OK, had to follow you here; your introduction certainly moved me. From these details, you and I are quite similar in onset cause (hands with damaged nerves from invasive events). I was on the top step of an 8' step ladder, painting the outside of the house (yes, the step that says "Don't stand on this step"). Had just opened a new can of $29 paint (way pricy back then) when the ladder started to wobble. Fine, fall over ladder, but I'm not losing this can of paint! Somehow, I reached THRU the upper part of the "V" at the SIDE of the step ladder. The ladder collapsed, as they do when operated incorrectly, and I did a faceplant; the can tumbled away, painting the yard. Over half my body laid fully atop the collapsed ladder - I don't remember initial pain. I do remember seeing my arm, the protruding bones and blood, briefly fascinated that the back of my hand nearly rested on my forearm... then barrel-rolling and screaming until a big tree stopped me. The ex and my business partner got me in the house. Both fainted, and I drove myself to the hospital. The on-call (4th of July) ortho Dr said "Say hello to your little friend". (Yes, I love the old movie Scarface). I will finish with me by saying, there is no remission, there is a possibility of limiting spread, there can be life without just "sucking it up", and you can educate family (you'll learn some mental reinforcements as you guide them to reality and of understanding what you are dealing with).

Questions for you first:

- Is your hand/arm skin still glossy, shiny? Compare it to unaffected body parts if you have not noticed, or are unsure of my question. It's truly like a sheen on water from things like oil. Look for this from 360-degrees; top, bottom, between fingers, every millimeter of affected areas.
- Do you still have heavy perspiration (it's not, really) to the level of raindrops? Or a weak shower? That which would saturate tissue, paper?
- Do you keep a redness log daily? From brilliant, fire-engine red, to almost pink? Do you also map the color to where you would rate to a stove? (broiler, burner on high, low warming on glasstops) - and your pain level (account for time from last pain pill, if you take them)
- Does your swelling coincide with all, some, none of the above?
- Have you or do you still have regular corn husk therapy (think the proper tech/med term is Fluido Therapy - say corn husks to any PT/OT and they will know, instantly)
- Have you/do you have regular parafin therapy?
- Have you/do you have regular weight sessions that only includes walking while carrying a hand barbell, HANGING DOWN (increasing weight as tolerated)
-Have you/do you have regular sessions with the small child's bead maze "toy from HeLLo"? Have to post a link here that shows examples of what I mean; don't know their real name, their pure sight elicits abject terror for me : http://www.sensoryedge.com/mazes.html

To start educating your family, do web searches on RSD and the Civil War. Dr. Silas Weir Mitchell. Don't stop with the first one or two you find. Some out there, now, are very biased (for drug companies, infuriation of the long existence of PTSD, phantom limb pain, and current military benefits). Look for historical and medical articles. RSD's (causalgia then, CRPS now) true surface breakthrough came from Civil War injuries like limbs blown off from cannon and amputation without anesthesia and pain medication. It's real, it's old, and is controlled to differing extent with modern medicine.

Wow, this got long! If you answer, I will continue with more commentary from your answers. It may take a bit. I have a long, painful procedure tomorrow to pinpoint what recently killed my hands for good. Outcomes will not bring me improvement; just to allow a good Neurologist to write an article for his peers. Hey, it might help a future patient. He's not charging - I just pay in pain instead of dollars. Hang in there!!