What Untreated Fibromyalgia Feels Like

“For the person with fibromyalgia, it is as though the ‘volume control’ is turned up too high
in the brain’s pain processing centers.” —American College of Rheumatology

It’s been a little over 48 hours since my diagnosis, and I’m still not on the Cymbalta (actually, generic duloxetine) yet. So I thought this might be a good time to get a baseline for my symptoms and try to explain what it’s like to be me right now. Then, hopefully, in a few months I can look back at this post and be all like, “I feel like a rockstar compared to that. Fuck yeah!”


fibromyalgia and depressionLet’s get this one out of the way first.

For a while I have been getting randomly—and sometimes unexplainably—sad. There’s a sort of chicken-egg question for me when it comes to fibromyalgia and depression. If I didn’t have fibromyalgia, would I still be depressed? Or put another way, is the depression secondary to exhaustion from poor-quality sleep, which is secondary to being in perpetual pain? Or, am I both depressed and fibromyalgic?

It’d be interesting to know the answers to those questions, but in the end they’re not as important as the one question my rheumatologist asked me: Do you feel you get sad more easily?

Unequivocally, yes. In fact, a week earlier when the nurse practitioner first suspected fibromyalgia and mentioned another patient of hers being treated with Cymbalta (a drug name I remembered from my days working the front office of a psychiatric clinic) I got happy for a second. Maybe my mood will improve too, I thought. Because here’s the thing, if I could only get rid of one thing— the sadness or the pain—I’d get rid of the sadness.

My depression could certainly be more severe, and I’m thankful it isn’t. I can keep the tears in, especially in public. I’m not suicidal. And, like most people I am hesitant to be too forthcoming with details about how low I feel, even with those I’m close to, because I don’t want to be a total downer. But I absolutely know that I am not the person I was a year ago, and my doctor gets the unaltered truth about all of it for two reasons: 1.) I want to feel better, and 2.) listening to me complain about shit is in his job description.

Physical Pain

My right hamstring is a total bitch. It cramps up without provocation and aches when I walk. My muscles constantly feel like the day after a really tough workout. You might be thinking, I love that feeling! I always feel like I’ve really accomplished something when my muscles ache after a workout.

Yeah, I remember those days. But try feeling that way all day, every day for five or six months straight while you get fatter and the energy drains from you exponentially. The novelty wears off, cross my heart. And then one day you realize you can’t hold your hands above your head long enough to dry your hair or lift your leg high enough to step into your underwear.

The muscle pain is distinct from the sensory (nerve) pain. Remember when I said that shaving my legs felt like rubbing them with 24-grit sandpaper? That’s not an exaggeration. In fact, I got a 6-week jump on No Shave November. When my rheumatologist asked me to lift my pant legs up as part of the physical exam on Wednesday, I was mortified.

Hugs hurt. The things that have consistently helped me get through bad days since the beginning of my existence…hurt.


I attend a lot of meetings at my job and I yawn through them all, whether they’re boring or not. When Dan and I go shopping, I’m sucking wind by the time we reach the register. (If it’s a big box store, I’m hanging on his arm for dear life by the time we reach the yogurt.) When I wake up in the morning, I’m already tired. Asking me to bother with things like eyeliner and mascara after a shower would likely get you a sarcasm-laced laugh and a close-up look at my middle finger. (Not that anyone’s asking that of me. I’m just sayin’.)

I also have statistical evidence of my rapid decline in energy. I got a Fitbit at the beginning of the year and had fun logging more than 10,000+ steps a day. Now, if I log 5,000 steps in a single day (that’s my adjusted goal) it’s bittersweet. My Fitbit shakes and says “You did it!” but in my mind I know I’m already paying for it for it. Lately, on a typical day I get between 1,500 and 3,000 steps.

“Do you excercise?” my rheumatologist asked me Wednesday.

“No. I used to walk every day, but not now.” When I see people jogging in the park or see an advertisement for the local recreation center, I just get depressed.

And I guess that brings me full circle, doesn’t it?

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What Caused My Fibromyalgia?

FIBROMYALGIAFair warning: I might be writing about fibromyalgia frequently as I process, gripe, and try to track my progress (or lack thereof, but I’m actually pretty hopeful) with the “chronic health problem.”

So what causes fibromyalgia? The official answer—right now at least—is that no one really knows. But there are doctors and researchers interested in finding answers. According to the American College of Rheumatology:

The causes of fibromyalgia are unclear. They may be different in different people. Fibromyalgia may run in families. There likely are certain genes that can make people more prone to getting fibromyalgia and the other health problems that can occur with it. Genes alone, though, do not cause fibromyalgia.

No one in my family has ever been diagnosed with fibromyalgia, but that’s not the same as having a family history that’s completely clear of fibromyalgia. The disease itself has a pretty short history, and it is sometimes still pooh-poohed by people who don’t understand it. And because it’s more prevalent in women, I’m inclined to believe doctors were horribly dismissive of FM-related complaints in the not-too-distant past.

Hell, in my own family there’s at least one story of a woman being unjustifiably committed to a mental institution by her husband. Who knows what went undiagnosed when women weren’t so much people as they were worrywarts, hypochondriacs, and bored, lazy housewives?

So, there may be some genetic link for me that I don’t know about. I can’t really say any more about it than that.

But I’m still interested in speculating on the possible triggers. After all, I haven’t always felt this way. I had 33 pretty damn healthy years before the sky began to fall. Again, quoting the American College of Rheumatology:

There is most often some triggering factor that sets off fibromyalgia. It may be spine problems, arthritis, injury, or other type of physical stress. Emotional stress also may trigger this illness. The result is a change in the way the body “talks” with the spinal cord and brain. Levels of brain chemicals and proteins may change. For the person with fibromyalgia, it is as though the “volume control” is turned up too high in the brain’s pain processing centers.

Injury & Physical Stress

As I mentioned in my post about the diagnosis, I fell on the ice last winter. On February 14, 2014, I hit my head hard enough to briefly lose consciousness. It also knocked the wind out of me. I played it tough for a day or two, but finally went to the doctor when the headache wouldn’t subside and I was willing to admit that something very serious had just happened to me.

I went on cyclobenzaprine (a muscle relaxer my doc prescribed for wicked muscle pain and tension in my head and shoulders) but stopped taking it well before the Rx ran out because it seemed like it was all side effects, no benefits. I have never really felt normal since this injury. Maybe this was my trigger?

Then there was that whole gallbladder thing. The attacks, which started in November 2013 and culminated in the removal of my gallbladder in April 2014, certainly qualified as physical stress. I was given narcotic pain meds post surgery but was quite torn about taking them.

On the one hand the surgical pain was pretty severe, and the pills knocked me out for an hour or so each time I took one, giving me time to rest. On the other hand, they wore off quickly after, making me feel worse in a lot of ways. In the ACR literature, I read that doctors do not suggest using opioid narcotics for fibromyalgia pain because they aren’t much benefit. In fact, they can increase sensitivity and make pain persist.

So I wonder, did taking that shit mess up my brain chemistry? Or—and this seems more likely to me—did I already have fibromyalgia and that’s why I found the Vicodin intolerable? Did taking those pills actually exacerbate my pain?

Emotional Stress

Also mentioned in my last post, the last year has been difficult. No need in rehashing all that here, but if one day someone said to me that death, debt, and upheaval are triggers for fibromyalgia, I’d be inclined to believe it.

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It’s not just in my head, it’s flippin’ everywhere.

fibromyalgia-pain-mapI was diagnosed with fibromyalgia today.

But let me back up. My physical health has been on the decline for a little over a year, though I attributed symptoms of anxiety, depression, fatigue, and all-over pain to “just being a little stressed.”

After all, I’ve had good reason to be a little stressed for the past 14 months or so. Last summer I lost my father-in-law and my bestest dog just weeks before I took a new job and Dan and I moved to Illinois. Financial issues have been looming over us for as long as we’ve been here. (I may have put all of Taubensee’s vet expenses on a credit card and then suddenly and unexpectedly found myself paying rent in Illinois and a mortgage in Indiana.) And then there have been all the little incidental things that pile up: terrifying gallstone attacks and an ER bill that was entirely my responsibility because my new insurance required a 90-day waiting period, a leak at the condo that refused to be found, a fall on the ice, and I don’t care to remember what else.

The stress hasn’t been insurmountable. (Hello! I’m here!) But it has been very, very real. No wonder I’ve been a little down, right? No wonder I cried for the nurse practitioner last week. (After she referred me to a rheumatologist, I got weepy in the exam room. “I’m not even sad at the moment,” I told her. “I’m just so incredibly exhausted.”)

I put up with the following symptoms for about five months, thinking they were situational and hoping they would go away. Looking back, most of these have been bothering me for longer than five months, but they were overshadowed by other, more pressing problems.


  • Pain everywhere, but especially my neck, shoulders, back and legs
  • Constant fatigue despite sleeping 9-10 hours every night
  • Trouble falling asleep and staying asleep
  • Weak muscles that made it impossible to hold the hair dryer above my head for more than a minute or walk a block without needing to rest every 5 minutes
  • Constant headaches and occasional migraines
  • Recurrent heartburn
  • Jaw clicking (TMJ, apparently)
  • Intense nerve pain in my legs that made shaving feel like I’d swapped a razor for 24-grit sandpaper
  • Anxiety and depression

Thinking these things would go away if I could just recover from surgery, lose a few pounds, and get some financial relief, I put off seeing the doctor until I had trouble taking even a few hundred steps. That scared me. My primary doctor checked my vitamin D at that time and found it was low. It seemed like a reasonable explanation for the symptoms.

But after getting lots of sun, taking a supplement, and boosting my D level to normal a few months later, I was getting worse instead of better. Vitamin D was clearly not the only thing going on.

Then, while my parents were in town for a visit a couple weekends ago, we walked to Subway for dinner one evening. I hobbled all the way back to our apartment, holding onto Dan’s arm so I could stay upright. When we got back my mother said, “I’m worried about you, Emily.”

I called for a doctor’s appointment the next day. My primary doc didn’t have an opening, but I could see the nurse practitioner if I wanted.

I wanted.

The NP listened to me and wrote down some stuff, then apologetically told me she was going to run me through a battery of tests and refer me to a rheumatologist. She suspected fibromyalgia, but couldn’tmake a diagnosis herself and knew that lots of other things needed to be ruled out first. As suspected, all the tests came back normal or negative. The rheumatologist’s office called to schedule an appointment.

After poring over my list of symptoms, the rheumy looked up at me and said, “You’ve shaded almost your entire body, front and back.” (When you go to the doctor for pain, you might be asked to shade a pain map, like the one pictured in this post. The shaded parts on the drawing indicate where you feel pain.) He asked me a few more questions, then started poking various points on my body. The points at my neck, shoulders, chest, back, and hips were incredibly sore. At one point my knees buckled from the pain. I had no idea the pain was this intense for a couple of reasons. First, because I don’t go around jamming my bony fingers into random joints and soft tissue. And second, because the pain had been going on so long I was starting to accept it as normal.

Doc told me to put my shoes and socks back on. “Have you ever heard of fibromyalgia?” he asked. I told him I had. He gave me a brochure, stepped out of the room, and said he would be back in a few minutes to discuss a treatment plan.

I start on Cymbalta just as soon as my insurance company approves it. (Thanks, Health Alliance! I don’t want to put you out or anything. I’d be glad to put off getting treatment for a few more days.)

Of course, my diagnosis is not quite so simple, and I’m not done with the blood tests. Something in my long list of complaints concerned my doctor. Some symptoms weren’t part of fibromyalgia, and seemed to be immunological. Given that I have a history of thyroid dysfunction, he ordered more blood work.

“Whatever, you want!” I replied. “My deductible resets in January. Run. All. The. Tests.”

I go back in three weeks for a follow-up, and hopefully at that time I will have been on the Cymbalta long enough to start getting some relief.

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Friday Five: September 12, 2014

Friday Five

1. I lost weight. Neener. Neener.

I lost 5.5 pounds this week with Weight Watchers. When my mom told me a couple of weeks ago that she swore her vitamin D supplement was making her gain weight, a light bulb went off for me. I stopped taking mine and BAM! That reminds me, I need to go back to the doctor soon and have my D levels checked.

2. I’m ready for pumpkin-flavored everything.

It’s flipping cold here in Champaign. With things gray, damp, and temperatures hovering in the mid-50s today, I mentioned to Dan that I’m looking forward to turning the heat on soon. Have you hugged a radiator lately?

3. Don’t make me ask again.

I’m really starting to resent the fact that I have to use Twitter for customer service these days. Case in point: I sent a customer service email to Julep three weeks ago and immediately received a canned we’ll-get-back-to-you-in-3-to-4-business-days response. When no one replied 21 days later, I tried pinging the ticket again, only to receive the same canned response. That, of course, made me angry. So I took to Twitter.

The problem was resolved in minutes, but I feel like I’m always airing my gripes there to get attention because I’m being ignored when I attempt to use the “proper” channels. Grr!

4. Dan continues to crack my shit up.

(Shared this on Facebook already, so forgive me if this isn’t news.) Most women my age are writing about the adorably cute, funny things their children are doing. And here I am writing about my husband, who sends me random text messages while I’m in meetings so I have to explain what’s so funny.


5. Watch out for Ghandi, though. He’s such a jerk.

Dan got the Xbox 360 game Civilization Revolution months ago when it was a free download for his Live account. I’m so hooked. And, since I’m a special kind of pedant, I insist on winning all four victories (economic, cultural, domination, and technology) for every civilization in the game. There are 16. I only need 55 more victories to collect them all!

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Clutter Brain

I can’t brain when there’s clutter, and for this I blame my mother. More specifically, I blame the genes she passed on to me.

She has always kept a spotless, well-organized house. As a teen, I resented that my room was held to her impossible standards. As an adult, I wish I could channel just five percent of her inner clean freak. But I’m frequently distracted by life, multiple jobs, and some minor health issues that make cleaning and organizing the absolute last thing on the planet I want to do when I get home from work.

For me, chaos present in my physical surroundings equals chaos in my brain and vice versa , and I have a very hard time getting people to understand this about me. I hate the presence of clutter, but if something is amiss or disorganized in my life, I am simultaneously unable to do anything about it. It leads to a sort of depression, and I can spend a lot of my time in a pretty negative headspace if I don’t have some clean, organized, everything-in-its-place visual to help me focus.

So for the past year, with two homes in two states, I’ve been a total stress ball. However, something happened recently that freed up some real estate in my brain: we moved everything out of the condo. Despite the fact that we were rarely there, I knew that the garage was stacked with unsorted boxes. And that was enough to completely immobilize me at the apartment too. I couldn’t fix anything at the apartment. I couldn’t redecorate it or organize it in my mind or even develop a plan for “one day,” because I was completely without zen. But now the condo is finally empty, and the second it happened, there was an almost audible click in my brain.

We spent this weekend putting together an entertainment center and a bookcase that we ordered from Amazon. One of the biggest problems we’ve had in moving from a 2,000+ sq. ft. condo to a 500 sq. ft. apartment, is that all of our furniture was too damn big. These things actually fit our space. Yay!

They’re not special by any means, but I love them. And I’m starting to (finally!) love this little apartment. Because slowly but surely we’re turning it into something that works for us. Here’s a before and after of our little living room:

photo 1

photo 2

After we got it set up, Dan stared at the spot between the entertainment center and the bookcase. He stood in it and said to me, “We need something right here.”

“No!” I cried in terror. “Please! There has to be white space.”

Dude about gave me a heart attack.

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