Blood Flow To My Palms?

Hearken the good tidings my friends, they have found the cause of Fibromyalgia! With rapt interest I poured over the scientific studies and research papers to try and understand what had been discovered. Most of them seemed to start with the disclaimer that a large portion of the medical community believe Fibromyalgia is psychosomatic. Until now. I'm not going to lie, that pissed me off pretty good. Like now that they "know" there is something real going on they can admit they thought we were all a bunch of loonies inflicting sick on ourselves. But I suppose I knew that would happen... I am still excited to find out what exactly descended on my reality like a hell-storm eight years ago and stole my life so I kept reading. Turns out it all goes back to...the blood vessels in my palms? Huh? Are you kidding me? Blood vessels in my hands are responsible for fatigue, insomnia, a depressed immune system and pain so profound I wanted to die? I'm sorry, but it seemed so unbelievably trivial I couldn't understand why everyone was making such a glorious fuss. So I kept reading. 

Slowly it started to make sense. The body is a system dependent on many different parts to complete it's basic duty, living. When one of these parts malfunctions the sky is the limit on how many other components of the system are affected. That is precisely what is going on. Basically artery shunts in the hands of Fibro patients have an "extremely excessive" or "staggering amount" of sensory fibers. This excess interferes with the regulation of blood flow throughout the body, especially to the deep tissues and muscles. Amazingly enough "this mismanaged blood flow could be the source of muscular pain and achiness, and the sense of fatigue which are thought to be due to a build-up of lactic acid and low levels of inflammation in Fibromyalgia patients. This, in turn, could contribute to the hyperactivity in the brain," which may lead to insomnia. Medical Daily

Voila! There you have it. Except...I now have even more questions than I did before. Like how did I get this? Why? Is it genetic, trauma induced, related to damage to the CNS from other illnesses or infections? What can I do about it? Is there a treatment or cure? When will they begin testing all patients? What about the blood test showing an immune dysregulation? Are they compatible, related discoveries or do they contradict each other? Is this the true cause of my illness, or does something else cause this? Does this account for my obvious immune deficiency? The questions are endless and I don't know where to get answers. I already know far more about this condition than all my doctors combined. As a skeptic of modern medicine I believe it will still be years before anything conclusive that actually changes the reality of living with this illness for patients comes about. And years beyond that for medical doctors in practice to become hip to this change from psychosomatic to the palm of my hand. Nevertheless this is a big one for us, fellow-Fibro patients. A wonderful step forward in legitimizing an illness those who suffer from already know is painfully real.

Thanks for joining,

Leah

Sources:

Integrated Tissue Dynamics      

Pain Medicine Journal

Medical Daily

The Pain Of Progress

It hit. The colossal flare I knew in the back of my mind I was marching toward but somehow thought a positive attitude could prevent. See I did it again. I've done it lots of times. Convinced myself my behavior causes direct consequence to my health. To a small degree it does, but in actuality it's resoundingly the other way around. I do think it's normal to question "living sick" every so often by challenging the status quo. Normal, even if the outcome is terribly devastating to any sense of progress a person tries to make. So here I sit all pissed off and bent out of shape I because I am being horribly punished for...trying to improve my life.

The absurdity makes me so angry at this stage in my journey. Real, normal, healthy life is just out of my grasp, a feather's whisper away from my reach. It mine as well be miles, though. Closing the gap on living sick and living like a human being with chronic illness is a long and arduous road. Some days I don't think I can possibly take another step. Today is one of those days.

But just like the need to ruffle myself up and polish both my dining room table and toenails to perfection passes, this misery will wane too. Nurturing myself back to balance will nullify a significant amount of the progress I made on my road to self-improvement. Once I balance out again I will be able to pick up a few feet of the mile long progress I prayed was ahead of me. And I'll keep going. I always do. I figure at the rate I'm going I just might have this Fibromyalgia thing down by the time I'm 92.

Thanks for joining,

Leah    

Crisis Of Purpose

A few weeks back I bottomed out psychologically. My inner Chicken Little ran around ranting and raving like the sky was falling. Any sense of purpose or progress in my life vacated my reality. In fact I didn't know who I was, what I was doing or where I was going. And certainly couldn't make sense out of where I'd been. Misery soaked my aura in radiating beams of destruction. Slicing through the air like a million lightsabers clearing my path to ruin. I was absolutely certain I would never be able to write another word in my entire life. I got mad I wasn't back in school or working. Simply not contributing to the household financially made me feel like the biggest loser in the world. And the fact that most afternoons found me in my sweats, hair pulled back in an elastic with an unwashed face and unbrushed teeth, well it was embarrassing. In the simplest terms my entire existence...offended me.

The back of my mind screamed, "This too shall pass!" but I didn't really care or believe it. Trying to count my blessings or focus on the positive seemed utterly frivolous. All I felt was profound disappointment and anger. How did I work so hard to get my life back from umpteen illnesses only to be living...like this? Did I have the strength to keep on this road, believing in a better tomorrow with all my might? Or was I being a delusional ninny? A significant amount of philosophizing and bargaining rattled around my brain. Finally my hormones and chemicals and viral surge sparking this disillusionment settled down enough for me to find a speck of light in the far off distance and start to march towards it. Luckily the more determined I became to reduce my misery, the bigger the light grew until it was shining brightly over my culpability in this whole mess.

I realized I do have job. One I don't like, didn't want and wasn't raised to find value or satisfaction in. And boy was I doing a terrible job at it! So Leah the housewife recognized she needed to buck up and expect a little more from herself, and a funny thing happened when she did. I realized there is actually immense pride to be taken in creating and maintaining a comfortable and ordered home. I was just so damn sick for so damn long the absolute last thing I cared about were dust bunnies and spots on my carpet. I've worked very hard to balance my life and get my pain under control. Cooking and cleaning no longer evoke such agony I want to fling myself off a steep cliff. The time had come to shift my expectations and challenge myself to forward progress. So I cleaned my house.

But all that happened after I got my slovenly ass off the sofa and into the shower. It seemed stupid the first few days, putting on makeup and doing my hair to just sit at home by myself. Not too many days in I realized the immense value in caring about my appearance, though. When I look better I feel better. I am prepared to actually leave my house and go live life if the opportunity presents itself, and it did. A friend called mid-morning to see if I wanted to meet for lunch and I was actually able to say yes! So onward I march. My house a little cleaner, my blush a little brighter, my hope that life with this illness can actually improve a little bigger.

Thanks for joining,
Leah    

The Dance Card Of My Choosing

Last year a series of unfortunate events rocked my world. Normal stuff everyone deals with like hosting a birthday party, surviving the holidays, falling on my face while running my dogs. But something was different. Did I hit my emotional bottom? Maybe the utter lunacy this illness forces one to live with day in and day out pushed me over my tipping point? Perhaps I healed enough from the strokes my true personality started to rear it's impatient head and didn't like what it saw? I can't say it was one thing. More like a paradigm shift of epic proportions enveloped me. I'd had enough. Stop the bus, I need to get off. I couldn't take one more round of the Fibro cycle. That push-crash-push-crash-push-crash nightmare of unmet expectation and constant disappointment. Waking up every morning either flaring or angry, because I knew by the end of the day the other would have taken over.

That funny thing called clarity smacked me upside the head and I knew I couldn't do one more tango on that dance floor. For the first time in my life I took responsibility for even standing in the ballroom in the first place. Yeah maybe others told me to foxtrot, encouraged me to two-step, got mad if I didn't cha-cha with their equal fervor. But ultimately at the end of the day none of that mattered. What was important? How I neglected me, my heart and soul, as penance for getting sick. Repetitively assaulting myself by believing I wasn't worth more than being...a disappointment. 

So I set out to change. I couldn't wave a wand and make my illnesses disappear, but with lifestyle management I sure could minimize their impact on my quality of life. It's hard to change direction when you think you're stuck on a train track barreling full speed ahead. Like everything else in my life since I got sick my efforts were slow, hard, painful and arduous. The only way I saw the possibility of living a successful life was to stop caring about what everyone else thought/expected/wanted. The few principle relationships in my life became my focus and the rest ceased to be more important to me than me. I don't like being unpopular and my new practice wasn't well received, for a bit. Oddly enough they got over it pretty quick. Which was good, but funny, because the whole point was I wasn't supposed to care anymore. 

Day by day I made choices by considering the outcome first. If it sabotaged me, I didn't do it. I felt terribly selfish initially, fueled by progress's biggest aggressor, guilt. It is now, half a year later, so obvious what I needed to do. How I didn't see it sooner mystifies me. Comparing my output and lifestyle with healthy people, or even expecting them to understand my reality, seems completely ridiculous now. And I've discovered that havoc-inducing guilt is but a silly indulgence. See the point wasn't to hole myself up in a cocoon where I could strike out at the attacks of life like a self-absorbed twit. The purpose of all this was to retreat, improve, and come back out again. Able to engage in this thing called life in ways that don't make me sick. And it really does feel that simple. 

Thanks for joining,

Leah 

It's All Just Somatic Symptom Disorder

My husband and I were watching Downton Abbey when the subject of cancer came up. This inspired a lively discussion about the origins of cancer awareness in society. I said they knew what it was by the mid-1800's. He didn't think the disease was identified or term used before the 1930's. So of course my friend Google swept in to settle the debate. Needless to say I was right, or more right than he was, which is really all that matters. So as I am reading through information on the evolution of cancer knowledge throughout history something made my jaw drop. "Cancer was thought to be caused by trauma until the 1920's."

Wha-wha-wha-WHAT? After I stopped flapping my wings long enough to settle down I realized how wonderful this tidbit of information actually was. Maybe there is hope for us yet, Fibro friends! Less than a hundred years ago evil, rapidly-replicating cells gobbling up the good ones were thought to be trauma-induced. Today they don't know the causes of all cancers, per se, but society generally recognizes it's not a mentally inflicted illness. I felt wonderful justification all my ranting and raving about science not understanding Fibromyalgia YET held truth. 

But a scary line is about to be crossed. The American Psychiatric Association is slated to publish a revised edition of their Diagnostic and Statistical Manual of Mental Disorders (DSM-5) this month. This impending revision has much opposition and created quite a scandal across many disciplines in medicine and the community. Why? Three words: Somatic Symptom Disorder. What gives you this diagnosis? Report one physical symptom you find distressing or disruptive to daily life for at least six months, along with one of the following:

A) Disproportionate, persistent thoughts about the seriousness of symptoms.

B) Persistently high level of anxiety about health or symptoms.

C) Devote excessive time and energy to symptoms or health concerns.

Yea, like I said, scary. Basically if science, in it's limited fallible wisdom, can't tell you what's wrong with you, and you do something as outlandish as obsessively care you are sick, it's a mental disorder. Do I really need to highlight all the problems this will cause? The National Institute of Mental Health even voiced opposition, for about a week. However, in typical big-government fashion they've redacted their concern and now proclaim it's a "complimentary" diagnosis, not "competing." But please don't panic! These diagnostic criteria don't go into effect until late 2014, and we have a great many knowledgeable and important voices shouting from our corner.  

"Mind you, studies by the American Psychiatric Association have already shown that 15% of folks with either cancer or heart disease would be diagnosed with this disorder, and 26% of those with irritable bowel syndrome or fibromyalgia. What’s more, 7% of people who have no active medical diagnosis also could qualify." *Dr. Keith Ablow, Fox News

"Many years ago, the late Thomas Szasz said: 'In the days of the Malleus, if the physician could find no evidence of natural illness, he was expected to find evidence of witchcraft: today, if he cannot diagnose organic illness, he is expected to diagnose mental illness.' DSM 5's loosely defined Somatic Symptom Disorder is Szasz worst fear come true." *Suzie Chapman, Health Advocate

 "The publication of DSM-5 is a sad moment for psychiatry and a risky one for patients. My recommendation for clinicians is simple. Don't use DSM-5 -- there is nothing official about it, nothing especially helpful in it, and all the codes you need for reimbursement are already available for free on the Internet or in DSM-IV." *Dr. Allen Francis, Chair of the DSM-4 Task Force 

And here we sit. Some days I think we are getting closer to legitimacy. Today is not one of those days. The ruling forces of our world will continue to squash the masses into easily controlled categories. It's what they do. It is up to us, more than ever, to be responsible for ourselves. Educate yourself and try new things to help make life more bearable. Exist in your truth and seek out doctors who won't shove a neurological illness into a psychiatric category. Pay attention to the research and developments pertaining to Fibromyalgia, and be aware of the challenges constantly hurled our direction. I believe, with every beat of my heart, one day my great-great grand-niece will scan the microchip of information implanted in her brain and flap her wings at the thought of Fibromyalgia being a psychiatric disorder. It's up to us to make that happen.

Thanks for joining,

Leah 

One More Layer Of Acceptance

I've been extremely irritated to discover lately I've been extremely irritated. Over everything. Not overwhelmingly or anything, I certainly haven't been ending each day puddled into a sobbing heap like I used to. Thank God. But a few weeks ago I was feeling much more positive about life in general. This week I am plagued with disillusionment and self-doubt. Some soul searching led me to discover a fair amount of these feelings relate to being sick with this quasi-disease sickness some people accept, others laugh at, and nobody can agree on. No foolin'.

Mother's Day is Fibromyalgia Awareness Day. The irony seems bitter to me, considering I don't know exactly what illnesses or disability or near death experience I was supposed to squeeze starting my family between. However I am grateful for the opportunity to celebrate with my own mother, least I forget my blessings and drown in self-pity. I've devoted a significant amount of the last two years to writing a fictional novel that will bring big-time awareness to Fibromyalgia. It's an insurmountable task which has brought me much joy, even if some days I wonder if I am wasting my time. But lately I've been wondering if I am out of my mind. And then there is the nagging question I will never have answered but can't seem to stop asking. If the multitude of medical professionals I sought out in the early phase of this illness would have taken me seriously, and not sent me out the door with a patronizing anti-depressant prescription and pat on the head, would I be disabled today? 

And around my head they whirl. My issues. My goals. My sorrows. My anger. Seriously, dude? Am I going to  go through intermittent phases of this crap forever? It was through talking with my friends who have Fibro I made my peace. Yes, I will. Because the human animal is an animal. The will to survive has created an instinct to persevere at all cost. And living with chronic illness is not a natural state. No matter how much I mentally coach myself to focus on what I have and not what I don't, it would actually be unnatural to never experience periods of restlessness or outrage. I am imprisoned and this is outrageous! Ahhh, I feel much better now. It's amazing what finding an outlet can do for those pent up feelings. So in the spirit of moving past my melancholy I made a date with my mom for Sunday. Just a friendly warning, if you see two crazy ladies in The Fibromyalgia Crusade t-shirts downing a carafe of wine and laughing ourselves silly as we trip through memory lane, well, you found us.

Thanks for joining,

Leah