Hi Numb,

Nice to meet you, sorry we have this in common...

Has your RSD spread?
Unfortunately, yes. It started in my left arm while donating blood October 2006. It seemed to slowly get better over time then re-erupted several months later. It spread within a year to affect the entire left arm, shoulder, neck, mouth, both hands, left leg and foot. I've been to every specialist there is, everything has been ruled out. 2 Specialists agree I have Complex Regional Pain Syndrome. They are a Rheaumatologist and an Orthopedic Surgeon

Have you or someone that you know obtain a full remission from the venipuncture RSD?
Unfortunately, I personally know no one who has.

Have your RSD gotten worse overtime or remain about the same?
I fear the worst...but I have had good days in between, sometimes several, so I look forward to those days and I savor them. It helps to have things to take your mind off it. I have developed my own pain coping skills throughout this ordeal, I've had to...but it gets more and more difficult as time goes on, I must admit. There is a certain pain level I have come accustomed to, sad to say...but I can tell it's there, but focus and block it out sometimes. There's a certain level it passes that is beyond ignoring that brings me to the point of desperation where my pillow gets tear stained at night..

What treatments have your tried and any success from the treatment?
I had tried Physical as well as Orthopedic therapy for several months. It did not seem beneficial much at the time, nor would it be now for me to go when I still keep my muscles just as active at home in the shower, it's the most comfortable way to move them, with the moist heat...less strain but still keeping them going. I'm at the computer a lot, so I'm moving my muscles that way as well. (Have to have a space heater on me, even in the summer)
I had an Epidural Cervical Injection, my CRPS "Specialist" thought that might be the problem, was hoping it was not CRPS. Talk about PAIN! Yes, I had a bone spur on my left cervical spine which is pressing into my nerve canal...but whatever he did made my pain worse all over all the time. Burning pain...miserable, couldn't sleep...torturous pain. Called his receptionist a few times in tears, took her forever to call me back with an appointment, like it took two weeks for someone to see me crying like this. So he sees me and sympathizes...and does the following
Took me off the Gabapentin I had been on for about a year or so and put me on Topomax and Tramadol. It worked for like a month and a half and I felt great, but now my hands are puffing and burning all the time! Maybe I need a medication adjustment? My neck has been fine since the injection for the most part though ever since...

I am very concerned about my prognosis and what the future will hold for me
Of course you are...and that is precisely why I'm so frustrated with my doctor and his insensitivity on the subject. He calls himself a Complex Regional Pain "Specialist". He deals with Chronic Pain. (PERIOD) My Attorney asked for his medical report after his injection and when he sent it to her, he wrote that he thought the Epidural Injection was successful and that he felt my Neuropathy was from an anxiety disorder rather than Complex Regional Pain based on my emotional state during my office visit with him. (While I was in extreme pain, sleep deprived mind you). He mentioned my talking about "fear of the future and how he feels I should seek counseling and used the word 'unstable' " and stated I was in a "fragile state of mind and he did not feel it was safe at the time to suggest it".
Now...I would like to point out...I simply sat there with tears in my eyes explaining my pain to him. He didn't even touch me or look at my limbs at this time. He didn't look, at my other doctor reports at that time either, he said he never received them, even though I had faxed them to his receptionist. Yes, I admit it...I told him I was worried the pain would never stop, it had spread, I was worried about my future, I had muscle loss already...of course I said that!!!!!!! You would think by reading his report I pinned him up against a wall or something...It's not like I was uncontrollably crying in his office, I wasn't. I was a woman in pain, that's all. (Perhaps he has poor memory recall?)

I remember once I spoke with Eric Philips when I first started having symptoms, when no one could figure out what was wrong with me. Even my Neurologist and Eric was nice enough to explain RSD to me and how to go about getting treatment etc. When I asked him what was going to happen with me he said "Anything can happen", I said "What does that mean?" he said "ANYTHING". And unfortunately he's right. It may stop or it may spread, no one knows and that uncertainty is the worst.

Well Numb,

Again it was nice to meet you. I hope this helped somewhat. I think coping skills are important, I hope you have found yours, I know for me they are what keep me somewhat hopeful...I still have some fight in me.


If there is anything I can do, please don't hesitate to ask!


Melissa



Love is stronger than pain!