… back to baseline. But it is a rare physician indeed that has any concept of what this is all about. Perhaps your autoimmune disease has some markers that are measurable during your flare ups like the one you wrote about. I bet there are other components of the flare that are just as real that do not have measurable markers…..except for the increase in the impaired mobility that goes with the pain.
Hi Rick Dobson, thank you so much for taking the time to read and respond. Your words — coming from a medical practitioner — are very needed and appreciated.
I highlighted this part because YES. So much THIS. I can’t tell you how many times in the past where I was in the ER, sometimes even admitted to the hospital for days at a time due to relentless pain and/or discomfort or other disabling symptoms, that nobody could find the source of. Test after test would come back “unremarkable.” Which would normally be good news, but not when a patient knows there’s something wrong. In that situation, to be told “sorry but we can’t find anything” is one of my worst nightmares.
In one case, I’d been vomiting for hours, was very dehydrated, had a high fever, and then the widespread upper abdominal/chest pain started. Intense. Like a metal stake was being driven through the middle of my chest area. My husband called an ambulance because I couldn’t get up off the floor. The ER ran every test imaginable, all while I continued vomiting and being absolutely miserable. Among the few ambiguous things they found was a high white blood cell count. But they couldn’t find infection anywhere.
I was admitted to the hospital. On about day 4, I remember one nurse coming in to check my vitals. She’d just arrived for her shift; I hadn’t seen her yet. Soon I got to fill her in on my symptoms, and without hesitation she said, “have they not checked you for gallstones? Because that’s what it sounds like to me.”
No they had not. And when I requested testing to find out if it was gallstones or something with my gallbladder, I learned real quick that doctors don’t like for patients to even suggest that they might have a hunch about what’s wrong with their own bodies or what tests they might need. I was refused any testing on that.