Originally Posted by birchlake

First post here. What a great resource! I have spent hours reading many of your stories. What an unusual, misunderstood, misdiagnosed and devastating disorder this is.

My situation is not as difficult as most of yours, but it has become a "lifechanger" for me, none the less.

I had two surgeries on my big toe. Healing nicely, then on September 11, 2008 I bumped that surgically repaired toe into a piece of furniture which started the process. Very light bump and to be honest, I didn't think much of it.....at first, until symptoms increased.

Podiatrist put me in a camwalker, which made things worse. One of those prior surgeries was a fusion of the front toe joint and there was still a screw in there, so he thought aggravation from the screw was a possible cause, so removed the screw but no change. X-rays and CT scan negative. Podiatrist eventually suspected CRPS as there wasn't much left it could be (diagnosis of exclusion). Met with a pain management doctor who specializes in RSD. He performed a sympathetic lumbar block. Had a successful block (warming of leg) but got no relief from it; it actually aggravated the condition for a day, then went back to baseline.

If anyone would have told me that a sore toe would create this much pain and angst, I wouldn't have believed them (until now)! A month of physical therapy got me ambulatory again. Another month of work on my own and I got much of the foot swelling down, range of motion back, and pain reduced.

Inflammation, shiny red skin, burning pain remain (had stabbing/hot cold, but that has since since gone away) Oddly, I have NO hypersensitivity! That is the one symptom that I've never seen. I believe that lack of hypersensitivity may have hindered a quicker diagnosis.

Am taking neurontin 300mg 3X a day which definitely helps, OTC naproxen sodium, warm baths, massage, foot and toe exercises, stationary biking and short walks to keep things loose, blood moving, and keep my sanity. These things are ALL helping. I can't spend much time on my feet though or I pay for it later in the day. "Use but not overuse" is my mantra. I think I learned that here!

I'm also nursing a bad knee (other leg) and will eventually need a knee replacement. Had surgery scheduled just before this all started but put a hold on it at this time because of the toe CRPS. And between the toe and the knee, that prevents me from working as a Technician. Money running out.....yikes!

A couple of the things I've been pondering which I'll toss out for comments...

1. Anybody ever heard of having CRPS in only part of a toe? And NOT having the hypersensitivity?

2. Risks of taking Neurontin (gabapentin) long term? I'm tolerating well so far

3. Risks of having this spread to the knee if/when I have it replaced?

4. Any risks involved with major dental procedures. I was told that cleanings would be okay, but we did not discuss extractions, root canals, etc. Podiatrist did say that risk of spreading from procedures is primarily when cutting of muscle, nerve, or bone....not tissue.

Thank you so much in advance for any comments!