"Just" Fibromyalgia: The Summary

Okay, this is it. Time for the dreaded and long-awaited summary.

I mentioned about two weeks back that I'd had a craptastic set of doctor's appointments and it was really bumming me out. In the words of Inigo, "Let me explain. No, there is too much. Let me sum up."

Pain doctor came first. It was a different doctor than I'd seen previously (and I liked the previous doctor because he actually freakin' listened to me and explained things!) because of shift changes and whatnot. I got to see one of the founders of the practice, and I was excited. Surely he must be good, because he is one of the founding fathers of this place that had the good doctor I was accustomed to in it, right? Right?

Wrong. He basically came in, spent about 7 minutes telling me that opioids are poison for fibromyalgia and that giving me pain killers is only going to reset my pain threshold at a higher level (my experience of pain, that is, not my ability to bear pain, alas). He is right, and there is medical evidence to support this, and I've heard the theory multiple times. However, given my current circumstances, that's a chance I'm just willing to take. No one has been able to stabilize my condition or get my pain under control yet, and I need those pain killers just to maintain my rockstar disabled lifestyle. It ain't easy being green, you know? Well, I was told by this "pain management specialist" (horse feathers!) that if I didn't have another diagnosis beyond fibromyalgia when I came back in a month for my next refill he was going to take me off of the pain killers.

What.

the.

fuck.

And get this-- not only did he NOT answer any of my questions (like, he just totally ignored them and steamrolled right over me!), he offered no other alternatives either. He never looked at the information I brought him, never talked about managing my pain, just that pain killers are bad and I need to be rid of them. Yeah, sure buddy. But if you would just fucking look at the goddamn pain journal I'd been meticulously keeping, maybe we could put our heads together and come  up with a plan to, oh I don't know, maybe manage my pain? Since this is purportedly a pain management clinic and all. (Though I begin to have my doubts…)

So there was that. The good doctor also pointedly ignored my nearly hysterical weeping over his proposed solution, as well as ignoring my questions and offering no information other than "opioids are poison for fibromyalgia". He said that so many freaking times… Well, I broke down for a good while and cried a lot, but Gramma was there, and was a great support. It wasn't just that I felt totally humiliated and invalidated, but my terror at the thought of a life without pain killers. He could not seem to wrap his mind around how violently ill I become when I have no pain meds, and neither could the head shrinker. I don't understand how they can just write people off like that? My next appointment with the psychiatrist didn't go so well, either. He is prepping me to accept the idea that the pain is somehow psychosomatic, originating from some sort of brain problem you know? (Because I have such a traumatic past and all.) I told him fine, but if it's my brain that's broken can we fix it? The answer I got was that he feels that with therapy I could improve in time. That is no kind of answer, buddy. That's a clever sidestep, and he's full of them. He won't commit to a single point for anything.

He also mentioned that it seems that when a doctor doesn't tell me what I want to hear (i.e. backing a conclusion I've come to on my own) or doesn't help me how I feel that they should then I label them a "bad doctor". I got the sense that he was telling me that the common denominator was me, not that I've had doctors who dicked around for a year and let me get this sick with no testing or anything. I've thought this over and I've since come to the conclusion that, as a patient, it is my right to "doctor shop", as it were. I do not have to put up with inferior health care just because I'm afraid of how it might look to some other doctor. Unfortunately, I do have to keep that in mind, because as a chronic illness patient I will be seeing doctors for a long time to come and if they think I'm doctor shopping to get meds or something I could run into some serious roadblocks. Isn't that so backwards???

So the psych appointment was incredibly disappointing as well, and I was crying so much and so hard that I ended up throwing up in the parking garage. Not a good day. Earlier this week I went back to the hospital in the big city to see my rheum, because I got lucky and they had an opening about a month earlier than my previously scheduled appointment (which would happen after my pain management appointment, thus putting any hope of a diagnosis outside of my one month window), and my grandparents were already going up there for a series of board meetings my gramma had to attend. It worked out great, ride-wise. Grampa dropped Gramma off at her meetings and then took me to my appointment. He even came in the room with me, which was nice because I totally needed moral support.

So here's the thing… The last appt I had with this doctor, I felt pretty disappointed and was upset. He told me he thought my problems were due to fibro, but was willing to look into the autoimmune side of things. This time, I was able to set aside my emotions and see that he really did everything he could and was supposed to do as a doctor, even if the results weren't what I wanted to hear at all. He was compassionate but thorough, and even though he could not think of any left field ideas of what might be ailing me (besides the fibro of course), he patted my shoulder on the way out and said he was sorry. He had to tell me that there's basically nothing he can do for me.

The results of the very comprehensive blood work show that not only do I not have lupus, but I don't have any of the other autoimmune diseases in that constellation of happy fun time. Diagnosis? "Just" fibromyalgia.

Here's the kicker: they (meaning the medical and scientific community) don't know what causes fibro, they barely know how to treat it (of the patients that respond to the medication, which really isn't many, they can expect to see a 20% improvement on average), and there's no cure as of yet. What that means for me on a practical level is, well, a few things...

1.) My pain killers, the only thing keeping me as sane and mobile as I am (which isn't much) are going to be taken away by the good doctor. (Although my next appointment is with a woman PA, and not Dr. Jerkface, so we'll see…)

2.) I have already exhausted all of the typical fibro treatments from both western and eastern medicine, and I'm still declining.

3.) I'm basically screwed. There is no reason to expect a reversal of symptoms, or even a stabilization for that matter. I'm only 26, so I get to look forward to a long life of excruciating pain, debilitating nausea and dizziness, and a whole host of other fun stuff. Best part? It's all due to a disease that some people still don't believe exists! It's not rare. You'd think they'd have more of this figured out by now. Ugh.

4.) The plans, hopes, and dreams I had for my life? They no longer apply. There's a difference between giving up and acknowledging reality and I'm not ready to give up just yet, but it would be sheer foolishness and stupidity to think that though I cannot stand long enough to cook myself a decent meal or sweep our tiny house clean because I get racked with agonizing muscle spasms that I will somehow be able to hike the Grand Canyon rim to rim. I use my walker every time I go out now. It helps alleviate some of the pain of walking and standing, it gives me a place to sit when I feel faint, and it helps me keep my balance and not randomly fall over or trip on nothing.

5.) I probably won't be able to bear children and have a family unless something drastically changes.

I'll write another post later on the feels I have about this whole thing, but I'm still trying to come to grips with the fact that it's "just" fibro. I could have sworn there was something else aggravating the fibro and making it super intense. How can it be this bad on its own? I totally don't understand...