own situation.

Just a note on your post in regards to a spinal tap. I just went through a thorough analysis of my blood and spinal fluid in regards to immune factors with a neuorologist who does IVIg infusions. My experience was very atypical, but I was floored for two weeks with a headache, my thinking and concentration immpaired, and my spine felt like it was being ripped out. Really awful time. Talk to your neurolgist specifically about RSD in reagrds to a tap first.

Good luck, and stay agressive in forcing the issue with your insurance company and your doctors.