Someone on the Internet Says Fibromyalgia is Fake

I belong to a couple of Facebook groups for people who, like me, have been diagnosed with fibromyalgia. Typically, I just lurk and glance at the conversations that pop up in my News Feed. Mostly I watch people talk about their symptoms, their struggles, their disability denials, their long list of doctors, their even longer list of prescriptions, and thank my lucky stars I'm getting by. Today, though, one of our group members found this post somewhere else on Facebook, and shared it to the support group's page. Several were understandably very upset.

Personally, I don't see that there's much point in being upset by anonymous trolls on the internet. Many people in the support group routinely share how hard it is to get family and friends to see them as anything but lazy pill poppers. So no need to go looking for drama.

Still, I can't help but comment here on the blog. Not to feed the troll, but to sort out my own thoughts. Both for me, and for anyone who doesn't know what it's like to live with chronic pain but thinks it might be edifying to read a more reasoned response than the gems tucked away in Facebook comments. (Fibro sufferers on Facebook mostly resorted to things like wishing FibroTroll™ had fibromylagia or posting a picture of J.C. flipping the bird with the caption "Even Jesus thinks you're a cunt.")

So, yeah. People are really touchy about this subject.

Let me just do this line by line...

Fibromyalgia is Latin for "seeking pain pills."

Cute, but no. The word fibromyalgia is a catchy little word made by combining a few Latin roots: "fibro" (connective tissue fibers), "my" (muscle), "al" (pain), and "gia" (condition of). Some people who have been diagnosed with fibro take pain pills; some don't.

I occasionally take Tylenol or Exedrin Migraine if the pain disrupts my sleep or prevents me from getting shit done or the migraines make me feel like I'm stroking out. Though I don't need anything stronger, I don't judge anyone who does. I get that people who don't experience pain on a daily basis don't understand this dependency on dirty pills Nancy Reagan taught us to fear more than the devil himself. And it's totally acceptable for those people not to understand. I don't know what it's like to be someone else either. But there's no need for anyone to be an asshole about any of it.

If you're not [seeking pain pills], you're misdiagnosed.

Fibromyalgia was my diagnosis only after a laundry list of other diagnoses had been explored, including but not limited to: hypothyroidism, MS, CFS, lupus, rheumatoid arthritis, depression, lyme disease, IBS, RLS, sleep apnea, and blah, blah, blah.

I have had hypothyroidism for more than a decade and was concurrently diagnosed with depression and fibromyalgia last fall. I may very well be misdiagnosed—it happens frequently enough with all kinds of syndromes and diseases and disorders—but until my doctor or the larger medical community comes up with better answers, fibromyalgia is all I have to work with.

The symptoms are vague; tired and achy.

Those might be the symptoms FibroTroll™ went to the doctor with, but I had a very specific list of symptoms that I talked to my doctor about. I tend to shorten this list a lot when talking to non-medical professionals for a few reasons: 1.) I don't want to rattle off the list repeatedly; it gets old 2.) I don't necessarily want to tell anyone face-to-face that some days I'm so inflexible wiping my ass is a struggle, and 3.) I can read body language and understand social cues. I know when you don't give a shit.

My doctor admitted it has always been a catch-all for undiagnosables.

And if you think FibroTroll™ is upset that no one has figured this stuff out yet, imagine how doctors and patients with the diagnosis must feel about it! I don't see anything wrong with the term fibromyalgia. The collection of symptoms related to fibromyalgia are common enough from patient to patient to merit them being grouped together and given a name. This one word makes my life a whole hell of a lot easier to talk about when I see a medical professional.

If there's one thing that singes my suction cups, it's people complaining about their fibro-frogging-myalgia.

Seriously, the only people I've run into that are offended by my being honest about how I feel are people who want to project their own selfishness back at me. Generally, these are people who don't want you to ask them for help because they have more self-gratifying things to do and they don't want to feel guilty about doing them. These people, once identified, are quickly relieved of the chore of being part of my life.

Seriously, if you are tired and hurty, there is another underlying reason and you need to find out what it is before it's too late.

I don't know why I didn't think of this! I'm calling my doctor right now to schedule an appoi...oh wait. No wait, I know! I'm calling up my doctor first thing to ask him if he'll order a few dozen MORE tests, this time for all the things that fibromyalgia doesn't mimic.

What do you want others to do for fibromyalgia awareness? Play you a violin?

Actually, no. Just understand that when people say they have fibromyalgia, they feel like shit. All you have to do after that is try not to be an asshole about it. You can even continue believing that people with fibromyalgia are making it all up if you want to—just keep it to yourself or start a Fibro Deniers support group or something.

Originally published on my old blog on January 20, 2015