This afternoon’s thought:  I’ve been thinking in terms of how all the different imbalances and symptoms of fibromyalgia might relate to thyroid.  In other words, think of the universe.  Thyroid is the sun and everything else relates to it, revolves around it, depends on it.  What if it’s more like a chain reaction?  You have the first explosion, which causes the next, and then the next and the next, etc etc etc.  For the sake of argument, a thyroid malfunction of some sort is the first explosion, which then causes another dysfunction somewhere, and on and on.  Thyroid is really only related to that second explosion.  The second explosion is really only related to the third, the third to the fourth…

This actually presents a bit more of a complex puzzle and could explain why there are so many different variants between how people experience fibromyalgia.  Looking at how everything relates to each other, it’s possible to have a myriad of different “pairs” of problems, like dominoes.  They can go end-to-end in many different combinations.  There isn’t just one way to do it or the whole thing falls apart.

Or… it could be one of those brain teasers you pick up in the store, look at, put down, and walk away, deciding you don’t need a puzzle to point out how stupid you may be.  Maybe the pieces do have to be paired perfectly and in the perfect order to be able to trace back to the first firecracker that started the chain reaction.

No matter what type of puzzle it is, the goal to me would be to find that first firecracker or the first match that’s struck and stop it from striking.  Yeah, I don’t know how to do that.  All I know is when I solve a puzzle, I have to look at all the pieces, scatter them around, sort them by color and type, and then look for the similarities and the differences.  I have to look for the pieces that actually were in the box by accident and get rid of them.  There are a lot of extra, very distracting pieces in the fibromyalgia puzzle, and it’s possible I’m just holding a plastic bag with pieces from four different puzzles all mixed together.  Time to empty the bag on the floor.

At last a ray of sunshine… I found an abstract today that indicates people with fibromyalgia can get relief from symptoms by moderate drinking.  Of course the title of the abstract says “low-to-moderate,” consumption, but in the abstract itself, it says “moderate drinkers versus abstainers.”  Go figure!  Maybe I’ll go get that box o’ wine!

So this study had patients keep track of their sleep, pain, and alcohol consumption.  People who drank a “moderate” amount had “greater bilateral hippocampal volume, lower clinical pain intensity, and better sleep quality.”  In other words, better brain, less pain, and better sleep.  As always at the end of the abstract it says that further study of the relationship is warranted.  Sign me up for that study!

Seriously, I know that moderate regular alcohol consumption does not improve anything in the long run – at least not in my world.  I don’t make it to the end of the box o’ wine before I have a pretty severe reaction to the sugar, which includes increased pain and a bleary brain, and I would likely not sleep so well after the first couple nights.  Their study only lasted 14 days.  It would take longer than that for my reactions to the sugar in alcohol to register.  Maybe I should drink the box faster and see what happens.  What do you think?

I’m not saying they don’t have a great idea, and I wish them all the best…

“An inherited imbalance in neuro-vegetative systems resulting from increased sympathetic tone because of a metabolic deficiency in the serotoninergic system…” is how Coaccioli et al describe fibromyalgia.  My first instinct was to flop on the floor and throw a temper tantrum of frustration.  Instead, I broke it down:

1. Inherited… genetically passed on from generation to generation
2. Imbalance in neuro-vegetative systems… refers to the autonomic nervous system – this controls things like breathing and digestion, things we aren’t conscious of.
3. Increased sympathetic tone… sympathetic nervous system, which is pulling in a cardiac aspect, which I haven’t really read much about in conjunction with fibro.  Increased sympathetic tone can be a cause of high blood pressure.
4. Metabolic deficiency…”Abnormal chemical reactions in the body alter the normal metabolic process” (Wikipedia)
5. Serotoninergic system…. located in both digestive tract and brain, ultimately having to do with regulating mood, sleep, appetite, and blood clotting, among other things.

So…doing a little rewording, Coaccioli et al managed to say that fibromyalgia is genetic, a chemical imbalance which affects things we aren’t usually even aware of doing, including digestion, heart rate and blood pressure, and metabolism, thus messing up our mood, sleep patterns, appetites (to the detriment of girly figures), and even something as basic as blood clotting.  So almost everything we have little or no control over gets messed up.  Still, they sidestepped the question I keep coming back to – would fixing just one thing make all these other problems settle down and into place?  Metabolic deficiency.  I’m going to look there.

Fibro is a difficult disease to characterize.  After taking a few months and reading a bit about the different studies and different ways physicians have described fibro, it becomes pretty obvious that while there are a few common threads, there’s a fairly wide range of definitions of fibromyalgia.

I’ve listed a few of the ways that fibromyalgia has been characterized.  My suspicion is that it would take elements of everything below (and others I haven’t made note of) to really be able to define the disorder.  I also suspect that the below is not characterizing the disease itself but describing the consequences of the underlying cause of fibromyalgia, whatever that may be.  The below are hints, bits of the puzzle….

Talking with my dad this weekend about fibromyalgia, he kept going back to the idea of fibro as being sort of a self-fulfilling prophecy.  If people expect to feel a certain way, they do.  I don’t agree, but definitely acknowledge that there is a psychological component to this and any disease.  If symptoms are focused on, they become more intense.  People with cardiac arrhythmias become aware of their heart beating, something most people are completely unconscious of.  It’s the same with fibro.  The more you’re aware of the pain, the more the pain is enhanced.  There’s another psychological component to fibromyalgia, however, that may be a little more particular to that condition.

One of the few things that people with fibro or studying fibro agree on is that psychological stress enhances symptoms.  It would be interesting to see a study on whether people with fibro tend to “eat” stress instead of express it.  I know I do.  Yep, sometimes it comes out in a bit of a rant, but usually serious stress and disappointment just get sucked right in and nestles down.  It’s not that I don’t come to terms with it, but I don’t express it.  At the same time, my son has called me a drama queen… so there is a little bit of a paradox.  But there is no doubt that when extreme emotions build, the body falls apart.  Disappointment hit me last night.  No, I’m not going to air this bit of laundry despite my life-as-an-open-book policy, but I am going to track to see if it triggers an attack.  May as well use the unfortunate opportunity for a bit of research, right?

It’s a good thing I like words.  One of the things I’ve always wondered about was if I could get all the fluid out of my joints and wherever else it’s not supposed to be, would I feel better?  I’ve found a study that says yes. Check et al (see library) talks about how when people stand, the fluids in their bodies aren’t flushed out the way they’re supposed to be when they have a deficit in the sympathetic nervous system (creating increased “capillary permeability”).  That’s really simplistic, but it boils down to hands and feet and legs swelling throughout the day.  They mention that they have been able to help people with rheumatoid arthritis, chronic pelvic pain, peripheral vascular disease, and other conditions.  While they mention chronic pain conditions such as fibromyaglia, they don’t offer anecdotal experience with fibro.

First of all, I remember back when I was a teenager complaining that I couldn’t make a fist because my hands were all swollen.  By the end of the day now I have swollen hands and feet.  My legs don’t generally swell – I’ve only noticed cankles after a long day at a tradeshow.  It’s noticeable enough that I have trouble wearing rings and buying shoes (as well as keeping my shoes on throughout the day).  Once when I had a chronically swollen ankle, the rheumatic doctor drew quite a bit of fluid out of it to test.  As soon as the fluid was gone, the swelling disappeared and the pain went away.  I did ask if he could just do that to all my joints, but he declined.

Second, what they are talking about is a dysfunction of the sympathetic nervous system, which I’ve seen mentioned more than once regarding fibromyalgia, since it is a dysfunction of the central nervous system.  I need to see if there is some connection here.

Third, they have a cure.  But it kind of scares me.  Dextroamphetamine sulfate.  It’s what you give kids with ADHD.  Of course, by its name I would say it’s sulfa based, which means I can’t take it.  However, they not only have a test (water load test), but a cure as well.  Worth looking at…

Going on a quest without a map generally means going down dark alleys without a guide, getting lost on dead-end roads, and sometimes driving off the road and into the ditch.  Another risk is drowning in a flood of information and giving up completely.  Another is finding what you think is the grail and clutching it without further thought of any other possibilities.  I’m struggling against all of these risks while I investigate what the heck fibromyalgia really is and what the heck I can do about it.

Mostly I’m going between being overwhelmed with knowing how much I don’t know and thinking I should just quit, and clinging to one theory to the neglect of all other theories.  I admit, I’m a little worried about getting older with fibromyalgia.  This past few years I can really feel the difference – I worry about mobility and cognizance.  It won’t work to get too involved in this quest, though.  I need to maintain some distance to be able to look at all the possibilities out there.  Like I’ve said before, fibromyalgia is a complex problem.  There won’t be a simple solution.  In many ways I have a strong advantage to study fibro: Ignorance.  I don’t know enough to dismiss possibilities out of hand.  That’s a good thing. I have to keep those blinkers and blinders off and look at this with fresh eyes and an open mind.

Yes, I still like the thyroid utilization theory, but I need to find the connection between it and the loss of gray matter, the rheumatoid symptoms, the chemical imbalances, all the things that researchers have pinpointed as characterizing fibromyalgia.  There is no leaping at a solution.  All the studies I read about say “further studies are needed…”  So, in the best research rhetoric:  I like the thyroid utilization theory, but further study is needed, including management of symptoms while this study is being executed.  It’s all going to be okay…..

I had a brilliant idea this morning when I woke up at 5:14 AM before my alarm smacked me over the head and drilled another hole.  Okay, it’s not brilliant, but at 5:14 AM, everything is brilliant or should be, and on Tuesdays, it’s even more important, because let’s face it, Tuesdays are the transparent days of the week.  They’re a figment of our collective unconsciousness, serving the only purpose of rounding out the first part of the week to create the middle of the week.  Can you tell I don’t want to be at work?

Okay, here’s what I decided this morning. I’ve been reading about how fibromyalgia is characterized by doctors – their perception of it – about the different ideas they have in terms of causes and treatments, what to treat, what not to treat, what to study, etc etc.  I kind of forgot I’m the guinea pig here.  Do guinea pigs have red hair?  Anyway, to help fill the Tuesday void, I’m going to chronicle on Tuesdays what the week looked like in terms of symptoms.  I’m looking for patterns, connections, ways to characterize my own experience, because no matter how many ways you look at it, everyone with fibromyalgia has a different experience.  Don’t worry, I won’t be blogging my symptoms – probably TMI and definitely too self-absorbed.  I’ll have a separate page on the main site, “Captain’s Log,” or something like that.  Those who are interested can peek.  My disease is an open book at this point.

Oh, and in case anyone is unclear about the difference between signs and symptoms… symptoms are subjective – we feel them, report them.  An ache is a symptom.  It can’t be quantified.  Signs are visible and quantifiable.  For example, a rash is a sign of an allergy, not a symptom.

So there you go – my brilliant early AM idea.  Like I said, not so brilliant, but it’s Tuesday.  Still. It’s still Tuesday.  Noon on Tuesday. Someone help me.  Where’s the white rabbit and Laurence Fishburne?

Sometimes it helps to stand back and take a look at the big picture before trying to fit another piece into the puzzle.  That way you don’t end up with sky pieces in the ocean.  So I’m going to sort a little before getting out the scissors to make things fit.

1. The thyroid problem may be the key to other hormone/chemical issues.  I need to step back and study better how hormones work. Garrison (I think) said something about cascading hormone dysfunction.  You fix one problem and other problems fall into line.
2. Signs versus symptoms.  Up until recently, I didn’t think people with fibromyalgia had signs, only symptoms.  I need to track both and see how they interconnect.
3. Politics and economics.  I need to figure out why research into fibromyalgia doesn’t seem to be going beyond ineffective drugs and characterizing the disease.

This weekend I stepped away from the quest completely and read a book about Ethyl Rosenberg’s brother, David Greenglass (a very ironic name when you think hard enough about it), who essentially condemned them to death all by himself.  Interesting read, but today I can’t see past the end of my nose.  And in the meantime, the world continues to spin out of control.  Fifty dead in Orlando.  Violence every day elsewhere. Politicians and wannabe politicians spouting PR. Friends taking trips down conspiracy rabbit holes.  I look out the window of the breakroom and see flowers budding under heavy gray skies, and I know, no matter what, the world continues to spin.  There is beauty out there.

I am walking like Frankenstein’s monster today.  My head may be flat too, but I haven’t looked in a mirror that closely yet.  Definite yes on the neck bolts.  The problem?  Exercise. The good news?  This is NOT fibromyalgia pain.

I’ve been doing Crossfit for about six months now.  Or almost six months, I don’t know, but it’s been long enough that I can say definitively that extreme exercise is a great thing for me.  I can work in my garden without getting so out of breath that I have to stop and lay down before passing out.  I really do have more energy, when I’m not feeling quite so green and flat-headed.  However, there are two types of pain I have to keep track of:  the fibro pain and the non-fibro pain.  Right now the non-fibro pain is kicking my butt.  My back (bulging discs and arthritis throughout my spine) is making the ordinary very difficult, stairs, dishwashing….  That pain extends down into my legs with sciatica and bursitis.  My hip shots didn’t take this time, so I’m heading quickly back to the pain I was having before I took a break.  But – more significantly than the too much non-fibro pain is the LACK of fibro pain.  I really only swell and get fibro pain when I walk at lunch time, and when I am able to pick up the pace, that’s minimal.

I can’t ever say everyone with fibromyalgia should try extreme exercise – there are too many variables – but I know I feel better even when I feel terrible, like today, and pushing the boundaries of what I think I can do is important.  Last night at Nanos I cut weight, skipped five burpees, refused to run and rowed instead.  I crept back closer to my safety zone but was still well out of it.  Boundaries are important.  They are what will keep me on my feet, but more important is setting the boundary past my safety zone.  Sometimes it’s more important to jump off the deep end and remember that you can actually swim than it is to creep into the shallow end and try to get the cold water past your privates slowly, if you know what I mean.

Mindset is everything.  Yes, set boundaries, be sensible, no point in getting hurt.  No, don’t hide in the boundaries.  Balance and common sense.  And always get out of bed in the morning, no matter how much you just don’t wanna.