Quote:
Originally Posted by Vrae
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!  |
Vrea,
Hi it's nice to meet you.
None of us here are doctors but it sounds like it is spreading.
What is your history with a PM Doctor or Neurologist? Have you had any blocks in the past to help the RSD and the spread? That is the normal course of action when RSD is first diagnosed. I was diagnosed in 2004 also and have done many blocks, ketamine infusions(3-5 day inpatient) and medication.
As much as a hate to admit it the ketamine is what really got it under control. Ketamine and I have a real love hate relationship. I suffered greatly from some of the same symptoms you speak of the sleeping, sweating, pain, weird digestive issues, which I never had in my life, feeling of water running down my arm, what a werid feeling, etc. I have said the exact same statement "it feels like it's attacking me". But after 3 inpatient ketamine treatments I have been under control since 2009. I take very few pills at this point, back to work since Jan 2009, only PT, I go to the gym which has been a life safer. Honestly it has been by far the best form of medicine I swear. I don't know what it is about excercise or just moving on a regular basis but it does help and not just help but you feel just so much better. It was very hard to get started and try and push through but my doctor really pushed me to do it and I have been a 3-4 time a week gym person for about 2 years. There is a pediatric RSD doctor, Dr. Sherry out of PA, who believes that heavy PT, and from what I here it's quite intense, can reverse the central nervous system and in turn reverse the progression of RSD. There is also a group of doctors in Chicago doing a study using adults. It works better with children because there body and mind are easier to change.
I do still get flares but very far and few between.
Hope this helped.
Gabbycakes