This is my fibromyalgia. There are many like it, but this one is mine.
Fibromyalgia is typically defined as “a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.” I have found this definition particularly useless when trying to explain my life to friends and family, so this is my attempt to compile an exhaustive list of what my life is like with fibro*.
I was diagnosed by a rheumatologist** about five months after my first complaints of muscle weakness and generalized, on-going pain. On a questionnaire, I answered questions about my sleep. On the same form, I was asked to shade in the parts on the human body that hurt.
“I see you shaded in your entire body, front and back,” the doctor said.
And then he pressed on seemingly random areas of my body. The pain was so intense my knees buckled and I cried out in the exam room. That was the day I learned about trigger points—the day I realized I could actually hurt worse. The day someone induced my first honest-to-god fibromyalgia flare up.
Limited range of motion (particularly in my neck and shoulders)
Gait problems
Falling
Widespread nerve pain
Joint pain
Swelling in hands and feet
Burning sensations in hands, feet, and legs
Itching sensations
Cold and numb sensations on face and nose
IBS-D
IBS-C
Migraines
Chronic headaches
Vitamin D deficiency
Malnutrition
Dry mouth
Dry eyes
Abnormal breathing (catching my breath with no apparent cause)
Hiccups after eating or bending over
High blood pressure that fluctuates with pain levels
Hypersensitivity to light, sound, smells, touch, tastes
Waking ranndomly to pounding heart, increased respiration (like my fight-or-flight kicked into overdrive for no other reason than it wanted to)
GERD
Fatigue
Weight gain
Nausea
TMJ
Anxiety
Low body temperature (usually around 97, at 99 I feel feverish)
Sensitivity to medications
Reduced (non-existent, if I’m honest) exercise tolerance
Brain fog (crappy short-term memory, inability to recall words, inability to multi-task without getting completely derailed)
Temperature sensitivity (both cold and hot)
Some of these things are constant, and some of them come and go. Obviously some have a greater impact on my disability than others.
I’m probably leaving stuff out because I can’t brain.
Some of these are mitigated by drugs (the IBS-D, for example). The only thing we have been able to stop long-term so far is the IBS-D. God, that’s depressing.
Anyway, I think Dr. Ginerva Liptan describes the mechanism of fibromyalgia pretty well in her book, The Fibro Manual.
Got questions? Ask away.
*Not everyone with a fibromyalgia diagnosis experiences the same things. In fact, though there are many similarities among patients, I’d say no two cases are exactly alike.
**As I’ve written in prior posts, my relationship with the acceptance of this diagnosis is best described as on-again, off-again.
I don’t know if you guys noticed, but I didn’t publish anything here yesterday. That’s because it was a hard day.
I had three things on my to-do list again: complete my absentee ballot, get outside and walk in the backyard, and trim my nails. (Is it absurd that I have to make a list for such mundane things? Absolutely. Is it necessary? Yes.)
For every simple thing I got done, the universe rewarded me with unwarranted complications. First the water company called me to tell me that if I didn’t pay up they’d be disconnecting our service. Then my feelings were hurt by something Dan said. And finally the plumbing backed up while I was taking my shower.
***
About that first complication—somehow I missed paying the last two water bills.
“Hi, I had a message to call you guys. I’m not sure what it’s about.”
“Let me just pull up your account information. One moment.” Dan and I were listening to the Illinois American Water customer service rep on speaker phone. “It looks like your account is past due. We sent out a disconnect notice in the mail.”
“Huh,” I said. “Well, I can pay what we owe, but I haven’t seen the letter.”
“Oh, well, yeah… It was sent out yesterday, so you might not have it yet. Sometimes we call before it gets there.” I rolled my eyes and made a slightly obscene jerking motion as she backtracked and apologized. Dan laughed quietly.
We settled up for $153.33, and I hung up the phone.
***
Now, money is tight for us, but we can still pay our water bill. I am not yet to the point where I have to decide which utility I’m going to pay this month in order to keep someone from disconnecting us.
“I think I’m losing my mind,” I told Dan after the call was finished. “I don’t know how I forgot to pay them. Twice.”
Also, a few days ago, I accidentally paid $75.00 on my zero-balance bank credit card when I meant to transfer the money from a reserve account to my checking account.
Dan tried to help. “What can I do?” he asked.
“Short of taking over all the money stuff? I really don’t know.”
“What about reminders, or some kind of checklist?” he suggested.
“Yeah, that’s already in place. Online billing. Paperless alerts. Email reminders. I think I’m just losing my mind.” The brain fog—more specifically in my case fibro fog—is real and it’s kind of scary. It’s the reason why I haven’t driven in over a year.
“We need to get you to eat a vegetable,” Dan said, unwittingly striking one of my dysfunctional nerves.
“This,” I said weakly gesturing at my pajama-covered body and walking cane, “was not caused by my diet, and it cannot be fixed by my diet.”
He assured me he didn’t mean it like that, and I believe he didn’t, but I was riled. “Well that’s how I took it! Think about it next time!”
***
One of many reasons chronic patients are upset by suggestions to eat right and exercise is that both imply we brought a health crisis on ourselves because we didn’t have the willpower to stop it.
Like that ice cream cone I ate on October 16, 2014 for dessert was the straw that broke the camel’s back.
If only I’d eaten a plate of broccoli for dessert instead.
Is everyone who eats “worse” than us sick? Is everyone who eats “better” than us healthy? Don’t fucking think so.
We don’t care that your Great Aunt Ginny cut out all wheat and feels like she’s 19 again. We are not your Great Aunt Ginny. And we resent that you think we haven’t already tried everything to make our illness go away.
Take me, for instance. I’ve tried every healing diet known to man in the last couple of years. Low FODMAP, gluten-free, no HFCS, green smoothies…yada, yada, yada.
Not only did all of them fail to heal me, most of them didn’t even alleviate a single symptom for longer than 7 to 10 days. Plus any strict adherence to a health-food-only diet stripped me of one of the few things I can still enjoy in this life—eating socially.
I might be able to shrug off these suggestions more easily if I could whip out a blood test or MRI result or something—anything—that validates my disability. But I am almost perfectly fine on paper. As a result I’m ridiculously touchy—whether someone outright accuses me of Sabotage by Diet™ or absentmindedly makes a suggestion founded on a similar premise.
***
“You realize we eat almost exactly the same things, right? I just pick mushrooms out of your homemade stroganoff and refuse to let you defile my serving of macaroni and cheese by mixing in peas.”
There’s no denying I’m pickier than Dan. On the surface, I can see how it might look like I’m averse to eating foods that are good for me. But on closer inspection, that’s not what’s going on.
I made him feel bad. He apologized, and not in the way six-year-old kids do when their parents make them. It was genuine, and I instantly forgave him (even if I did need a few minutes alone to chill out).
***
This morning when I woke up there was a carrot cake on the counter.
Every night for the last week I had mentioned how I really, really wanted carrot cake. We were waiting for the next paycheck to do any official grocery shopping, though.
Well, today was payday, and Dan went out to get groceries, and he put them all away before I even rolled out of bed this morning.
“You better eat your vegetables,” he winked.
***
One of my favorite internet memes is the one that reminds us to be kind to everyone we meet, because we have no idea what battle they might be facing. In the case of patients with chronic illnesses (and especially invisible chronic illnesses), I think it’s safe to assume they are fighting 9 or 10 battles at once—battles you don’t know anything about.
Not that being a patient with a chronic illness gets us off the hook for reciprocating kindness or forgiving people that hurt our feelings.
I guess what I’m trying to say is that there’s room for all of us to dole out a little more grace. And carrot cake.
