I was dx with rsd/crps type 1 about two weeks ago, caused by bunionectomy on left foot two months ago. Luckily (under the circumstances), I have a great podiatric surgeon who spotted the signs of rsd quickly and sent me to the neurology team as soon as he saw problems- and from what I have read, time is essential in "our world".
Anyway, I was started on Topamax (25mg) and Neurontin (300mg), once/day and double each week (for the first four weeks). I'm also taking Vicodin for the pain.
My concern is that the pain and other symptoms have gotten worse, even as the meds have increased. The burning-type pain has improved, but the shooting pain is still terrible. It used to be pretty tolerable in the AM, when I woke up I'd actually only need 1/2 a pain pill and I'd be ok till mid afternoon...but within about a week it's gotten worse: now, from the time I wake up I'm already in pretty bad pain. and nighttime, forget about it... I take two half the time (which I never did before) and that still doesn't cut it, and I'm waking up at night when it wears off. I feel like it should be getting better, I've read such good things about these other meds I'm on, but it seems like as they help with some of the pain, the rest becomes more intense.
Also, it is spreading up my leg. It feels like there is a tourniquet around my thigh where my leg meets my hip. idk if this makes sense to anyone?? There is throbbing pain now that accompanies the shooting pain. It feels like a pinball machine hooked up to electric wires is hiding out in there.
I'm also wondering if anyone else has experienced some of these things- as I'm new to this, I have no one except you all to relate to, so I have a lot...thanks for baring with me
*The color changes (typical of RSD/CRPS) that I have come and go (which is normal, I know), but what happens with me, is that if I'm sitting or standing (my foot/leg vertical) it turns black/blue/purple and splotchy...but once I lay back down, it typically turns back to normal color w/in a few minutes. It's quite weird.
*Also, on the topic of standing, it's gotten so bad, that I dread taking showers, b/c just having my leg down, even without weight-bearing is so painful and the physical signs it displays afterwards are so terrifying- looks like frostbite, black top and bottom. Does anyone else notice this? B/c in terms of color, it's ok when I keep my leg elevated. When it's down, it feels like it's going to burst. Again, that tourniquet feeling gets intensified ten-fold. I wonder if it's got to do with the circulation aspect of CRPS...
*I'm also restricted from physical therapy at this point- my drs say that they need to get the meds figured out, and my pain under control first, or the disease can get worse or spread. But i don't quite understand this...b/c my foot muscles are getting stiff, and getting painful in and of themselves, b/c they aren't being used...it's starting to really drive me nuts! From a cheerleader/gymnast (a few years back) and runner, to a couch potato...I feel like I'm going to lose my mind, and my foot
*Most importantly, can anyone share how their RSD/CRPS progressed, especially in the early stages? I feel like this is getting bad, fast, and that it shouldn't be. If you wound't mind sharing your experiences, what meds you take (had taken), and what helps you to cope.. Tools to stay comfortable when meds aren't working, etc. Also, ways to explain this "beast" to friends/family. It's so hard to be dx with something as rough as this, but not be able to have any concrete way to explain it. Sometimes I think it'd be easier to have be dx with cancer...you can understand that, treat that, explain that... I hope that doesn't sound too awful.
Thanks for your help...you all mean more than you know!