Anyone dealing with CRPS

I'm sorry you are going through this. My CRPS started 8 years ago. I felt like I was on fire and clothing, everything that even softly touched me HURT. It's been 8 years now, and it's "better" but I still have it. The parts of my body that had the initial trauma are numb but still hurt when touched a certain way- hard to explain. There really isn't any cure. Most Dr's don't understand it. I"m glad you have someone who does. Best of luck and good health to you. Keep a positive attitude 🙂

I have been dealing with this for 40 years. I could not understand why no one believe me that something was wrong when this first happened to me those 40 long years ago. I was diagnosed with hand/shoulder disease of the upper body, just renamed to RSD, (which when I said it sounded like RSP) 20 years ago. I knew something was not right. I could feel it. The funny part of this when I was first told I had this, the doctor just said I'm sorry, we don't know how to treat this and here are prescriptions for muscle relaxers, depression and referral to psychology. Then just got up and left. Never got those prescriptions filled. Went to the library first and could not find anything on this "disease". Sorry internet was just in its infancy. The biggest thing was aol, you got mail. It took about ten more years before anything was published, but that was only a couple of pages. Today much more information is out there. Still have a long way to go on why it happens, how it happens, and how to treat it. I have found out that when I go to an appointment the first thing I say is this is what my body is saying. I know it will not make sense, but it is the best way I can do it. Now write down what you want and let's get started. I no longer shake hand or fit bumps. That gets me into trouble all the time. I am sorry it causes me too much pain and burn when the vertebrae in my neck slip out of place. Please just a gentle air hug. Thank you.

I have been doing this for around 40 years. The initial area for me is also numb and does what it wants to do. That is also true with the rest of my body. I love the game we play every second on where it will show its ugly head. Right now, it is having fun with digestive, heart, neck, eyes and ears. Teeth and throat just went through a cycle. Neck, eyes and ears have been going on for the last couple of days. Yes, I have it all over. If anyone touches me and I am not ready to accept the touch, let's just say it is not a pretty picture. All we can do is help each other. Comparing notes helps too.