RA begins differently for everyone. Fatigue, problems with my throat and neck (eight years after onset of this symptom I discovered this might be RA affecting the cricoarytenoid joint), one-time major inflammation of one hand, hip pain, snake-like scales on my shins and arms, sore knees, elbows, and shoulders… For a healthy person, I couldn’t believe all the things that were going wrong! These symptoms are discussed more fully in Part 1 and Part 2.
The weirdest thing that happened – and drove my family crazy - was when I developed a craving for garlic. I’d eat four cloves of garlic in my egg in the morning, or an entire bulb in my soup at lunchtime. Maybe both, and add some to supper, too. Nobody else in the family likes much garlic, so I had to prepare my food separately. It tasted wonderful, but I wondered about the vast quantities I was consuming since food cravings can sometimes be a sign of a health issue. One day we were driving down the road and my husband started sniffing the air, then turned to me accusingly, “Have you been eating garlic again?!” Until then, he hadn’t realized how much I’d been eating – and I didn’t realize that the odor was oozing out my pores and could be smelled three feet away!*
Other things weren’t quite so amusing. My hips got progressively worse. Any time I rolled over in my sleep, the pain in my hips would awaken me. Both sides, but one was much worse than the other. Neither Tylenol nor ibuprofen helped. It hurt to sit down and it hurt to stand up. It hurt to walk. No longer could I ignore the situation or get busy enough to put it out of my mind. The pain was ever-present.
Finally I made an appointment with the doctor — for my kids to have a check-up. They were overdue (because I was too exhausted to schedule extra activities), a fact which made me feel like I was being negligent. Once the kids’ appointment was scheduled, I felt that it was acceptable to make an appointment for myself.
I made a doctor’s appointment, but saw the NP, not the MD. She thought it sounded like bursitis, but that didn’t make sense because I hadn’t had an injury. Prescriptions were written to relieve symptoms, and x-rays were ordered to see what was going on. Then (as with many appointments with the NP) we chatted a little bit. I casually mentioned the pain in my shoulders (in answer to a question – I wasn’t adding another concern). They hurt quite a bit, but nothing compared to my hips and I wasn’t really thinking that was something that needed to be addressed (sometimes I’m so stupid – I really thought they’d get better given enough rest). The NP looked puzzled and said, “Hmmm, that sounds like the rotator cuff.” In addition to the hip x-rays, she decided to send me to the lab for some blood work.
It’s been said that I march to the beat of a different drummer. Be that as it may, my lab results should still fall within normal limits. A few days later, the NP phoned to tell me the results of my tests. She’d explained that there’s more than one kind of arthritis, and that the x-rays of my hips did not show any osteoarthritis, but that I might have a different kind. My lab tests showed a positive titer on the ANA so she wanted to refer me to a rheumatologist.
I got a copy of the lab report and started searching for information. LabTestsOnline is a great resource. I learned about the ANA test, then read about the diseases that are associated with positive results. Am I the only one who finds it ironic that positive test results are a negative thing?
The lab report also suggested SCL-70 antibodies – the implication of which scared me more than anything I read about RA and SLE! The more I read, though, I was pretty sure that scleroderma was not a match for my symptoms so I dismissed that disease from my short list of things to worry about. For reasons I still can’t explain, I felt that SLE was more likely than RA (not that anyone ever asked).
It took two months to get an appointment at the rheumatologist’s office. Instead of seeing the doctor, I saw his PA. He performed the most thorough exam I’ve ever had and said that he wasn’t sure what was going on. He told me that it sounded like maybe it was early RA, but eventually the MD came in and he disagreed. The PA and MD had a little “discussion,” then left the room to hash it out without me overhearing what they had to say.
Eventually the PA returned and gave me a cortisone shot in my worst hip and said that he thought I had early RA as well as FMS. X-rays were taken and blood was drawn. I was prescribed more useless anti-inflammatories and a pain medication and given a referral to PT for the bursitis in my hip, then told to return for follow-up in one month.
No Longer Passive
Until this point in my life I had limited experience with doctors. Those experiences were generally along the lines of: show up at appointment, explain symptoms, maybe have tests, then follow the doctor’s orders. The appointment with the rheumatologist is when that changed.
I had a diagnosis that I didn’t know anything about. From the reading I’d done about my ANA results I wouldn’t have been surprised to hear a diagnosis of lupus, but I hadn’t expected to hear RA. I’d forgotten most of the RA info since that’s not what I thought I had. Time to learn! I made good use of online bookstores and my credit card, and a few days later had the resources to start learning about RA. Since he’d thrown in a diagnosis for FMS, I found information at that library and online about it, too. That diagnosis didn’t make any sense, and I was convinced that the PA was 100% wrong about it. Someday I’ll write more about that misdiagnosis.
The more I learned, the angrier I got at the PA. Why did he diagnose me with RA and then not treat me for it? RA should be treated with DMARDs; he gave me a pain killer and an anti-inflammatory.
Fortunately my follow-up was only a month later. Based on a list of questions I found (which I was going to link to, but the list at that site has since changed), I asked, “How sure are you that I have RA?” “Pretty sure,” he replied. My follow-up question was, “So why am I not taking a DMARD?” Apparently, since my RF was negative and my symptoms weren’t as obvious as they are with some people, he wanted to wait. Fortunately for my pain level, my joints do the tender/squishy/ouch thing more often than the huge/red/hot/Imgoingtodie thing. Unfortunately, that makes it harder to diagnose. Seven years of symptoms, finally a diagnosis, and I still didn’t qualify for treatment!
The PA ordered more tests. Only after my anti-CCP came back strongly positive did he finally started me on my first DMARD. And still provided no patient education. I got all my information from the internet and the books I’d purchased.
The PA always said that my diagnosis was RA. I got a copy of my records, though, and what he wrote in my chart notes and the letter back to my PCP was FMS and MCTD. Interestingly enough, when I changed to a different rheumatologist, her first letter to my PCP also said that the diagnosis was MCTD (but, thankfully, not FMS, which I never believed). Why would I be told different information than what’s written in my records? Just this past fall was the written diagnosis changed to RA.
Truth be told, I’m a little pissed that at my very first appointment RA was suspected, but despite all the literature recommending “early, aggressive treatment,” it took two years to figure out a treatment plan that works.
And now you know why I’ve never before told my onset story!
I later discovered that most herb books recommend garlic as an anti-inflammatory. Only after I started on 800mg ibuprofen three times a day did the garlic craving disappear.