Oh boy. Mine is always recognized. Like I am an elusive white unicorn they have come upon in the woods. Some Doctors are very happy to pick my brain about it because they have researched it but never seen it. Even still! Others have asked me to talk to their newly diagnosed patients to help them through it.

Mine always "looks" like something though. I have inflammation and discoloration in my skin. I imagine if it were invisible that they would dismiss me more often. The atrophy, color differences, edema, temperature fluctuations and capillary refill are always an issue. My reflexes are missing in that limb. They can physically find reasons to believe in it. I don't think they would be so nice if they didn't see all of that physical stuff.

I start appointments with new Doctors by showing them a picture of what it looks like on me. It helps qualify the diagnosis quite a bit. If they don't think it's a big deal, I tell them how well I am doing by comparison and how it used to look/feel and how debilitating it was vs. now when I just hurt a lot.

You could see it on my bone scan too. My Qualitiative Sensory Testing was a bust, no function at all. My skin punch biopsies revealed severe small nerve fiber neuropathy. They measured how much my leg had atrophied and the temperature difference between my legs was almost 10 degrees. The Bone Scan is one piece of the puzzle. Let him put the rest of the pieces together for the whole picture - this one seems to be a skeptic. I'm sorry that you're going through it. If you have a Doctor who does not recognize this, he is not helping you.

I recently saw a counselor for unrelated issues. I was her white unicorn. The only RSD she had seen outside of clinic. She told me her talks usually involve stories of RSD/CRPS patients because it is the worst pain you can have and people dismiss it because they can't see it. I think she pointed me in the direction of the pain index that CRPS is at the top of the chart for. In any case, she uses our diagnosis as her example of how people with pain should not be labeled as mental health cases. It just means they don't understand our pain yet. People with CRPS tend to have a really high pain tolerance too so by the time you know we are in pain, it's probably worse than "normal" people can tolerate. Hang in there, and find a new Doctor who wants to help you. Pain Medicine should be a good place because at least they have seen this before.