The Fox and the Rabbit: What Does Fibromyalgia Feel Like?

What does having Fibromyalgia feel like? I've read numerous descriptions and, although there are definite themes shared among us, every person's experience is unique. I tried to find a blog post that captured all of my particular symptoms with perfect eloquence. I couldn't. What I found is that, even though I think I'm suffering like a Christian martyr trudging up a slope strewn with shards of ice, rusty screw guns, and carnivorous sticky buns, there is always someone whose pain is worse. Sometimes much worse. That doesn't offer me much solace. It just makes me sad.

Haven't a clue what I'm talking about? Learn more about Fibromyalgia here or here.

But I do want to explain how Fibromyalgia makes me feel. It might help when a friend or loved one doesn't understand why I keep grimacing during, say, a board game. Maybe after reading this post they will say: "Ah! You feel as if someone has turned your sinews and muscles into sharp metal strands, and is now braiding them quite viciously," or "Well, NO one cares for nails made of hot gravel being pounded into their joints! I'd grimace, too. Carry on, it's your turn." Or even "Malevolent sticky bun latched on to your brainstem again, what? No wonder you're so sluggish and foggy-headed!"

Here's a simple experiment. It may seem unseemly and unpleasant. First clench one hand tight into a fist. Now choose a part of that fist and bite it, for as long as you can tolerate. Your curled fingers will do. Give it a fair amount of pressure. Give it five minutes, if you possibly can. Notice what happens.

The immediate "victim" of the bite, your clenched fist, will begin to protest. It's already remorselessly tight, and now something is biting it? Seriously?! Not good. But, there's more! Soon, your jaw may become tense and tight, even sore. The exertion of holding the fist, along with the bite, will begin to seem intolerable. All you have to do to release the pain is to open your mouth, open your hand. Why are you doing something so ridiculous as biting your fist, just because I suggested it? Please do not do this in public.

If you have Fibromyalgia, you probably know where I'm going with this analogy. If you know a loved one who has Fibromyalgia, you might have your whole fist stuffed in your cakehole at the moment, and are feeling surly, and I appreciate that.

Fibromyalgia feels as if your body is gnawing on itself, every minute of every day. (Even on the "good days," when it's just gnawing with less fervor. On the best days, it still nibbles, like an itch that can never be scratched or eliminated.) As I've suggested, your body itself is already intolerably "tight." It has become a fist that never opens. Then, you visit it with numerous indignities, and they are certainly not confined to the hand—you sink pain into the neck, into the knees, into the edge of the jaw itself. Note that I do not use the passive voice in the sentence above, because you sense that your own body is conducting this cruelty.

I am hideously aware of the pain in my own jaws and also of my victim's pain.
It's not cool.

You become intolerably aware of the pain. You are the jaws of the predator, and there is no pleasure in being the predator. You will never kill your victim. You are a fox worrying the rabbit to death, over and over and over. Unlike an actual fox, you feel the rabbit's pain. You aren't even hungry. You feel remorse for the rabbit. The rabbit and the fox, the jaws and the flesh and the pain and the grief, are bound together forever in a singular dance.

If you are still biting your fist, stop, you fool. You probably look like an idiot, with tears springing to your eyes on the Metro North. You probably look like a woman who wants to scream because she is so heartbreakingly frustrated and is biting her fist to prevent herself from doing so.

Thank you for trying, if you did, but no one should suffer for very long. Where does that leave me? Some mornings, when I wake up to another day of stiffness and aching and mind-numbing pain, the phrase "What did I do to deserve this?" sometimes springs into my head.  I really thought that today might be different. I limp my way down the stairs, leaning heavily on the banister. My entire frame feels off-balance and wobbly. Trembling hot shards of pain fire through my shoulders, knees, elbows. My upper back and neck burn as if I've been beaten heavily with a cudgel, scalded, racked, and seized. I think that maybe the nasty local gang, the "Sharpened Hot Sporks Laced-With-Acid Boys," took me down last night, unawares.

I had a haircut last Friday. My first in many weeks. A woman was washing my hair and massaging my head and I relaxed a little bit and had this random thought: "Hey, I wonder where I would get heroin in this town, if I truly wanted heroin? Because I heard it's a real suburban problem, but I'll bet it would take my pain away. For sure it would. But, goddamnit, it's heroin. I probably should never try heroin, right? I think barfing is involved. OK, forget it. How does one get one's hands on medicinal marijuana? Would I qualify? I don't want the kind of stuff that makes me mistake a can of Mandarin Oranges for a can of Marinara Sauce and serve a very wrong and disgusting meal. I just want the pain to go away."

Not very tasty atop pasta. Oops?

Then there is the horrible malaise and fatigue. Making even the simplest breakfast for my sons feels exhausting. Bending down to pick up a bowl from the cupboard, walking it to the breakfast table, removing a carton of milk from the fridge, returning to retrieve a spoon from the cutlery drawer, extracting a box of cereal from the cupboard, setting it on the table—a series of small steps that is, somehow, torture. Every move hurts, in varying degrees, and depending on the day.

My sons are perfectly capable of all these tasks, of course. But if I were to languidly dictate orders from my fainting chair, I fear I would become the cover girl for Bad Parenting magazine. As I write this, I realize that delegating every single task in the house would be the best thing for my sons. It wouldn't hurt them one single tiny bit, and they have energy to spare. It's just my guilt that keeps me on my feet, thinking "I should be a better parent. I should have more energy. I shouldn't hurt."

I have never been a person to collapse on the couch, except when I've come to the very end of my rope. I have to keep going all the time. I can't sit still. My mother, in her late 80s, is the very same way. She will insist on painfully ascending the stairs to the second floor just to ensure the pillows on the guest bed are fluffed, no matter how many protestations we utter. She will wander around endlessly, buffing the counters, long after she should be in bed. I've despaired of her perseverance, yet I am proud of it in a way I can't explain. Well, yes, I can. I explain it this way: We are not lazy people.

So I don't stop, ever. A day without exercise is wrong. My overactive mind will punish me for it. My body will feel restless and unfulfilled if I didn't swim or bike or walk or run, even if it is simultaneously crying out in agony. I can be utterly exhausted, defeated, and in agonizing pain—in a place where I have no business anywhere but in bed or on the couch—and I still insist on exercising, hauling firewood, dragging around set pieces for the middle-school musical, playing piano, toting groceries.

Being Strong and Tireless is part of who I am. A me that isn't "strong and tireless" isn't someone whom I would recognize or even care to know. I'm the person who can pick up the 80-lb canoe solo, if asked. I'm the mom who can swim a mile and then spend another hour playing "pull-up" with the kids (a vicious form of Sharks and Minnows in which you literally have to dive down deep to capture your minnow and drag him/her to the surface). Why, just two days ago I was hauling a huge and recalcitrant fake Christmas tree, part of the decor for the middle-school musical, out of the school foyer. The damned tree was collapsing on my head, barfing out ornaments and tinsel. I was sweating and grunting. A man paused and asked if I needed help. "Oh, no thank you, I got it," was all I said. Then I went and got another tree, and dragged that one out, too.

I felt good dragging those trees. I felt like the warrior I know myself to be. I didn't hurt a bit while I was dragging those trees. I would have dragged a thousand trees. I don't know if this is true of anyone else with Fibromyalgia, but sometimes the harder things are the easier things. They make you completely forget that you are all torn up inside, because, after all, every day and every moment you are all torn up inside. Lifting rocks and bricks and boards makes the "torn up inside" feeling make sense. Of course it should hurt to drag that heavy load. It would make any healthy person hurt. Therefore, I am healthy. Or just very stupid, because I probably pay for my exertions later. Plus, I won't take a moment to rest.

It's the little things that hurt, the small and ordinary offices of life. Putting away laundry is just dreadful, and that's probably true for people who don't have Fibromyalgia, too. When I hear "I need help turning on the water for my tub!" from up the stairs, my mind bends and wavers. It's a weary climb up one short flight, a cranking of handles. Why does something this small have to be so painful? When I pass the pile of papers and school photos that should be trimmed and filed and put away, I always think: "I'll do that tomorrow. I'm far too tired today."

It all feels rather hopeless, sometimes, because even watching television is painful. How could watching a television be painful? As I sit there, trying to focus on the plot and to lose myself in the story, I am bitterly aware of my muscles spasming, of my utter failure to relax, of the tight hold the invisible, gnawing thing has on my neck and shoulders. Sometimes I stretch, and my tight joints protest. At other times I try a little self-Reiki, palms to jean-clad thighs, and I wish the pain away.

I have been successful on a few occasions. Sometimes it recedes, and I am able to forget (for 1 minute, 2 minutes, 3 minutes?) who I am. This happened two days ago while I was drawing this grasshopper. I used the book Drawing on the Right Side of the Brain and I drew this grasshopper upside down, in an attempt to shut down my anxious time-clock left brain and activate my right brain.

My sketch of a grasshopper. It will probably be devoured by a hungry predator within minutes, its short and fleeting life meaning nothing. 

Guess what, little grasshopper? My pain went away, while I was drawing you. Now that I'm writing this, it's back in full force. It eats away at the base of my skull, and at my shoulder blades, and inside the architecture of my knees, and it burns along my back, and here I am staring at this grasshopper and I know that while I drew it the pain was still there, somewhere waiting on the sidelines. But it didn't matter. Because I wasn't trapped in my body. I was calculating the precise distance between wing and leg, and dreaming of hauling big loads.

I don't have any real wisdom to give. The only things I have ever figured out are to stay busy, to not be lazy, and to keep on, and on. Never give up. Keep doing. I'm still in pain. Sometimes it's bad. Some days, really bad. 

The fox is still dancing with the rabbit. The rabbit gives itself wholly, unwillingly—taut as a wire. The fox digs in with claws and teeth, but it has no love of the conquest. I watch their exertions with my clenched fist held between my teeth, praying for absolution. Praying that I can hold on long enough to be a proper poet for the fox, the rabbit, and the breaking day. Give me enough time. 

Fibromyalgia: This Is Who I Am

I hurt. I hurt like a bird brought down from flight, a tree limb weighted by ice, a shuddering bolt of metal in a groove. There were times I ran in the sun. I have swum across lakes. I have carried heavy loads. I will still do those things. I will. But I hurt, all over. Something with talons has me about the neck and digs in, and I strive every moment to escape. Signals fire down my limbs. Elbow, wrist, fingers, knees, ankles.

I’ve recently been diagnosed with Fibromyalgia, and I have the most profound relief. Honestly, I wish it had been something worse. Something that would make people really sit up and take notice! Because “Fibromyalgia” sounds sort of like “Oh, you have the Yuppie Flu” or “You have some chronically lazy and fake pain caused by your hatred of being a servile wench at the beck and call of the helpless multitudes” or “You wish to get out of folding the laundry again.”

Well, it’s real, and you can listen to people speak about it in the NY Times here.

And read about it here.

And here.

Fibromyalgia has the following symptoms, at least for me:

• Lots of fucking pain all over your body, most of the time except on those rare "gift" days.

• Crushing fatigue, on and off.

• Fuzzy-headed "fibro-fog:" A condition that makes you feel drunk, but not in a good way.

• A hyper-attuned startle reflex, such that a ringing phone or a sneaky kid with a water-bomb makes me have a small panic attack.

• An unsettling feeling of nerves "firing" in my body when they should not be. Like a series of small bombs going off: Plink! Plink! Plink! Every time they fire, I grow tense and exhausted.

Still, I wish I could have told people I had Lupus, or something like Granuloid MyoOptic Diffusion Carconosmia (doesn’t that sound scary?). My 16-year-old cousin died of Lupus! She really for real did. And that would mean I might die of it too, and people would feel really sorry for me and bring me pies and never once question the veracity of my pain.

I don’t have Lupus, so thinks the doctor. (Still waiting on the blood tests. I might have it, or worse.) And I don’t get any pie. I don't even care for pie! I hate pie. Don't bring me no stinking pies.

For months, years, I have asked doctors to tell me what’s wrong with me. They have all said I’m healthy as a horse.

“Your bloodwork is completely normal and there is nothing at all amiss. You should consult a psychiatrist, because you are clearly a nutter who is looking for attention and is making up a whole lot of fantasy badness in your head.”

“Your MRI shows nothing that would explain this pain. Everything is normal. Normal! I will send you to physical therapy, where they will charge you up the wing-wang to pull at some elastic bands and hoist wimpy 3-pound weights and do stretches. But your physical therapist will be exceedingly white-toothed and attractive, at least.”

“I’ll write you a prescription for Myclobenzaniadreapene. That will relieve some of the pain. Except you’ll be so sleepy you won’t be able to function. In any way. You will be comatose. And during your comatose-ness, you will actually still feel pain! Because the pill is actually just a placebo made of horseradish and marmot sweat, with a touch of sleeping powder as a glaze.”

Before I knew what this thing was, I complained to anyone in range, when I hoped to have a kind ear. My fingers turned cold and numb and white, when the temperature was a mild 62 degrees. I slapped at them and felt nothing at all. I cried, my cheek against the cold bathroom tile. My comb was filled with loose hair and I was as stiff as an 80-year-old, clenching tight upon the banister to get downstairs. Every morning is like that. I’m old before I’m young again.

I get really cold when no-one else in the room is cold. My teeth start chattering. I don't understand.

One friend said: “You're cold? Come on. Women are being enslaved in Syria. Hello, #FirstWorldProblems.”

I stopped complaining, for the most part. 

Well, no I didn't. But I tried hard. I tried to direct my complaints toward kind ears, such as those of my veterinarian friend, who, upon hearing some of my symptoms, suggested I see a rheumatologist. 

"My vet sent me," I told the woman who finally diagnosed me. My vet says she sees dogs gaze at her with the same kind of sad puppy-dog pain-filled eyes that I have. (She's one of the few whom I have allowed to see the full spectrum of unattractive misery.) 

I don't wish to complain, because it is utterly boring. But I want to explain away the grinding exhaustion that casts a dark shadow over my face during a game of Uno. I feel I should account for the fact that I keep grimacing, that I suddenly have to lie down. The raptor of pain has me in its grip. I’m not your mother anymore. I am a thing. I am a thing of want and hope. 

“What’s wrong, Mommy?”

“I’m in a little bit of pain, honey.”

“Are you sick?”

“No, I’m fine. I’m not sick. I would like a healing hug.”

And so they give them, believing in their small powers to cure. And every now and then I feel a frisson of energy awaken me, and my back sings, and my heart thrums, and my very hair starts to vibrate, and I think: “My son is a natural healer!” 

When the hurt settles again, I decide: “That was some powerful mojo. But it didn’t last. But it was for real while it did.”

(I really do believe in things like Reiki. In my next life, I will be a Reiki practitioner. I will help people, and heal them. And I do believe that my sons’ healing energy has given me something. Maybe I am a total whacknut, but littlest son’s last “Ultimate Special Hug With Kiss Attached And Some Chi” packed a big whammy. I'm not joking.)

My doctor gave me a pill. I am waiting for it to work. I don't write anymore. I don't do much of anything anymore, except wait for that pill to work.

It hurts while I am watching a movie. I try to pay attention to the plot, but really I am wondering: “When does the pain end? Will this go on forever and ever?” It hurts while I am watching my eldest son’s basketball game, during which he moves so gracefully, so swiftly, that, for a brief moment, it makes my heart swell and ache beyond comprehension. How could he be more beautiful? He's suddenly so tall, so heart-rendingly tall. And my second son spins through the living room and lands at the piano bench and bangs out a perfect rendition of the Star Wars theme from memory and then spins away, pain free, light as a breeze. And youngest son flails himself without fear from ottoman to couch in gap-toothed ninja derring-do, and I watch it all and feel love and joy and all along the way I can’t help but think I’m in pain I’m in pain I’m in pain.

I wish I could stop thinking about it for just one hour. Five minutes. And I feel incredibly guilty, because here they all pass before my eyes and what am I thinking about? Me. My own pain. Circus caravans and dancing yetis and talking penguins in bras could pass before my door and I would still be crouched in some small corner of my brain, cognizant of only one thing. Pain. Boring selfish whiny stupid ever-present pain eating my days alive.

What a bore. I have become a fucking selfish bore.

I wish I could stop feeling it.

But sometimes I make myself forget, actually. I am learning to play “Linus and Lucy” on the piano. When I sit down at the piano I become not myself, for some pure minutes, and although I feel pain tracing its insidious way down my right hand as I hit the chords, I don’t care.

Last winter, I decided I would learn how to skate, because it was the scariest thing I could imagine. I could twist an ankle! I might fall and crush my coccyx! Or I might fall and a skater would skate right over my hand and slice off all my digits! (OK, you have now probably realized that I suffer from anxiety, too.) I hurt all the time while I was skating, but I didn’t care. I was learning how to fly. One day, while I was clinging hopelessly to the side wall and scratching along, I heard a girl say to her friend, “You’ll never learn to skate if you always hold onto the wall.”

On that day I resolved to let go of the wall, and I was freed.

This winter I went sledding. I learned how to serve in paddle tennis, such that the ball goes in 95% of the time as opposed to 5% of the time. I practiced in my driveway once, against the garage door. I hurt the whole time I was doing it, but I didn’t care. I played one-on-one basketball with my son in the same driveway, and I was terrible­—an embarrassment! He took me down. He was “baller,” in tween lingo. I was a rickety, rusted thing. But I tried, and played, and that is what I care to count. I gave him a run for his money, because I never go halfway.

Every moment hurts. But every moment matters, even when I hurt. Right now, as I type, my neck and back and arms and fingers and knees are a blurred presence of pain. I want so much to walk to the piano and just play, free and clear. I composed songs; I want to finish them. I want to sing. I want to finish that beautiful novel, but after being at a computer all day, hunched and intent, my body betrays me: No more no more no more.

Even writing this hurts. Typing even hurts. But it was worth it, because maybe someone like me will one day read it and think: I am not alone.

We are not accidents. 

I Drink Because of You

So I went to my doctor this morning and she didn't respond to my ceaseless whining about my back pain and misery, so when she left the room I slipped on my "Give me Painkillers, Now!" T-Shirt and she ignored that, too. I have never even had painkillers except for wisdom tooth removal, an occasional ear infection, and giving birth ("The baby is crowning? Wow, who knew!") but I just know I would like them very much and would like to become heavily addicted to them. I would make the ideal painkiller addict and I would like a stab at it before I die. But no one will give a chance to descend into addiction, battle it, and emerge a cleansed person with a story to tell. It's so unfair.

I am sure that happiness is an absence, not an addition.

But the addition of painkillers would be the perfect equation, yes?

Instead, the doctor said that if I tried to lead a healthier lifestyle I would probably feel a lot better very quickly. I talked a lot about our organic farm share and she seemed impressed. I waited for the painkillers prescription after that, but in vain. Did she realize how MUCH salad I eat? I have flavonoids and antioxidents seeping out my pores! Healthier lifestyle? I asked "Is it OK for me to drink?" She said, "Oh goodness, a glass of wine a night is absolutely fine! Don't worry."

Hmm.

Here are 10 reasons why drinking is so spectacular:

1. It drowns out your caterwauling, you mewling creatures.
2. It makes places like Juniors (North Avenue, New Rochelle) seem dreamy and avant-garde, even while a drunk is gnawing on your ankle and vomiting into your purse.
3. Everyone's prettier.
4. I can sing.
5. You have the right to hang a cocktail flag from your porch. Ours has a depiction of a martini with an olive. It's rather...unique in our neighborhood.
6. Pain go away!
7. It works equally well for celebration and a miserable, naval-gazing stupor.
8. It makes heatlh freaks and yoga addicts look boring.
9. Personality...enhanced!
10. It blocks out the memories of YOU, my Evil Midget Boss!

Chapter Two of the latter story to arrive suddenly, when you least expect it. Better check the blog.

I could do ten more. Send me yours.