Mama, I got the rheumies! (or, Finding out I had rheumatoid arthritis)

Last October, I was diagnosed with rheumatoid arthritis. That was kind of a bummer, because last summer, I was diagnosed with fibromyalgia. And prior to that, I was diagnosed with chronic migraines and IBS and herniated discs and occipital neuralgia… ya that’s all the physical things in a nutshell. Okay there’s some others but I can FEEL you getting bored.

So you can see how I was a little… disturbed. A normal person would be disturbed by that diagnosis. But I’d spent several years getting increasingly sick and isolated. I spent a lot of time on my couch, not seeing my friends. Canceling on plans I’d actually managed to make with friends or family. Becoming a hermit. Not going out to restaurants with my boyfriend very often (if ever, okay, to be honest). Doing almost nothing outside other than playing pinball occasionally and traveling to and from the office, which was a rarity because I worked from home most of the time. It was exceptionally depressing.

When I was diagnosed with rheumatoid arthritis, everything fell into place. Why were my headaches getting worse and worse? Not just because of the fall I’d sustained when I was 16, but because my immune system was attacking the top joint in my neck (that’s the only joint in your spine, btw). Why all the gastrointestinal problems over the last several years? Well, people with RA happen to have a lot of gastrointestinal problems. Why did I get sesamoiditis a while back and end up with my foot in a boot for several months? Because it wasn’t sesamoiditis at all. It was a rheumatoid arthritis flare and my then-doctor was wrong… which happens all the time. In fact, having a flare-up in that particular joint is very common as a first-place for a rheumatoid arthritis flare. Diagnosing RA is a real bitch and often takes years. You need to do a lot of tests (blood tests, sometimes xrays, sometimes MRIs, you need to see a few different kinds of specialists to rule out certain things, which I’d already done prior to seeing a rheumatologist). Plus you talk to the rheumatologist about your history, of course. They look at your joints, talk about stiffness in the morning (hehehe). WELL I have it, folks. I have it. It runs in my family, and poof, I have it.

I’d been getting sicker and sicker for years, and now I know why, FINALLY. A DIAGNOSIS. If you are a chronically sick person, you know exactly what kind of feeling I had in that diagnostic moment. Terror? Yes. But relief? Also, yes. It’s horrible not knowing what’s wrong with you. When I found out what was wrong, though, I could finally do something about it. That put me, at long last, on the offensive. I had power. I had agency. Look the fuck out, because I’d spent years being attacked by my body and finally had the opportunity to do something about it. I was about to get very aggressive…

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8 responses

    • Worried about RA? I saw you do have a nasty collection of health issues (I am familiar with that problem). I wasn’t thinking about RA after I got the fibro diagnosis until I was having a hard time moving around in the mornings. I kind of felt like my ankles wouldn’t really unstick for a few hours. They’d be so stiff and crack all over the place (they still do, just not as bad now that I’m all medicated and such). Then the stiffness and more focused joint pain (as opposed to generalized pain I get from fibro) started to spread, scaring the crap out of me. That’s when I knew something else was going on in addition to the fibromyalgia. If you already have a rheumatologist for the fibro you can always talk to them about it, but if not (and you’re worried about it) maybe you should look into finding a good rheumatologist. For what it’s worth, getting this diagnosis was the best thing to happen to me in about 5 years (RA is the fucking worst, but getting the diagnosis was GOOD). I’m more active now because I’m treated for the underlying condition instead of sitting there untreated.

      • All of my joints get “frozen” feeling regularly and feel swollen quite regularly. Especially my hands and ankles/feet/toes. My knees are pretty bad too, but I’ve had problems with them since I was 12. My hands have gotten to the point that I can’t open my prescription bottles anymore without a lot of pain. My physical therapist keeps mentioning she thinks I might have something arthritic on, but since I have JHS she isn’t sure if it’s RA or OA related. I see a rheum for my fibro, actually. He did run some blood testing initially, and they were negative, but that was a few years ago and the swelling feeling and stiffness have gotten exponentially worse since then. So now I’m not really sure but something send very off with my joints that seems very similar to RA (to my non-doc mind and no personal experience opinion)

  1. 😦 That sucks! Things like RA do develop over time, so it’s definitely worth getting rechecked in my opinion. Plus blood tests alone are not enough to be diagnosed. RA is a complicated disease to diagnose. There are blood tests for RA but you can test negative for all of them and still have RA. AND diagnostic testing for RA has changed a lot over time. Did you see a rheumatologist or an internist? That, too, makes a big difference.

  2. Thank you for writing. Just received a diagnosis of RA. Healthy prior to the RA pain that developed over the summer – nary a problem and then hit by a ton of bricks. Trying to wrap my head around it. Thank god for Law & Order marathons.

  3. Recently diagnosed with RA, and lifelong chronic migraine. The migraines seem to be getting more frequent and more severe; your idea that this is related to the joint in the spine makes sense. Has this been confirmed/commented on by your/a doctor?

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