Hi KD, and welcome to the family!
Like you and Laura, I also have CRPS. Mine also started as a result of a work related injury. The believe I ended up with tendonitis as a result of over working my arm moving heavy items, but after a reasonable ammount of time the pain wouldn't go away. Physical therapy only made it worse infact. So they sent me to a hand specialist, wondering if it was carpal tunnel as my right hand and wrist were in severe pain to the point where I could barely grip anything with my hand; I had to eat left handed given I'm a righty. My MRI's came back fine though, and not knowing what to do with me he sent me back to work with a wrist brace and vicoden and said "let's see what happens". It didn't help that I had a boss who hated my guts and viewed me as competition; so he proceeded to run me back into the ground and threatening me with losing my job if I didn't do my assigned tasks. (Which I was generally having to do with my brace on AND on vicoden.) I had brought my issues with him before the owners, but they weren't very sympathetic, and eventually the manager got his way and worked me so hard that I had to call in one day; the next day I was terminated.
So it was off to another Workman's Comp doc. They sent me to an orthopedist, who wondered why I was wasting his time as my x-rays were fine. Then they sent me off to a Workman's Comp pain doctor -- I would love to find a way to put this man out of practise! He never out right said it to my face, but insinuated that I was just abusing or selling my vicoden, and that I was faking it. My hand would be discolored and swollen and he'd either say "I don't see anything" or he'd say "well you obviously were doing something to your hand before I walked in to make it that way". In the end after a full arm MRI he told me "I can't find anything wrong with you, there for your fine." and my case was closed.
But the pain wouldn't go away. Infact it was spreading to include my elbow now, as well as my wrist and hand.
More specialists and still no answers. All I wanted was for someone to tell me what was wrong, and fix me! I just wanted to return to my life, pain free. Two years after the accident I was sent to a fantastic Pain Management Specialist, and he had an idea what it was but wanted to do a Stallate Ganglion Nerve Block. It didn't do anything for me. That was all he needed to know; I was pronounced with CRPS stage 2 - meaning Non-Repsonsive. He wanted to try another nerve block, to another cluster, but the same results as the first one happened; nothing. I was told that pretty much the only way to treat CRPS when it gets to this point is to manage the pain as best as possible with drugs and an SCS unit.
It's now been 3 and a half years since my accident that turned my world upside down and changed my life forever. When I was told I had CRPS I was told the life I knew was gone. It wasn't a lie. I have had to give up so many things, and re-learn how to live my life, how to stop being proud and stubborn and accept the fact that I WILL and DO need help with day to day things that most people take for granted.
I've been on Vicoden, Loritab, and now a days I'm on Percoset. I'm in the process of trying to get my SCS implant done, having under gone a successful 10 day trial period back in February, but I hit a snag; not alot of surgeons where I live want to do them anymore due to some inherent high risks. A few procedures gone wrong and not many people want to touch the procedure with a ten foot pole anymore. But there are always risks when you look at doing surgery, especially so close to the spine, and inserting foreign objects into the body.
From what I have been told and learned about CRPS over the years it's a progressive "disease". There is currently no cure, and unless you fight against it you run some serious risks. I did alot of web hunting for as much info about it as I could. You can also look up RSD, which is what CRPS used to be refered as. You're right in your description of it; it is an evil "disease".
I have a feeling I know why your neuro-surgeon said not to do the implant; you have the same problem I do, and that because it's your arm that is affected they need to implant the leads high up along your spinal colum -- all the way up into your cervical area. When I did my test my leads were up by C2. Because the normal leads tend to migrate easily, especially in the neck area, they recommend using the paddle leads. They're a bit bigger lead, but they offer better coverage, and because the "suture" them into place, there is less chance of migration. This is where I run into my current hurdle as because of the size of the paddles I just had a cervial MRI done a few days ago; they need to make sure there is no narrowing of the space or bulging discs they're unaware of, before they can even tell me they can do my surgery. The process requires a lamenectomy (the spine/brain specialist who will be doing mine does not do a full one, though he does remove some of the lame' to make getting the leads into proper position possible, and then sutures the leads to the ligaments next to the spine) and in such a small space in a sensitive area you can imagine the risks that come with it. Paralysis is one of them. A very sobering thought. My PM doctor has gone out of his way though to find me the best qualified surgeon to do the procedure, and I made sure to speak with the surgeon about how many a year he does, his success rate, what's the worst that's ever happened to his patients... everything I needed to ask to put my nerves at ease before saying "okay, let's do this!". So long as my MRI comes back normal, I'll be good to set a surgery date.
My pain started in my hand and wrist, now it's my entire right arm and into my neck, as well as taking over the front of my clavical area. CRPS is progressive, and I've yet to hear about anyone having it's progression halted. I have heard of some going into remission, but most of those folks were all at Stage 1; if you catch CRPS early enough you can actually reverse it or at least put it into remission by having successful nerve blocks done. However alot of times CRPS isn't diagnosed until it's past this point. There was a time when I wish they'd figured out what was wrong with me in those months after my accident; maybe then I wouldn't be where I'm at now. Now just getting through the day is a challenge, and lately my pain has been so high I feel more like I'm exsisting ... to sore to want to do anything, or I end up pushing myself to far and end up crashing out from a combination of narcotics and more pain then my body can handle. I took pain management classes long ago, especially when I was in martial arts, so I try to block as much of my pain as possible, but I can only block so much, and on average my pain is about an 8 from the moment I get out of bed. Infact as of late sleeping has become a real challenge as trying to get my arm comfortable feels like Mission Impossible.
I know over here in the states they don't always recommend the ketamine treatment, as they're still doing it as a ketamine induced coma to try and "reset" the nerves, but of course the risks with that are obvious. I know Laura said she did an "awake" version, but then Australia seems to be ahead of the curve when it comes to treating CRPS. I know they used to recommend buring out the affected nerves, but I don't know of any doctor's that still practise that option; that's just to risky in my book to not have /any/ sensation... I mean we have nerves for a reason.
I have a neighbor with an SCS unit and it's really changed her life and restored alot of it back to her; but she doesn't have CRPS. I know from my own experience that the 10 days I had mine were annoying and a blessing! They implanted my wires about mid-back, and used the normal ones, so there was alot of motion on their behalf; this resulted in sudden "jolts" where the sensation was 100 times stronger then it should have been. It was explained to me as "think of dangling two pieces of string down a piece of pipe." which is why the paddle leads are far better. I was told this "jolting" would be pretty much eleminated with the permanent unit. The tape and padding across my back was a pain; it was itchy, bulky, the tape kept trying to peel, I couldn't shower... all mild annoyances that were only temporary. Obviously I won't have those issues with the permanent one. But oh I tell you, the day he pulled my temp unit off/out I was so sad. For 10 days I had a taste of what my life could be like. Now that I have the best surgeon I could hope for for the procedure I can only hope I can still have it done. Otherwise I can examine extended release pain meds, with some strong stuff for break through for when I have flare ups; which is pretty much all the time now with the weather turning. Unlike Laura I don't have the extreme sensitivity, unless I'm swollen, and in the summer heat of the high desert that's already starting to happen as we had a heat spike the last few days and it's to the point where I can't open anything that requires twisting, and I have to have my mother cut my food, as my hand won't hold the knife and cut through anything mildly resistant like a sausage.
I hope at least for now they've got you on some good pain management medication, and some of us with CRPS/RSD have tried to talk about ways we modify daily behavior to deal with things, as well as tips and tricks to help things. I know I take a daily hair/skin/nail suppliment, and while it's never been conclusively proven to help, I know for a fact I've never had any of the hair/skin issues generally associated with CRPS. I still get ocassional discoloration ... usually red, but it's heat related, and that's always hand in hand with the swelling to the point where all the lines in my fingers are missing I get so swollen. I use alot of biofreeze as well to help combat the heat and the swelling, and even some of he pain; Icy Hot makes a wirst/forearm sleeve that works okay, especially once the medicine wears off and I saturate it with biofreeze.
Like Laura said, if you have any questions don't hesitate to ask. My email link works, so if you ever need to talk -- I know emotional stress, and just stress in general, only aggrivates our condition.
I also know for a disease that's so "rare" there seem to be alot of us, but at least we've all banded together and we have places like here, where we can talk and comfort one another, and fight this together; Sisters in Pain.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant