I completely understand how you feel.
When reactive arthritis was diagnosed 30 years ago, I didn't get an immediate diagnosis. I made a couple of doctor visits first. The back pain was brushed off as "normal pain" and a new mattress was the first recommendation along with taking ibuprofen. I knew it wasn't the mattress but I took ibuprofen.
The strange thing about the back pain was that it got worse at night after I fell asleep. The pain would wake me up and I needed to stay awake for the pain to improve. I didn't have too much pain during the day at my doctor visit.
I made a second doctor appointment and claimed my bedroom had become a torture chamber. I don't think the doctor took me seriously and only recommended more ibuprofen which I think caused some serious diarrhea.
My third visit was to an emergency room. I thought I had a stroke or something after I retched my guts up for an hour. There was nothing at all in my stomach so I don't know what the retching was all about.
After I retched, my left eye was beet red and my right eye was "fixed and dilated." I thought surely I had a stroke. It turned out that my right pupil was responding normally to retching but my left eye didn't dilate as it should have. The ER doctor thought it was strange that my left pupil wouldn't dilate at all.
I told the emergency room doctor how crazy it all was. I was worried about a stroke more than anything. The doctor downplayed the stroke idea because I was too coherent. He did note how red my left eye was. He got some labs which proved that I was seriously dehydrated. They stabilized me in the emergency room with IV fluids but I wasn't hospitalized. That made me wonder what it took to get admitted to a hospital. I thought being hospitalized was warranted.
The emergency room doctor thought I would survive overnight. He made an urgent appointment to an internal medicine doctor for 8 a.m. in the morning. It was already after midnight so I didn't have to wait long. I considered camping out in the emergency room because I wasn't so sure that I would survive until morning.
I was sent home with narcotics and Lomotil to stop the diarrhea. I didn't sleep that night because of excruciating back pain. My red eye got worse overnight. I drove myself back to the hospital but that was dangerous because the drive was heading east at sunrise and my left eye was extremely photophobic and very painful. I drove with only one eye open.
The internal medicine doctor prioritized my eye first and sent me to an ophthalmologist who diagnosed uveitis.
I think it was the uveitis and being HLA-B27 positive that gave me credibility, with the medical doctors. Otherwise, I doubt they would have believed me. I can't blame them for that because I had a hard time believing it myself. If someone had an identical experience as I did and told me about it --- I wouldn't believe it either.
I'm a self-deprecating sort of person. I have good relationships with most of my health care providers. However, there have been a few doctors who I have a hard time with being forgiving.
Wow, a new mattress; that was the “plan of care”? Cringe.
I feel like we chronic pain warriors could write a book (or maybe create a discussion here) of all the crazy things people (including medical professionals) have recommended for pain. So far, my two most ridiculous things from professionals have been: “Try not to think about it.” And: “Maybe a foot massage and pedicure would help.” Those were both recommendations from neurologist at one of the “top 10 ranked programs in neurology” in the nation as they like to say, in reference to my small fiber neuropathy.