What Is Fibromyalgia Anyway?

As I was walking down the street yesterday I noticed I walk like a duck-billed platypus. Heels in with my toes splayed out. I tried to correct my gait and point my feet straight but felt like I was walking bowlegged. So I came home and watched TV last night standing behind the sofa with one leg folded over the top of it and the foot I was standing on pointed straight. Back and forth I switched legs, trying to pull my tight muscles into alignment until my husband told me to sit down because I was making him nervous, hovering over his shoulder and all that. But just that simple correction made my hips and low back felt like I was racked up on a medieval torture device designed to pop the bones from the joints. Okay maybe not that bad but the level of stress and tension and pain in the area ran very deep. 

There are many theories about what Fibromyalgia actually is. Many. At one time modern medicine believed it to be rheumatic in origin, which includes a large number of inflammatory conditions characterized by pain, range of motion limitation and degeneration of the musculoskeletal system. So they sent us to rheumatologists to unpuzzle our pain. But upon years of further research they found no inflammation or degeneration actually going on. Which earned patients diagnosed with Fibromyalgia a pretty shady reputation because, quite frankly, since they didn't understand our pain they didn't believe it either. Now they have settled on neurology. Central nervous system damage, elevated neurotransmitters, misfiring neurons, changes in the way the brain communicates with the spinal cord thus affecting many major systems in the body. This is the definition I have clung to for dear life, screaming to anyone who will listen to me this illness is as real as Christmas on December 25th. It has to be. For heaven sakes it disabled me and made me want to die!

But now I am beginning to think there is more going on. I am knee deep in the middle of a gigantous flare. Haven't had one this bad or this long in quite some time. It's a good refresher of the weird and strange symptoms this illness inflicts. I am swollen, stiff and sore. Feel like every cell in my body is expanded and pushing to burst out of my skin. I can barely move my body or twist around. And as mentioned before my musculoskeletal system is jacked up. Could all this be from a damaged central nervous system sending excessive pain signals to my brain? I read a study recently that hit Fibro from a deeper angle. It sought to understand a different cause of why the nerves are sending a message of pain to the brain in the first place. The doctor is testing the effects of an antihistamine in quieting immune cells called mast cells which communicate with peripheral nerve endings in an effort to quiet these amplified pain signals.* He may be on to something, time will tell. We patients are given nibbles of hope every so often. Someone discovers a virus or abnormal brain imaging results or even a way to test the blood they think can further diagnostics and treatment. We sit and wait, holding our breath and praying for an answer, a way to make this whole nightmare go away. But until that happens we have to learn how to live with it. So in an effort to quit walking like an egg-laying mammal I think I am going to get off the computer and go do some yoga. Something I know can help me today. 

Thanks for joining,

Leah

*Patient reports relief from fibromyalgia in IU School of Med study

I Have Let Myself Go

I gave my husband a new handy dandy techno-fab phone for his birthday last week he is quite enamored with. He was playing with the camera last night and took some pictures of me. Well when I saw them I started crying! I look simply awful. My face is as round as a basketball, puffy with the pallor and texture of unbaked pastry dough. My limp yellow hair just blends into the illusion, providing no contrast or definition whatsoever. I have enough bags packed and ready to go under my eyes for an ample trip around the globe. And my chin? Oh how I wish it stopped at double! Folks are so reassuring, promising me this is just what Prednisone does. They say it's water weight, chipmunk cheeks, you look fine, don't worry. But I am worried! Horrified, embarrassed and really mad too. I have only gained back the 10 lbs. I lost in the hospital at the end of July but my face looks like it did when I was 30 lbs. heavier on Lyrica. I can blame some of this on steroids but have to take responsibility for my part as well. I have been eating. A lot. My portions are big. I eat for pure enjoyment without a thought to calorie or consequence and I am practically visiting the frozen yogurt shop daily. Oh yes, I am a full and willing contributor to this rapidly expanding problem, pun very much intended. 

I am a vain girl. It's in my blood, I can't help it. My darling 94 year old grandmother still puts on makeup everyday if that tells you anything. Ten years selling beauty in a tube left its imprint on me, too. So for me it's vitally important to feel confident in my appearance and I ain't apologizing for it, either. But with an illness as tricky as Fibromyalgia this resolve frequently works against me. How many times have invisible illness patients heard the phrase, "But you look so good I just can't believe you are sick!" and wanted to smack the purveyor of such careless insensitivity? I have, more than a few times. I believe this is one of the reasons Fibromyalgia is so dismissed. For the most part we just don't look sick. Eventually this disease takes its toll on the outside, though. Patients can enter deep levels of sleep deprivation, fall victim to the side-effects of prescription drugs, lose the ability to exercise or slip on a permanent frown-meets-grimace as time and illness wear on. It was easy for me to stop caring about what reflected back in the mirror when life became about surviving and enduring. It seemed ridiculous to spend effort and energy to primp and fluff myself up when there simply was no energy to spare. And what a waste to slather on makeup or coif my hair just to sit at home alone and feel miserable!

But think about a time, before you got sick, when you came down with the good old fashioned healthy person flu. After a couple of days of miserable bed sweats and delirious dreams the fever would break and you would drag your sorry ass into the shower. That action alone made you feel better, marked your arrival on the doorstep of recovery. Basically you started doing things to make yourself get well again and eventually you did. Last night was a big wake-up call for me. I believe if I want to be sick then I can live looking sick, but if I want to improve I must project that desire on the outside of my body, too. So I may have a face as round as the moon but damn it if I don't have a little blush and eyeliner on to balance out the puffiness. I may be bloated and hurting and have not one bit of energy to spare but garsh darn it, I am putting on jeans instead of sweats and brushing my hair! I am determined to look in the mirror and see a person that still, despite all the hardship, cares who is looking back at her.

Thanks for joining,

Leah

This blog was originally published on 9/22/10. As I re-post it today I am sitting in my sweats with no makeup on but can happily say I did brush my hair!

Why It Wouldn't Be Better

There is often a "trigger" event, usually an accident or illness, that sparks the neurological hailstorm known as Fibromyalgia. Mine was a momentous week when I tried to execute five massive life changing events in one seven day period. The chaos ended and the pain started. What ensued was a drastic overhaul of my reality as my basic functioning broke down over the course of the next few years. Every plan and expectation for the future I ever had was affected. Altered. Demolished, quite frankly. Normal became a heartbreaking memory and medical doctors became the bane of my existence. I only existed in the strangest kind of hell I could possibly describe. One where you think your muscles are gonna strip from your bones with pain that feels like a fillet knife through flesh. And turning the bedroom light off flips a blaring ON switch in your brain that won't slow down so you can't sleep but can't catch and ride the manic either. And you feel like this all day every day and it only gets worse and worse but every medical test returns normal results. And as you start to doubt your own sanity life slips from your grasp and you ceases to exist with the other sleeping and laughing people staring at you wondering what on earth your problem is. Like I said, strangest kind of hell.

Too many times during the last seven years I lamented the life I left. I thought about the career I didn't get to continue and the friendships I was too sick to keep up with. The lifestyle I certainly would have lived if I hadn't been struck by this mysterious destroyer of all things good and right. And I am always happy and laughing and rich and satisfied in this fantasy life of mine. Things I oh so was not before I got sick were magically mine, had I not gotten sick. The other day this suddenly struck me as preposterous. Why do I automatically assume things would be better? What if they were worse? What if I went down in a plane or lost limbs, in this magical life of my fantasy? Or had an ill child or was struck with terrible cancer? Surely these things are far worse than Fibromyalgia. So who is to say that wouldn't have been my fate? Who on earth is to say it wouldn't be better, and who is to say it would?

Life is a massive collection of experiences. Mine have taught me what a tiny little slice of all that's possible it really is. Again and again it has been slammed into me that I better grab as much meaning and purpose and love and laughter and passion as I can, no matter my circumstance, because as far as I know I am only getting to do this thing called life once. While I still can't answer why I got Fibromyalgia, how come I had strokes or what on earth life would have been like if I hadn't gotten sick, I can say I appreciate things I never would have imagined. Yesterday I turned 36. It was a very contemplative day for me. I thought about my birthday two years ago when I was given a stay of execution on the death sentence handed down just two days before. Never was there a sweeter day, until yesterday. Because quite frankly recovering from those strokes was a different kind of living hell, but another around the boxing ring for sure. I have finally recovered from the recovery and life is making itself a path again. I know we are supposed to hate getting older. The wrinkles, the sagging skin, those glory years fading further into the background. Hogwash I say! I have earned every crinkle around my eyes and the right to every, "When I was your age we didn't have a remote control and had to get up to change the channel..." story I want to tell. And the sweet satisfaction of knowing, just for today, life is still mine to live. 

Thanks for joining,

Leah

I Am A Bad Mom

Last Saturday evening we had some friends over for dinner and they brought their darling thirteen month old bundle of joy along. We'll call her Grace. Well Grace is a boisterous little girl, embarking on toddler-hood full speed ahead with the joy of discovery just beyond her fingertips. As she teetered erratically around my small apartment we laughed at the mishaps a nowhere near childproof house provided as entertainment. I even dragged my mini-trampoline out and bounced her on it. Oh she sure liked me! But as all this is happening my own daughter was not behaving so well.

Porkie flew into full alpha-bitch mode moments after the young family walked in the door. Curious, she was also a snapping turtle anytime she got near Grace. It didn't take me long to realize my dog was worried this two foot tall human was going to usurp her place in the pack. So we did what people do, spent all night exhaustively trying to keep the snapping turtle away from the toddler. To say I was embarrassed was an understatement. But I didn't realize my full culpability until I was walking her on Monday and she went ballistic when she saw a Jack Russel Terrier she likes to get particularly riled up about when crossing paths. The snapping turtle returned and she wriggled around, flipping out of my hands like a fish out of water when I tried to contain her. Suddenly the scales fell from my eyes and a resounding This is your fault reverberated around my head. Surely if she got free she would attack this dog and what would become of her then? 

So discipline mom roared to life and "train the dog" boot camp went into effect. Porkie is a rescue who came to us with past abuse and a terrible fear of people. She has made a lot of progress but along the way developed fear aggression that drives this violent behavior. We got her in June of 2010 and a month later I had the strokes. To say life has been an insane tailspin since then is an understatement. Her training went by the wayside in the wake of such severe catastrophe. Oh did I chastise myself, wondering how I justified such a terrible disservice to this little puppy as to not teach her manners. Then I took her on a walk and she wouldn't pee, for the life of her she just wouldn't. Within 30 seconds I remembered why I have not trained my dog to good behavior. Up until the last few months my stress-response was nonexistent. I simply didn't have the capacity to proactively engage in something that would frustrate me or make me angry. But my brain is getting it together and now I am ready, and embark on it with forgiveness towards myself. I see a lot of parents with Fibro who feel their children are shortchanged or life is unfair because of the parents illness. I can only imagine how painful that must be. But instead of fixating on the past that cannot be changed I am finding myself excited to figure out how to move positively into the future. The one place an attitude can be changed for a better tomorrow.

Thanks for joining,

Leah

Beware Of Who You Listen To

 USDA Food Guide Pyramid

In 1992 the United States Department of Agriculture published dietary guidelines in the shape of a pyramid to represent daily serving recommendations. The higher up the pyramid a food group sat the less a person should consume. Well last week I was going through a big huge box of a nightmare of medical bills and records searching for a needle in a haystack and I came across a glossy full color brochure of this pyramid circa year 2000. I was shocked to see a recommended 6-11 servings a day of bread/rice/pasta/cereal. Are you kidding me? I didn't know a person could eat that much in a day and have room for anything else. But what really got my goat was seeing a small order of french fries listed as two servings of vegetables! And we wonder where heart disease came from...

They changed this pyramid drastically in 2005 after America reached epic levels of obesity. Perhaps pasta with a bagel and Honey Nut Cheerios is not a nutritious breakfast after all? I am glad to see current recommendations, the pyramid shown above, are becoming hip to the concept of natural eating. When I got sick it didn't take long for me to realize not every ailment in life came with a pill, procedure or medical cure to fix it. I immediately looked at what I fueled my body with, seeking out an honest to goodness education in clean nutrition and holistic principals. But the more I discovered the less sense how I was taught to eat made. Hell, how I was taught to live made. Things like margarine and diet soda quickly became nothing more than poison to me, things I wanted to avoid at all cost. High fructose corn syrup, oh no we ain't friends no mo'! Years later I have made this my lifestyle. I eat as clean as I can and shun chemicals both in and on my body. It didn't cure my Fibro but is a big component of keeping it managed. On the occasions I decide to go off the reservation boy do I sure pay with an ugly reminder of what a processed diet does to me.  

This experience taught me a huge lesson in life, not to take anything at face value. No longer do I live and die by the doctrine of  massive, interest-driven agencies telling me what to believe as absolute truth. Perhaps this huge misdirection in dietary guidelines is what gave me the courage to buck modern medicine when it failed to offer a treatment or cure for symptoms so severe they disabled me. They told me to live with it. I couldn't and embarked on yet another journey of self-discovery in learning how to get a grip on my life and therefore my illness. Getting sick taught me many things I didn't know before. It will teach the next person completely different things, concepts and realities closely vetted to who they are as a person. We are all not the same but the spirit of survival is inherent to all animals, the human no exception. I refused to be a victim and figured out how to make life liveable again. On my own terms, using knowledge I sought out that made sense to me.

Thanks for joining,
Leah

Routine vs. The Rebel

Focus vs. forgiveness, progress vs. permission, action vs. acceptance. These are virtues I struggle to balance daily. As a Fibromyalgia patient I must make certain concessions and accept limits I did not have before I became ill. Juggling all the components of my life is both necessary and critical to remain "managed," meaning I have more control over my life than Fibromyalgia does. I must get my sleep, daily exercise, eat a healthy diet and manage my stress. I have to listen to my body and take it easy when something feels out of sorts, knowing it's either those wacky hormonal fluctuations or a flare sneaking up on me. Paying attention to my mood and pain levels usually tells me the aforementioned set backs are on their way. If I cocoon myself and catch it early I can usually save myself days of misery. But then 28 habitual years of that overachieving type-A OCD perfectionist kick in and demand some darn progress out of life! She wants to move forward to bigger and better things, actualize the greatness life is waiting to manifest, lead the charge and make it happen. Hence the struggle to meld the dichotomy of routine vs. the rebel. I need routine. Have even convinced myself I enjoy the turtle paced progress of life when I know what to expect and what I need to do to make it happen. But I am so easily distracted, thrown off course after a couple of days of boring and predictable routine. I am also incredibly gifted at coming up with excuses, reasons to indulge my whims and not stay on track. I can negotiate myself out of anything! I suppose this all goes back to a discipline issue.

Now that high-dose Prednisone has been thrown into the mix life is all the more intense. This must be the yang to my many years of CFS and Fibromyalgia yin, where I sat around the house too sick to actually do anything. An attempt for my life to balance itself out, perhaps? All I know is life these days is urgent. The second I get up in the morning it's as if someone takes a clock and chucks it far out in front of me. I spend the rest of the day racing to catch up with it, tripping and stumbling into pot-holes and snarled brush along the way. If I see something that needs to be picked up and put away it becomes the most important thing in the world to do it immediately. No, faster than immediately. When did I become this ubber uptight ninny who flips out at the slightest lack of control? I am incredibly bitchy and have forgotten how to laugh, let things roll off my back, see the poetic humor in things both good and bad. I am taking myself way too seriously! But I can't stop! 

By the time my husband comes home from work I am a wreck. Dinner not made, the house an explosion, puppies ignored. You all get it better than anyone, I needn't go on and on. But when I fall apart, he falls apart and then our life falls apart, making it that much harder to get back on track. This is a particularity formidable time in my life. I am attempting to not balloon up on steroids (and doing a horrible job I might add), manage a chronic illness that requires a significant amount of effort to keep in its proper place all the while not taking for granted I just survived two strokes at age 33. I am attempting to stay calm and focused on my greater purpose and glean my strength and peace through God, not wig out on a Prednisone tail spin. So I have made a few key commitments to myself, and I am going to let the rest flow from there. Mainly sleep early, get my chores done earlier, stretch everyday and fix myself up, take some pride in my appearance. I must stop living as a sick disheveled mess and putting on jeans reminds me to eat far less than when I am wearing sweats. And I am going to slow down, too. I may not be stronger than Prednisone, but God is. So I am taking the burden of manic off myself and turning it over. I have a calling on my life, one I never expected, to lead The Fibromyalgia Crusade and change the quality of living with this disease for all of us that suffer from it. Yet I am but one tiny little woman with one small voice. If I want to lead this charge I must humble myself and recognize where my true strength and focus lies. With God, in the divine, from the almighty. Amazingly enough, I feel better already!

Thanks for joining,

Leah

This blog was originally published on 9/21/10. I have to laugh as I read this one, for I am still working on those key commitments! Prednisone was a terrible high that crashed into a horrible low once I got off it. Any halt of Fibromyalgia symptoms came flooding back ten times over. Oh what a journey we are on friends, battered and bruised by illness as we strive so hard to live this thing called life.