Mine started in my left ankle and is now in the whole leg, both arms including both hands, my torso, and my neck...and in my abdomen after my Csection when I gave birth 3 years ago. When the spread first started to happen, I had pretty much every test known to man to check for what else it could be...but deep down I knew it was spread even if I didn't really want to admit it. Once I accepted it and my doctors ruled out everything else and started treating it, the spreading basically stopped and I'm just short of full body and hoping to avoid any more spread. Some may say that I'm extra cautious with certain things...but if any of those precautions help avoid spread then totally worth it.

I have had CRPS for 15+ years. While my original site doesn't respond to blocks, new areas still do. Ketamine infusions, hyper baric treatments and steroids have also helped calm down new spread. If Lidocaine patches work, use them. Etc. You want to try everything possible, asap.

When it started to spread to the left foot my doc ordered a sympathetic block ASAP (as in w/in a week or two) and it stopped it in its tracks. SO it hasn't moved past just the heel. But yes, bright red, hot, piercing tingles that are so painful. So IF you can, you need ASAP block to halt the spread. You can't make it go away, but you can keep it from moving forward if the doc will act swiftly and aggressively. Also, do what you can to be aggressive PT wise. I.e. don't let it tell you not to use it (whatever is getting red/etc.) Cause as we know if we stop using the area it only gets worse. So I made myself treat that foot normally, keep walking on it etc.

I don't remember where I read it, but I have read more than once about CRPS/RSD affecting eyes/vision in some people.

Everyone is different in how they respond to blocks (like all things CRPS related), and even the technique of the doctor can make a difference. I literally woke up screaming about my shoulder after my hysterectomy. I did have a rotator cuff tear, but it was severe CRPS pain that was the issue. I also had swelling, it got very hot, and I had a bad rash. My shoulder still has the structural issue, but 5 weeks after the block, the spread hasn't returned.