First of all, I'd like to thank all of you for this group- Even though I have just joined today, you've been my cyber "home away from home" nearly 24/7 since hearing the term "RSD" grace the lips of my podiatric surgeon a week and a half ago.

I first heard the term reflex sympathetic dystrophy mentioned at my six week post-op visit after a bunionectomy w/osteotomy on my left foot. At that appt, my foot was still incredibly painful, and apparently the pain I was still in was much more than it should have been at that point. It was also discolored, and "splotchy" (for lack of a better word), swollen, and freezing cold to the touch. My doctor calmly said that these things concerned him, and that reflex sympathetic dystrophy could be something to be considered, and that I'd be scheduled for an MRI (although the xrays looked good, just to confirm the bones were indeed healing well), and for a consult with a neurologist colleague that he's consulted with in the past.

Of course, I asked him what this RSD business was all about, and he very briefly gave me the gist of it- but tried to keep it low key (I imagine to keep me from panicking... which is precisely what I did when I got home and google'd it, but that's my own fault). I started losing it at this point...what I was reading about RSD was devastating to me, and I kept thinking that I was overreacting, "there's no way this can happen to me..!" I prayed that the MRI would come back showing something wrong- hoped to God that the pins would show up to be too long, but they weren't. (My mind's dialog: one step closer to RSD confirmed dx...)

Then I saw the neurologist, by this point (just a few days later) my leg was starting to turn blueish too.

*Note: the discoloration really only happens when my leg has to be "down" for more than a minute or so...such as sitting in a chair, or ESPECIALLY when taking a shower, or when sitting on a doc's table, w/legs dangling- makes the leg look like it's about to be amputated due to hypothermia! but once I'm back in bed, or somewhere comfortable that I can prop up my leg, the color comes back within minutes- pain stays, unfortunately.*

Anyway, back to topic: at the neurologist, he notices my leg discoloration for the first time (was limited to foot prior to this). He also agrees that it is likely RSD / CRPS I (they seemed to use the terms interchangeably). He started me on Topamax, (both for the RSD and also to help my long history of migraines). He also ordered an EMG/NCV study to rule out any other possible nerve damage. I also prayed for that to come back with something wrong- but again, it was normal (or at least it was as expected for RSD). Seemed to be an awful, painful test for nothing (but that's for another thread).

So that brings us to today. I saw my neurologist again today- I say "my" now, because the RSD is now confirmed, and I will be seeing him for that, and he will also be taking over my migraine treatment as well (as there is some evidence that there are links between RSD and migraine, at least as far as how they function, it's best to "attack" them together).

As a means to keep the migraines at bay, while we battle the RSD, he administered a round of trigger point injection blocks in my neck (this was no fun, but if it works, it will have definitely been worth it!) He also prescribed Neurontin- to take at night to help w/pain and sleeping, (as even the vicodin doesn't cut it at night), in additon to the Topamax that he started me on last week. From what I've read, Neurontin and Topamax seem to be fairly common in the RSD world, so I'm hoping the side effects that I've heard/read about them get better...they can't be that bad if so many people take them, right??

Anyway, if you've gotten to the end, I'm sorry for rambling- and thank you for listening!

I have been so scared since hearing about the possibility of RSD...and since the dx, I've just sort of been numb. I don't know what to think about much of anything anymore. And even my closest friends (and family!), as much as they want to "be there" for me, they just don't get it, can't understand it at all... the few I've told- their mind's started to wander, and I'm pretty sure they think I'm nuts and/or being over dramatic. I'd think I was nuts too, if it weren't for all your posts...so again, thank you to all who've written before me...it has made this very dark, scary time for me a little bit brighter.

(and as you know by now, I'm brand new to this- so any suggestions or tips, please reply, or feel free to email me (it should be on my profile) thanks so much!!)