The first doctor
I started having symptoms of fibromyalgia in the early 1990s. Because I had had juvenile rheumatoid arthritis (JRA) when I was younger, I thought the symptoms were returning. I didn't have a family doctor at the time. I saw a doctor who asked me questions about my sleep patterns and did the pressure-point test. He said I had "fibrositis" and prescribed amitriptylene. The dosage was too high, and he hadn't even told me to take it at night. As it turns out, this diagnosis was on the right track. But without more information and support, it was useless. The meds knocked me out, I couldn't even get the doctor on the phone to ask a question, and I gave up.
The bad doctor
Some time later, with better health insurance, I found a family doctor. He threw out the fibrositis diagnosis, telling me it was a "garbage can" name for a syndrome that didn't really exist. He said the press-test sensitivity was from stiff muscles. He said I had rheumatoid arthritis (RA). My bloodwork didn't show RA, but that didn't trouble me, as I had had JRA without the proper blood numbers. Turns out you can have JRA without the numbers, but not RA. But I trusted the diagnosis because I had had JRA, and because I had very little information on this thing called fibrositis. This was before the internet; access to medical information was very different.
RA is a serious autoimmune disease, very different (and much more serious) than osteoarthritis or fibromyalgia. I went to a medical library to read up on the disease, and was very upset by what I learned, especially as there is lupus and other autoimmune diseases in my family.
This doctor prescribed various medications for RA, and he told me there was no reason to see a rheumatologist, because a specialist would only do what he was doing. Turns out the HMO provided plenty of financial incentive for doctors to not refer to specialists. I didn't know that then, either.
I continued on the course of treatment for RA, taking the wrong medication, never feeling well, and gradually becoming sicker and sicker. I was intimidated by my doctor, and anytime I tried to assert myself, he overruled me. I'm a very assertive person, not easily intimidated, but for some reason, this doctor was controlling my treatment.
Any symptoms that didn't square with his RA diagnosis, he brushed aside and ignored. When I said I was experiencing tremendous fatigue, he correctly tested me for lupus. But when those test results were negative, he had no other explanation for the fatigue, so he proceeded as if I had never mentioned it.
Because I didn't feel well, I wasn't getting much exercise, and I was beginning to slowly gain weight. I was not an unhealthy weight, but this doctor harassed me about my weight on every visit. When I told him my knees hurt, he said that was because I was overweight. But that was completely backwards! I had gained weight because my knees hurt, not the other way around!
My pain continued to worsen. I was exhausted and fatigued. I obsessed over weight-loss but could never lose weight, partly (as I later discovered) because taking the wrong medication for so many years had messed up my metabolism. I felt like I was falling apart.
Finally, there came a last straw. I asked him for stronger medication for my knee pain, and he suggested I go on anti-depressants. Now, I am not at all against anti-depressants. My partner suffers from clinical depression and anti-depressants have saved our life together. But this doctor had it completely backwards. My pain wasn't caused by depression. If I was depressed, it was because I was so tired of being in pain!
I was furious that he was suggesting the problem was depression. I demanded he give me a referral to a rheumatologist. This time when he tried to talk me out of it, I insisted.
The rheumatologist correctly diagnosed me in five minutes. He asked me a bunch of questions about my sleep patterns, headaches, mental confusion, and fatigue. He did the pressure-point test. He said it was very clear. I had fibromyalgia, as well as a form of osteoarthritis called Jaccoud Syndrome, common to people who have had JRA.
He gave me some pamphlets to read about fibromyalgia (at the time called Fibromyalgia Syndrome, or FMS) and prescribed completely different medication.
I never saw the other doctor again.
Finding the good doctor
Getting the new diagnosis blew me away. I couldn't believe that I had erroneously thought I had a very serious autoimmune disease all those years. My symptoms began in about 1991. Now it was 1998, and I felt so much worse, and only now understood why.
Coincidentally, I happened to mention to my GYN practitioner that I was dumping my family doctor and wanted to find a new doctor. She told me a few things that were really helpful.
One, she kept a list of female family doctors that her patients used and liked, to be able to recommend them to other patients. Two, she said I could work with my insurance company to sample as many doctors as I wanted. It would require a bit of effort, but it could be done. And three, she suggested that I have a consult with a doctor and ask a bunch of questions - essentially conduct an interview - and decide if I wanted to try the doctor before accepting any treatment.
My plan was to pick a name off the list, call the HMO, and tell them that I had a new family doctor. Once that doctor's name was listed as my family doctor with the HMO, I'd be covered, and I could book an appointment for this interview-consultation. Then I could call again, giving them the next name on the list. And so on. There was no limit to how many changes you could make, and it generally involved only one phone call per change. After my nightmare with Dr. Bad, this seemed entirely worth the effort.
As it turned out, the first person on the list worked out.
The good doctor
I knew right away that this doctor was different. She didn't wear a white coat. We sat in her office, not in an examining room. She answered my questions. She listened.
I told her that I knew something was wrong with my treatment, but that my doctor had refused to refer me to a specialist. She knew Dr. Bad, of course, and said, "I can't believe he's letting the HMOs ruin his practice. I can assure you that will never happen here. If you need to see a specialist, I will refer you. Period."
I also told her that Dr. Bad harassed me about my weight. I will never forget her reaction. She stood up a bit to get a fuller look at me over her desk. She asked, "Were you much heavier than you are now?" I said no, in fact, I weighed less then. She said, "Your weight is fine. There is no problem with your weight." I was stunned.
Dr. Good said she would work with me to reduce my symptoms as much as possible. She would suggest new ideas, things she had read about, ideas to try. She didn't tell me what to do - she made suggestions and asked, Do you want to try this? She thought creatively. It was her idea, for example, to use nortriptylene in liquid form, so I could gradually adjust the dosage. She helped me get my life back.
I did see the rheumatologist once in a while. I've had a few cortisone injections in my knee, wrist, and shoulder, and occasionally my family doctor wanted me to check in with the rheumatologist to make sure there was nothing new we should be doing. But in general my family doctor treated the fibromyalgia, because she believed it was an actual disease.
The Canadian doctor
When my partner and I emigrated to Canada, I was very concerned about finding a family doctor who would be comparable to Dr. Good. I was especially worried that a new doctor might not understand my treatment and so might refuse to prescribe what I needed.
My concerns were quickly erased. Fibromyalgia is widely known here in Canada. The Arthritis Society of Canada recognizes fibromyalgia and many similar conditions and lists them as forms of arthritis. (The Arthritis Foundation in the US does not.)
My treatment here has remained the same, with the additions of trying acupuncture and the two herbs I now take for mental functioning.