I must give a bit of history first to get to my question. Please bear with me.

I woke up from a discectomy (ruptured disc L5 S1) surgery with RSD / CRPS in December 2004. I woke screaming with pain my foot/toes/ankle/calf. The doc said he nicked my dura and over stretched the nerve root. “As soon as the nerve settles down this will go away”. I'm still waiting.

Neurontin, Soma, and Percocet eventually (many months later) did make it where I could tolerate water from the shower hitting my foot , my ankle not so shattered feeling, etc. (God I miss pretty shoes) Nearly a year later I am told “we think you have RSD”.

Anyway, here’s the point. Over the last year the RSD is getting much worse and spreading … significantly, rapidly. I have all that goes with it, burning, charlie horsing, lightning jolts, sweating, cold foot, spams, tremors, bone aches…blah blah blah. For many months in this timeframe it was toying with the idea of moving to my other foot (the good one), and in recent months it certainly has. It is becoming more profound in that foot/leg. Even more recently and to my horror, it is starting to move into my hands and arms and in probably the last month or so it is showing itself in my tongue, I’ve had it in random spots ALL OVER my body… including on my nose, my head, the back of my throat feels strange like perhaps it’s there too. I even have this awesome new twitch in my right cheekbone tissue under my eye. RSD on a rampage <sigh>. I swear it’s ALWAYS more profound at night, and brings new meaning to PMS.

I am worried that I am either headed for or already have full body RSD. Is this how this typically goes in terms of spreading? I feel like my body is just attacking me. Any insight you can offer would be greatly appreciated.

By the way, I am also a film maker / Exec. Producer of my own company. Come hell or high water, I will eventually produce a compelling piece with the hope of getting RSD the attention it deserves.

God bless the RSD worriers!