When solving a puzzle, it helps to sort the pieces – make a pile of sky pieces or forest pieces, sea pieces, boat pieces, puppy pieces, etc.  So you dump the pieces on the floor and start sorting through and making piles.  Big pictures are compiled of little pictures and those little pictures have to connect together properly to make the big picture, or you can end up with a yacht sailing in a forest sky.  To gather fibromyalgia pieces into little interconnecting pictures takes questions….

• How does the endocrine system connect to the central nervous system?
• How is the endocrine system connected to brain function?
• Which chemicals do thyroid levels affect?  Is there one hormone or chemical that would cause other imbalances?
• How are rheumatological symptoms affected by hormone levels?
• What areas does metabolic deficiency affect?  Does metabolic deficiency extend to hormones? Are hormones metabolized? How are they processed/metabolized?
• How much does water retention or inflammation play a role?  Would it be worthwhile to have a water load test to check for capillary permeability?  How does that actually connect to the sympathetic nervous system and then to the central nervous system?
• How does the thyroid utilization theory (or thyroid resistance) connect to gray matter/rheumatoid/chemical imbalances?
• Do the symptoms of autoimmune thyroid line up better with fibro symptoms as opposed to thyroid utilization (or thyroid resistance)?  Which is closer?
• What chemicals “cause” aging?  Are they the chemicals that are out of whack and cause fibro symptoms?  Is aging caused by a reduction of chemicals or an increase in chemicals?
• What is actually the psychological connection to chronic pain?  Disorder of perceptual organization? Early psychological trauma?
• If mitochondria is really changed in the course of experiencing chronic pain, can it be changed back to normal?  If gray matter is reduced in the course of experiencing chronic pain, can it be changed back to normal?

There are more questions, but it takes a bit of knowledge to know what questions to ask.  So onward…..

Here’s the thing.  I haven’t been doing anything particularly well for the past few weeks.  I haven’t eaten particularly well.  I’ve missed Nanos for the last week or so.  I haven’t been walking at work like I should.  I haven’t been sleeping particularly well – interesting nightmares last night…  I’m not particularly happy, but I’m not particularly down either. In spite of all of that, I feel pretty good.  Pretty darn good.

This is the nature of fibromyalgia, the reason it’s so difficult to manage.  By all accounts, I should feel terrible this morning.  Why?  Because of Talenti coconut pecan chocolate chip gelato, which I consumed merrily last night just before bedtime.  Because I didn’t stretch or exercise at all yesterday.  I just flopped into bed and had nightmares all night about trying to escape from some house I was being held captive in – my captor turned out to be a very nice and polite, rug cleaning guy slightly reminiscent of the commandant in Bridge on the River Kwai.  I still jumped out the window with one shoe on.  It was snowy and uphill.  I should be groggy, stiff, sore… Okay, I admit to a stiff and sore back, but I’m feeling pretty darn good.

Now, next week when I’m sleeping better, eating better, exercising again – we’ll see if that pretty darn good can hold out.  It’s never a guarantee.  Doing all the right things is not a sure thing to feeling good.  And in this case doing all the wrong things is not a sure thing to feeling bad.

Here are some of the puzzle pieces.  There are more, but I’m still cataloging and have a pile more reading to do.  I was just turned down to be in a study about how changes in hormone levels can change other hormone levels.  In this case, they are studying the effect of estrogen and progesterone levels on growth hormone production.  Growth hormone production is a piece in the fibro puzzle, so I wanted to see what would happen if I participated.  Rejected…  BUT I’m heartened to know that there is a study about hormone levels affecting other hormone levels.  I’m not way off in right field without a baseball glove…. During football season.

And so today, I’m walking in to work like a 90-year-old woman with a limp.  I feel like I have a fever with a normal temperature.  I’m on sensory overload.  I don’t see things – they hit me in the face.  My ears are on their last legs – the slightest noise is painful and the constant relentless noise of normal life around me is a cacophonous nightmare.  My skin hurts.  I may have been scalped last night – my scalp hurts.  What’s up with that?  Inside my head hurts too.  My muscles are sore to the point of knotting up if I move wrong, and sometimes when I don’t move. My eyes are on a vacation from clear vision.  I have to check the bottom of my feet to see if Legos have been taped to them.  I have to remember to relax my shoulders or they creep up to cuddle with my ears.  Neck and back are stiff and sore.  I’m exhausted….

I had the best time this weekend.  I’m not regretting it in the least.  And I won’t regret it tomorrow either.

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…