iHugs back to you Bram. You can "grill" me all you want ;) When I was in remission, I had minor flares but I cannot remember how often (long time ago). I know they were definitely NOT that often. Keep in mind I only had it in the right side of my face back then. The minor flares consisted of swelling, burning pain and flushing. I took baclofen and it helped me thru the flares just fine. Other days were normal days with no issue or pain in my face. I had other issues going on with my health during that time, don't really know if it had anything to do with RSD or not. I had three knee surgeries, right shoulder surgery and hysterectomy (and o-rectomy). I recovered from each of those fine with no spread. I do not know what happened to cause all hell to break loose in the past six years and cause so much spread.

IMO If there were/are any symptoms showing daily, then that would not be considered remission. If they are better, then that is just an improvement in your symptoms, be it from meds and/or treatments.

Anyway, I too hope things calm down some soon....this is really getting old!

Nanc

Hi Renee! I've shared this a few times, but I'll put it here since you're asking for info.

I had foot surgery in December of 2008, and a few weeks later, I got RSD. My wonderful podiatrist knew what it was, and sent me to a pain dr who confirmed the diagnosis. I was very lucky, though, that I only had it for a few months before I went into spontaneous remission when I tore my shoulder ligaments. But in those few months, it was full-on RSD in the foot - color changes (purples, reds, blues), shiney-ness, weird hair growth, and most of all, intense pain (one time a penny fell off a counter onto my foot and I collapsed on the floor in agony and was unable to get up for at least 10 minutes). I couldn't stand anything to touch it; I only wore capris or pants with turned-up hems. The hem brushing against my foot was agony, as were showers.

The pain dr was going to give me a shot in the spine, which I thought was nuts because I didn't realize what I was dealing with (he didn't really explain that it could spread). I waited a month or so to think about it, then he retired, then I tore my shoulder and the RSD in the foot went away. It's been gone for almost 7 years now, and God willing I will never get it again. I will also never get surgery again if I can help it (my knees are bad, but there's no way that I'll get them surgically fixed because I'm afraid RSD will come back).

Several years later, my daughter got a stress fracture in her foot (same side as me) and was healing, then took that same terrible turn that I did. She wasn't as lucky, though, and it started to spread throughout her body. She got a spinal block and the pain disappeared, and stayed completely away for a month, then came back. She got another, and it lasted 2 weeks. She got another, and it only lasted a day, so we switched to Bier blocks. The first one lasted a month, the second two weeks, the third I think two weeks also, the fourth a few days. At that point, the dr. said our options were either Ketamine or a SCS. During that decision time, my sister, who had done hundreds of hours of research on the internet, found the Calmare treatment and the doctor in New Jersey (close to you, I think) that specialized in RSD and Calmare. We decided to go for it, and after 12 treatments went into a complete remission (zero pain) plus went completely off all pain meds over the course of a few months (she had to step it down slowly). That remission lasted 3 months, then she got a "booster" of 4 treatments that lasted 2 1/2 months, then she got another booster of 4 treatments and we're currently at about 2 1/2 months (more details on the Calmare thread).

So that's our experiences with remissions - let me know if you have any questions :grouphug:

thats terrible
 

What a disappointment..I will pray for you

A great question
 

:confused:Rsd is something else.That was a great question.Its so painful to hear you better,than surprise Its back..Best of wishes to everyone..:grouphug:

RSD is just the old name for Complex Regional Pain syndrome. They are the same condition, :) just fyi. It has been through a few name changes. They changed it to CRPS because it was a more fitting description medically. Because is is not always the Sympathetic system that is affected.

I got it in '98 and went into a partial remission. By mid-'03 I was able to cope and got off all the medication. It was about a 60% remission but then I was injured and it came back worse than ever.