I'm sorry that procedure isn't available to you.

Since my problem manifests itself in so many different ways, I'm not positive which symptom came first, but I believe it was pain that first showed up. Because I experienced bad pain in different parts of my body at different times, it was hard to pin down. Doctors finally diagnosed it as osteoarthritis and degenerative disc disease, since the back pain was the worst. X-rays did show degenerative joint and disc disease, and I did have to have my right shoulder and left knee replaced. But that didn't explain what I call the "free-floating" pain that would show up in my thighs, calves, chest, etc.

I developed restless leg syndrome after one of my surgeries and was diagnosed with severe obstructive sleep apnea soon after that. I was also having breathing difficulties, along with episodes that mimicked heart attacks, although my heart appeared "fine" on various tests. Such a "constellation of ailments," as one doctor called it, makes sense when you realize that it's a systemic problem, but unfortunately, most of my doctors saw it as anxiety attacks or worse yet, attention seeking.

Unfortunately, a combination of a lack of understanding of systemic diseases, the limited-time appointment system, an over-reliance on standard tests and common diagnoses, and a general distrust of patients' understanding of their own bodies has prolonged the diagnostic process.

In the 1970s, there was a big push towards holistic medicine, a way of looking at the whole body as connected (think of the way acupuncture and acupressure see the body), but over the years, medicine has become more and more specialized. The primary care physician is supposed to treat the whole body, and specialists focus on their own, sometimes tiny, area of expertise. I think it's because medical knowledge has expanded so much, but the problem is that most PCPs don't have the time or breadth of knowledge to keep up with every advancement and often miss signs of a larger problem. At least that's my theory based on my experience.

My experience has become so frustrating that I find myself crying or getting irritated in my appointments, which reinforces the anxiety diagnosis. I feel I have to fight to be heard sometimes as I advocate for myself, which makes me the "difficult patient." These perceptions end up in my visit notes and follow me from doctor to doctor. It's really been a nightmare!