If you have chronic pain like I do, you know that doctors look for a physical cause, some test or some sign that gives them the basis for a diagnosis. They refer, they suggest, they offer possibilities, but they don't diagnose without concrete proof. In the meantime, the patient waits for months or more likely years, suffering the symptoms without bonafide relief from the pain.
My own undiagnosed pain went on for years. One doctor would look at the degeneration in my back and say that I really shouldn't be hurting this much. I would ask them then why I was hurting so much. What I felt like saying was, "Look, I'm not crazy. I really am dealing with something here!" Yet without a diagnosis, doctors didn't know how to treat me aside from painkillers and antispasmodics.
After doing a lot of research between my wife and I, we got an appointment with a new specialist. We came to the appointment with an agenda. We wanted to rule out a few different diagnoses of what we thought it could be. Among them was Fibromyalgia Syndrome, and that was what it turned out to be. The day we had our diagnosis was not a horrible day; it was a good day. At last, we knew what we were dealing with and we could treat it with the things known to help with FMS. We could go to doctors and tell them I wasn't crazy, that it was more than just osteoarthritis, it was Fibromyalgia.
There are a lot of myths and notions about Fibromyalgia, even among doctors, and educating people about FMS, what it is and is not, etc., ends up being a lot of what we do. But we have a voice and people are listening, even doctors... the good ones anyway.
I found my story to have striking similarities to Cynthia Toussaint. Her story is encouraging. Please take some time to read it, and if you know a woman who suffers without a diagnosis, she has a friend in forgrace.org.
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