My Pain Has a Name… Fibromyalgia

About 3% of the U.S. population has it and approximately 83,000 are women. Although there’s lots of guessing by the medical community, there’s no known cause, no known cure, and most people consider it a “catch-all” diagnosis. Even some doctors believe it’s a psychological condition. Hypochondria, anyone? Well, it isn’t in my head.

Someone Set My Bones On Fire

About three years ago now, give or take a few months, I was standing in my parents’ kitchen, laughing and joking with them like any other night. As I went to take a step toward the table, my leg buckled underneath me. I hit the floor on my right side, confused by how I’d gotten there.

I started to roll up on my hands and knees to stand up when someone reached inside me and set my bones on fire. For what felt like hours, I could do nothing but lay on the kitchen floor, screaming in the sudden, inexplicable pain that filled my body. In actuality, it only lasted five or ten minutes, but it seemed to go on forever.

When it was over, I was exhausted and everything had a dull ache. I crawled into the living room, curled up on the couch and went to sleep. Waking up a few hours later, I felt a little stiff, but none the worse for wear. Odd, considering how horrible I had felt just a little while before.

Two weeks later, it happened again in my bedroom and a month after that, and a few weeks after that. For six months, I’d have moments of screaming pain that I couldn’t reach. Nothing I took helped. Nothing I did helped. I couldn’t massage the pain away or touch it. I couldn’t feed it, stretch it or work it out. All I could do was hurt.

Since then the pain has been constant. On a scale of one to ten, I’m at a three from the time I wake up to the time I go to sleep – if I go to sleep. Often, the pain level goes up to a five and decides to stay around for a while. Sometimes, I’m at an 8 to 10, which I can imagine would be the equivalent of being burned alive from the inside out.

Diagnosis? The Chronic Pain of Fibromyalgia

I’ve been diagnosed with fibromyalgia. What a name, huh? It doesn’t sound bad, but it’s like pronouncing a curse. Chronic (lasting for a long time, usually for life, worsening slowly) pain.

It’s a syndrome, not a symptom or disease. A lot of people and even some doctors believe it’s B.S, and you can’t “pill” it away. Advil, aspirin and Tylenol – even if your stomach and liver could handle the amounts needed – generally don’t work. Codeine, oxycodone and other pain relievers don’t do anymore than put the pain somewhere else for a minute, along with blurring your brain so badly you can’t do much of anything anyway.

It sounds stupid to me when you say it. “You’ll hurt all the time.” Yeah, right. Okay. Ouch.

But the word “pain” doesn’t begin to describe what it really feels like when someone stabs an ice pick into your shoulder for no reason, or when something grabs the back of your tongue and your throat and tries to yank them out. Or when a hot wire is wrapped around the base of your skull and pulled tight, or when it feels like your hip has been yanked out of its socket, dipped in ice and then rudely shoved back where it belongs. Or when every waking moment of the day hurts and just shifting your body sets off waves of nauseating agony.

I get up in the morning and it feels like my muscles have frozen. The days I can move like the 35-year-old I am are good days. My arms, back and shoulders constantly ache – a dull, deep, flu-like feeling that won’t go away no matter how much I rub, stretch, poke and prod.

But that’s all okay. It’s all just life. I can handle the pain. I can handle feeling tired all the time. I’m alright knowing that the only way I’m going to accomplish anything physical, including something as simple as walking up and down my street, is by pushing passed the pain and just… living with it. You either hurt and move or hurt and sit until you die.

I’m okay with that.

But Then There’s the Sharing

Fibromyalgia – Not your average syndrome

I’m 35. I have three children living with me between the ages of 6 and 15. My parents are in their late 60’s, early 70’s. My sister is 36 and mentally retarded. And at various points over the past three years, they’ve been gathered around trying to take care of me while I’m on the floor sobbing in pain.

My 15 year old has had to cut my food for me because my arms hurt so much I couldn’t push the knife down. My 12 year old has had to carry the laundry for me. He’s held me up on at least three occasions to keep me from falling when my hips seized up. My 6 year old has lain on the floor with me and cried while she patted my face.

My mother has had to put my hair up. My dad has rubbed my shoulders, even with a wrist swollen from arthritis, because they’d knotted up and wouldn’t relax. My sister has cried for me and patted my back. My best friend has rocked me and held me while I sobbed when there was nothing else that could be done.

Yes. The worst part of fibromyalgia is the sharing.

The people that I love… well, they love me, too. –And while I’m glad not to have to go through it alone, I despise that they have to see it.

Part of it is selfish and self-centered. I hate them seeing me so weak and vulnerable. I’m the caretaker. I’m the one that’s supposed to be taking care of my children and parents – not the other way around. When I’m forced to lean on someone, the thoughts in my head are full of disparaging, hateful remarks that I can’t seem to stop. “Weak. Stupid. Crybaby. Get up and quit whining. Get over it.”

Part of it is because of my loved ones. They love me. To see me the way it gets sometimes… well, it hurts them. Worse, they can’t do anything about it. I live in a family of “fixers” and they can’t “fix” it. Most of the time all they can do is watch with sad, frustrated eyes – and I hate it.

Lessons Being Learned

I’m desperately trying to learn lessons from all this. After all, if you don’t learn anything from an experience, it’s pretty much a waste, isn’t it? Don’t answer; it’s a rhetorical question.

So then, what lessons am I learning from this? Well, a few of them, actually:

It’s so much harder to be served than to serve – When I was younger, I thought being waited on would be fun. I’d be like a princess! The reality sucks. At least for me, it is so incredibly hard to admit that I need help. When I had to ask my son to cut my food, I couldn’t stop from crying in humiliation.

Rest assured, I remember that feeling any time I ask someone if they need help. I try to ask in ways that won’t increase that feeling of humiliation. I’d rather make myself look like a fool than accidentally make someone else feel the way I have.

You can live through a lot – I remember times in my life when I thought, “I can’t go on. This is too much to handle!” While it might have felt like it at the time, I look back now at those cake walks and just sigh at my younger self. Even if the choice comes down to “hurt and do or give up”, it’s still a choice. No matter how inane it sounds, the truth is that life isn’t over until it’s over. Until then, you really can live through anything that’s happening.

Pride isn’t very useful – My loved ones sometimes treat me like a fragile piece of glass.Me. I worked for a tree service for three years, tossing 300-pound logs around. I helped my dad build a concrete wall and hauled 80-pound bags of concrete. I’ve picked my sister up and carried her on countless occasions. I’m the one my mom nicknamed “Man Mountain” because I could manhandle anything that got in my way.

Now… I’m just a girl. A girl who can’t stand, sit, walk or move without gasping sometimes. A girl who has to lean on others, sometimes to a large degree, when I’m used to being the one leaned on. It’s unpleasant.

Yet, all those things I just spouted are all things I’ve taken a lot of pride in because they aren’t things women normally do. I liked the fact that I worked the hard jobs and could do those things. However, those very things are probably part of the reason I’m in as much pain as I am now. I’ve used my body as a workhorse, and stressed it passed what it was built for. So much for pride.

Love is sharing the positive and the negative – It’s recently been pointed out to me that love doesn’t stop when the good times do, and withdrawing can hurt my loved ones. I have a tendency to run and hide like a wounded animal, because I don’t want my family to see my tears. I don’t want them to worry. Plain and simple, I don’t want to share my pain with them. Unfortunately, that withdrawing can often be taking as a “slap” so-to-speak.

When I think about it the other way around, it makes sense. When someone I love is hurting, I want to help, even if helping means nothing more than being there – a physical lump on a log, taking up space for as long as they need me. I fulfill my purpose, as their loved one, in that way. By pulling away from them when I’m in pain, I’m denying their own fulfillment, and own opportunities to express and share love.

Long story short, we share the laughter and the pain because sharing is love. Withdrawing is nothing more than selfishness, no matter what it feels like at the moment.

Apologies to a Dear Friend

I have a friend who’s had fibromyalgia since she was 24. I’ve written about her on this blog once or twice. She’s been an example of what I want to be like since I met her. – And I owe this wonderful woman an apology.

You see, I’d watch her and know she was in pain, and I’d marvel to see how she handled her kids, her husband, her house and her life. But she made it look easy. So easy, in fact, that I never quite understood what it was like.

My dear friend – and you know who you are – you are an inspiration in my life, and even more so now. Pain – what a thing to have in common, huh? I understood as much as possible at the time, I think, but I know now that it was a far cry from the reality of things. For any callousness or lack of care I may have shown you on bad days, I deeply apologize.

To those of you out there with fibromyalgia who may be reading this…

You might have been told it was all in your head. You may be suffering from depression because of the constant pain – it’s hard to keep your head up. You may have problems sleeping, or desperately want to move when it hurts so much to do so. You may hate the look in your loved ones’ eyes on bad days, or the way they treat you as if you’ll break at any moment.

Realize you aren’t alone and it isn’t going to go away any time soon. Make up your mind that you aren’t going to quit. Pray. Move, even when it hurts so much you want to scream. Follow Phillipians 4:13:

“… whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.” (English Standard Version, 2001)

Finally, and hardest of all, let your loved ones be there for you. It is humbling. It is hard. But, it is love.

Footsteps in the Sand

One night a man had a dream.
He dreamed he was walking along
the beach with God.
Across the dark sky flashed scenes from his life.
For each scene, he noticed
two sets of footprints in the sand,
one belonging to him and the other to God.

When the last scene of his life flashed before him,
he looked back at the footprints in the sand.
He noticed that many times along the path of his life
there was only one set of footprints.
He also noticed that it happened at the
very lowest and saddest times in his life.
This bothered him and he questioned God about it.

“God, you said that once I decided to follow you,
you’d walk with me all the way.
But I have noticed that during the most
troublesome times in my life there is
only one set of footprints.
I don’t understand why when I needed you most
you would leave me.”

God replied “My precious, precious child,
I love you and would never leave you.
During your times of trial and suffereing,
when you see only one set of footprints in the sand,
it was then that I carried you.”

5 thoughts on “My Pain Has a Name… Fibromyalgia

  1. Jahnelle,

    This moved me to tears. I haven’t suffered to the degree you have, being diagnosed with the “para” (upper body) form of this horrific symptom, but I have suffered much of what you’ve described in walking/typing at my computer/trying to sleep through/functioning in chronic, searing pain. I’m lucky to have a doctor who understands that it’s not “in my head.” Wish others were as enlightened.

    Like you, I was a strong & athletic woman who worked her body hard in various labor jobs to get thru and get by – and let’s not forget, bartending & waitressing are laborious 😉 But I’ve been a greenskeeper and landscape gopher too. Wearing a gas-driven weed-whacker on your back for 8 hours’ at a time is not for the fragile.

    I’m not sure if there is a proven connection between being a work horse and this…affliction of ours…Maybe once fibromyalgia is recognized as the real physical pain that it is in a serious way (e.g., medical research and enlightenment), there may come some answers.

    Until then, I too say the daily meditation of serenity and acceptance. What else is there to do? As you said, fight or lay down & give up. Either way, you’re in some hellish pain.

    • Laura, thank you for reading and especially for your comment. I’m glad to know you have an understanding, knowledgeable doctor. I haven’t been able to come across anything to prove being a workhorse is a cause, but when the little they do know says “trauma to the body” may be a factor, well… Who would argue that labor jobs don’t have an amount of wear and tear on the body, compounded by the years?

      Well, here’s to medical research and enlightenment, my friend, and many nights of restful sleep when you can get them!

  2. I am enlightened and empowered by this post, and others like it. But, I’m also at the point of tears. Today is a bad, bad pain day and moving is excruciating, breathing hurts, typing is slow going. I was diagnosed with fibro in September of last year, after a four eye surgeries in 6 months.

    I am very intrigued by the thought that people who “used and abused” their bodies in the past are more likely to develop fibromyalgia. I was the same way – from high school well into my 30’s. Athletic, strong, and I overdid it on a regular basis. The pain after a weekend tournament was was a “good” pain – the sore muscles accompanied by the mental high from being able to do it. Now, I wonder – did I do this to myself? This question for me is not a depressing question, but a “why” question. I’ve held very stressful jobs, including being a 911 dispatcher. While I was working there full time plus, we built our house and I did a lot of work. (Laid the laminate flooring all by myself. Some days I got a few hours sleep, some no sleep at all.)

    I was proud of myself for doing things I probably shouldn’t have done, but did I push my body and mind too far? Interesting theory.

    • (((Hugs))) I hate to find another sufferer, knowing that there are plenty of us out there, and I’m sorry to hear today is a bad day. All I can say is, I hope it passes quickly for you and moves to a manageable level. Is there anything that helps you manage the pain? It’s only been recently that I could put a name to what was going on; much of what I know is due to research. I have yet to find anything that does much good.

      It’s not a depression question for me, either. I mean, I’ve done what I’ve done – nothing can change that. -But, ever since I was a child, “why” has nagged at me. Even now, when things happen I poke at them and try to dissect the reasons behind it all. It is, of course, just a theory, but reading Laura’s comments and now yours reinforces my curiosity.

      The question I have for you, though is… are you still overdoing it? Do you still push yourself too far on the days you feel good – or even on the days you don’t feel good? I know I do (and I know Laura probably does). I pushed myself to walk 2 miles last night because I keep reading that having muscle tone and not being overweight helps, but did I really have to keep walking once my nerves started stabbing me? Of course I did – because I set myself to walk at least 2 miles, and I’m going to walk those 2 miles no matter what. Is it a frame of mind that won’t let go? And I wonder if it doesn’t further contribute.

      Maybe, while I’m trying to do all this other non-medical stuff to help my body, I can work on trying to relax my mind and reduce the stress to a manageable level, but to do that, I have to quit overdoing it…

      Thank you for reading and commenting, Kim. Of all the things we could have in common, meet and talk about on here, I’m sorry it had to be this one.

  3. Pingback: Sorry For The Silence | Serenity's Musings

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