Most of my life I assumed doctors always knew more than me, And there is some truth to that but since I am super complicated health wise, I probably know more about my illnesses than most doctors. My amazing LLMD is the exception. Most doctors are either intimidated by me or are so stuck in their own ways that my health is put at risk. Thankfully most of the time I know better than to listen. If I had listened three years ago, I wouldn't be here to tell the tale.
My first diagnosis was RSD/CRPS in my right ankle. Later it traveled to my whole right leg as well as the left. About two years ago I noticed weird coloring in my hands and some pain. I immediately thought it was RSD/CRPS. My doctor at the time dismissed it but ran a test for arthritis that showed nothing. I had bigger health concerns at the time and I thought my doctor knew better, so I let it go. About a year ago the symptoms became worse and worse. I was sure the RSD/CRPS had spread. My new doctor wasn't convinced or concerned but sent me to physical therapy anyways. P.T. was helpful until I realized the agony of the drive was defeating the purpose. And then my only option was to use what I had learned and figure this out on my own. I've since been able to manage the pain naturally but it is progressing rapidly from my hands, up my arms, and in my neck and shoulders. Everything is becoming extremely challenging. I am more and more convinced that it's RSD/CRPS although there may be other things going on as well.
And here is where I am angry. Angry that my concerns are constantly dismissed. Also, angry at myself for putting so much trust in doctors instead of listening to my gut. I want to believe them but I can't go in blindly assuming they know everything.
Only recently I learned that high doses of Vitamin C might lessen the risk of RSD/CRPS spreading. I wish my doctor would have told me that when I first went with concerns. It may have done nothing but it would have showed that my doctor was listening and took the time to research. Instead I walked away feeling like I was over thinking things and I began to dismiss the pain. Today typing this post is incredibly painful, I wonder if things could have been different.
The pain in my arms and shoulders are reminding me that this is reality. Better days could always be ahead. But if this post helps one person not dismiss their pain because of their doctor's response, then my job is done. Pain is telling us something is wrong, it should never be dismissed.