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!!)

I have posted on the behalf of my Sis on the RSD thread. Her name is Terrie, and she has dealt with RSD now for many years. It is serious business and you should keep on top of it with your doctors, working to manage it the best you can, as for Terrie, now she is on a strong cocktail of morphine which is intended to help her keep at peace the best she can, and all of this started years ago with a knee surgery.

Praying for you, and hoping the best,
Mark56

i've battled fibromyalgia since i was twelve but only diagnosed a few years ago. being fed up with the weight that the lyrica had packed on i started jogging in april. a few days later i could bear weight on my leg. i pushed on. it got worse. i was working in a nursing home. i spent all day walking, lifting and squatting and the pain was unbearable. finally the dr told me i had pulled something. i got a full three days to rest. then back to work. it got worse. i'd slip off by myself and cry or vomit from pain. co workers said that i needed to suck it up. i insisted that the pain was worse so my dr sent me for an mri. a week later i'm told that i had an inch wide fracture in my shin. so i had to stop working. after a few months it just wasn't healing right. i wore a bone simulator. my leg just hurt and felt weird. btw this whole time i'm in so much pain i'm taking lyrica and tylenol. that's it. i endured a nerve conduction study with a jerk who yelled at me because i couldn't flex my quad with a needle shoved in it. nothing. physical therapy, nothing. then the dr just shrugs and says if we leave it alone long enough it'll get better. so in october i come crawling back in extreme pain with hot and cold water feelings and creeping. he suggests a nerve block. it worked for about four hours. then the pain came flooding back. he has given up on me and refered me back to my family dr. she has me set to see a nero but they pushed it back another month. now its spreading to my back in an old work injury and creeping down my arm. the same side that i'm forced to use a cane on. now the dr and the pharmacy can't work together to get my lyrica. i know ppl that whine about a simple strain and they throw pills at them. i'm in so much pain that i cry and loose my temper and can't work and they won't give me anything. i'm coming unglued. i need a place to be understood.

Dear Fairlight,

So sorry to here you are suffering. It sounds like you just might not be with the correct doctors. My suggestion is to try and get to a Pain Managment Facility, possilby with a big teaching hosptial. I see you live in TN maybe Vanderbelt in Nashville I believe they are medical teaching facility.

I hope this helps. Feel better.

Gabbycakes