It’s Not Lupus.



Well, for now, at least.

I went back to my rheumatologist, because – hey! It’s April! – and I told her that I had cheated on her with the naturopath from Arizona and that LDN was working for me, for the most part.

She was like, “Oh. Good!”

What would have been even better is if she would have given me the low dose naltrexone herself when I first brought it up four months ago, but… no matter. (That’s a lie. It totally matters. Sigh.)

Anyway, I told her that my pain had gotten better while on it, not completely gone, but not as bad as it was. I said that some new things had popped up – headaches, weird muscle pain, itchiness/rashes. I told her how, when I tried to race my 8k this past weekend, my foot went numb. I asked her if any of this might be related.

And she said, “I have no clue about your leg or your foot.”

At least she was honest.

She suggested that if the pain kept up, we’d do a test called an EMG (electromyography), where they stick needle electrodes directly into your muscle, which sounds completely not-at-all painful.

Then she did her examination, which consisted of pressing on me, and asking, “Does this hurt? Here? Not here?” It hurt in more places than it didn’t.

She then diagnosed me with fibromyalgia but said she wasn’t going to rule out lupus entirely. It was just that she didn’t have enough evidence to say it was lupus, but the pain sensitivities were consistent with fibro. She recommended I keep doing Pilates to support my core (apparently core strength isn’t great in people who have autoimmune disorders), start doing physical therapy, and talk to my primary about antidepressants that may help.

I went home and told Paul about it, and he said I was surprisingly chipper. From my view, though, it’s the first time in almost a year that anyone’s given me an answer for anything, and that was fucking amazing.

Then we set about the task of gorging ourselves on all things fibromyalgia. Most importantly, I would not die. Which is good, because I think about death an awful lot (example: at the race, at about the time my leg started to hurt, I got a headache on the side of my head and thought, “Oh, I’m about to have an aneurysm,” and then my foot went numb. So not only was I limping, but I was also quietly panicking, wondering how long it would take me to die, and if I’d get feeling back before it happened. Yes, friends: this is my life. I don’t know why my mind chooses these avenues, but it does, and I merely strap myself in and go for the unfortunate ride).

“Recommendations include sleep, healthy diet, and getting enough exercise,” Paul said.

“Shut the fuck up,” I responded. “You’re making that up.”

“No, it’s right here, on the Wikipedia page.”

So then I had to go to Wikipedia, and sure as shit, those fucking words.

“So maybe we can get you a ‘Sorry You Have Fibromyalgia’ cake, and then I’ll just eat it in front of you,” he offered.

(In moments like these, it is beneficial to remember that I love this man, with all of my heart. I’m sure he feels the same way about me, especially when I just leave shit all over the house. His absolute favorite thing is when I eat something, and just leave the dish in the sink without putting it in the dishwasher. He actually told me that he loves me 100% but when I do that, he loves me 98.7% instead. But I’m like, hey dude, I am who I am and that’s all that I am. #sinkdishesforlife)

I don’t want to go on all the medications in the world for this, either. Only 30% of medications are effective, and most of the side effects are awful. Often times there’s comorbidity with depression and anxiety (which I am no stranger to, by now) so sometimes those types of medications help somewhat.

I’m going to talk to the Pilates place I go to and see what my options are. I registered for physical therapy (I’m having flashbacks to PT as a kid…owwww) and that starts at the end of the month. I need to schedule a CT for lymphedema for my leg issue, and I have a doctor’s appointment Monday to follow up on the diagnosis.

I’m super lucky to have a great support system for all of this. It’s funny to me that, you know, autoimmune disorders typically worsen with stress, and the whole thing is stressful. So you’re not supposed to stress, everything’s supposed to be wine and fucking roses, but you’re stressing about stressing anyway. Paul said he’d help me in whatever way I needed, which is help enough. He said he kinda feels bad because I didn’t have this before we met, so he somehow feels responsible, but I tried to explain that I likely DID have this, it just came out when it did.

I’ve always been spectacularly bad at managing stress and that’s no one’s fault but my own. But when I think about this time last year, and where I was, it’s laughable. I am 10000% happier and I am positive that things can only get better – autoimmune bullshit be damned.

Have a good night, friends. I have a date-night-in with the boy, and this pizza isn’t gonna eat itself (you didn’t think I was going to automatically start eating fish-oiled kale chips, did you?). Be kind to yourselves.

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