That's a very good point, James, about treating an "illness symptom" not an "illness suspicion". I think one important thing is to recognize that symptoms can belong to many different illnesses and while we might not doubt that someone suffers from specific symptoms, including significant pain, those symptoms do not necessarily point to a particular disease.
When I first started to develop symptoms, my GP and I explored all sorts of possible diagnoses and briefly suspected lupus (SLE). I could check off about four of the necessary diagnostic criteria. I found a lupus support site and listed my symptoms and several members reassured me it sounded exactly like lupus. These were peripheral symptoms, mind you, not the most serious symptoms, but the deal was that if you had something like five out of eight, then bingo, positive diagnosis! I briefly became convinced. My first rheumy said abolutely no way and very briefly I was annoyed by that. I thought, I don't want lupus but if it's that then at least I can deal with it. Since then I've thought, boy, I'm glad it wasn't that.
I went back to the lupus board and told them that the rheumy said no. I immediately got rousing support from others who declared that rheumies are useless and go back and demand a diagnosis etc! Fortunately, I came to my senses and tried to be more objective. If it was lupus, it certainly wasn't a classic version. So I decided to wait and see how things developed.
Changing my perspective helped enormously. I got less obsessed and as the weeks went by other symptoms developed which led to a tentative diagnosis of AS or at least an autoimmune disease. Then it became clear it wasn't AS, - no spinal involvement, which I've since come to realize is THE key symptom of AS that distinguishes it from other autoimmune arthralgias. Finally, the classic symptoms of RA showed up (hand and wrist involvement etc.)
This experience has influenced my attitude to the process of diagnosis. I'm much more cautious now about self-diagnosis and "influencing" my doctors to try and convince them. I think time will tell.
In the meantime, I have huge sympathy with everyone who suffers symptoms that make life difficult. Chronic pain is miserable and can be hard to comprehend, encouraging accusations of malingering. I'm sure everyone at KA understands and sympathises with people who are suffering while those around them don't understand and don't care.
James, you really hit the nail on the head with your comment about seeking safe treatment that works without spending your life trying to conclude what's wrong with you.
