Remission
 

Has anyone ever gone into remission from their rsd. And if so how did you get it to do that and how long did it last. Thanks again.:)

Hi Renee! I was first diagnosed with RSD in the right side of my face. I was treated very aggressively with meds and stellate ganglion blocks. I was in remission for many years, maybe 13. I had flares during that time, but they were minor and I could control them with meds.

I came completely out of remission in 2005 and it has been pretty much hell ever since as I have it all over now :(

Do you know what caused you to come out of remission. I'm sorry that happened. My pm dr said he knew someone who went into remission from rsd in one hand and that a few year later they got an infection in the other hand and the rsd came back.

I have no idea what brought me out of remission, but I remember it was in November that year and the ice cold wind hurt my face like crazy. A dr at the time told me I had trigeminal neuralgia too.

I'm sorry to hear about that. I've never gone into remission. I keep hoping someday I will but no luck so far. You'll be in my thoughts when you have your procedure done. I hope it helps you to feel better.

Thanks Renee, I appreciate your good thoughts!

I forget...how long have you had RSD?

Two and a half long years. It just started to spread about six months ago to all my limbs and stomach. As you know, it has not been a fun journey.

Definitely not a fun journey.

I think the only reason I ever went into remission was because I was treated very early and aggressively....meaning SGB's once or twice a week for a while. Those, with the meds, helped me greatly.

Hey Nanc (and Renee lol)

Nanc, so sorry you are having such a rough time now. Must be doubly awful after having 13 years of feeling much better. I'll hope that your symptoms settle again and maybe you can get out from under this bad time ;)

I'm a bit confused about what remission really is. Last year I was much worse than I am now, but I defnitely wouldn't consider it to be in remission now, as I have pain, burning, cold, swelling etc daily still. I think it's more the positive effects of exercise and pain management that have got me here.

Nanc, when you were in remission, you said you still had the odd flare - did you feel pretty much 'normal' the rest of the time? How bad were the flares and how frequent? Hope you don't mind me grilling you!

Take care of yourselves girls, I send you each a gentle iHug across the miles, and hope you have a better day x

Bram :hug:

I've had this for 10 yrs this month. The first 8 yrs just in left knee and would flare at least once a week. 2 yrs ago it started hurting more and even though I mostly went into remission during my first pregnancy I am no where near going into remission during this one. It has spread from just my left knee to now being mid thigh down to toes, and right knee. It sucks, and I WILL NOT take the meds for fear they will hurt my baby. I would rather suffer than hurt him. I also wasnt treated for rsd for 9 yrs. I was on treatment before I got pregnant again, and I will start treatment after he is born.

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.