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.

I’m still working on the thyroid problem.  Remarkably, I found two articles, one from 2012 which abstract ended with “…maybe there is more than a hypothesis regarding the cause-effect relation between thyroid autoimmunity and the presence of [fibromyalgia], thus suggesting a hypothetical role of thyroid autoimmunity in [fibromyalgia] pathogenesis.”  In other words, the bodies of people with fibromyalgia are probably fighting thyroid hormone, which then causes fibromyalgia.  A second article is from 2004, yes, 12 years ago and 8 years prior to the other article.  Their abstract ended with “Our results suggest an association between [fibromyalgia] and thyroid autoimmunity” – in fact their odds ratio for a relationship between the two is 95% (2012, Bazzichi et al; 2004, Ribeiro and Proietti, see library later).

This is what I’m seeing over and over.  Not quite identical studies essentially looking at pretty close to identical questions about fibromyalgia, years apart, and then **poof** nothing.  I’ll keep looking, but honestly, my spirits are dropping a little.

Even if I could find something, how do I get a doctor to agree to testing and treatment?  It’s too late to become a doctor myself.  Why are the questions about fibromyalgia more intriguing to doctors than the answers?  Why isn’t the focus on treatment?  Why are the treatment options so…. Namby Pamby?  Okay, done feeling sorry for myself.  I’ll keep digging, keep reporting, and maybe one day I’ll know enough to sit down and have an intelligent conversation with someone open to talking with me about possible options beyond drugs and stretching.

Signed,
Cranky

That is a real word.  Pseudopseudohypoparathyroidism.  It’s an eyeful but fun to say out loud three times.  Did you know there are about 17,000 different thyroid conditions out there?  There is hypothyroidism, euthyroidism, hyperthyroidism, autoimmune thyroiditis, thyroid resistance, and all sorts of parathyroid problems.  The ones that seem to concern fibromyalgia patients are:

1. Hypothyroidism: essentially having discernable low levels of thyroid which can then be treated by boosting the levels.  The symptoms between hypothyroidism and fibromyalgia are very similar.
2. Euthyroidism: essentially having normal levels of thyroid.  That whole “within normal limits” thing.
3. Autoimmune thyroiditis: when the body decides thyroid is actually a threat and releases antibodies which destroys thyroid.  This is genetically passed on.  The antibodies can be tested for, and there is a fairly high percentage of fibro patients who test positive for the antibodies.
4. Thyroid resistance: essentially, there’s plenty of thyroid hormone, but the body doesn’t know what to do with it, also called “impaired sensitivity to thyroid hormone.”  Again, there have been studies which indicate a fairly high prevalence of this in fibro patients.

I haven’t been able to find (yet) a solid discussion of the consequences of untreated abnormalities like autoimmune thyroiditis and thyroid resistance, but it is possible (according to Garrison et al) to have “multiple hormone resistances,” and to fix one hormone resistance (like thyroid resistance) can cause a cascade effect on other out-of-balance hormones.  Since there are so MANY hormones and chemicals out of balance in fibro patients (yeah, yeah, I haven’t gotten the chart on line yet), I don’t quite understand the reluctance to continue this line of inquiry.  It’s kind of bothering me, so onward I trudge trying to find someone looking at this line of thought.  Besides me.

The puzzle pieces are starting to fit together.  Unfortunately, if fibromyalgia were a puzzle, it wouldn’t have a border, it would be printed on both sides, and you may need a scissors to make some of the pieces actually fit.  That said, some of the pieces are falling together.

Two ideas for “cures” have intrigued me, and now they seem to be coming together.  First, the thyroid angle. There is a theory that seems to have been dismissed that people with fibromyalgia are thyroid deficient (type I – actually having a low thyroid level) or thyroid resistant (type II – good thyroid levels but not processed properly and a boost is needed).  At the same time, there is the theory that fibromyalgia is actually part of an infection process.  These two theories meld into one with Garrison and Breeding (soon to be in library), who says that fibromyalgia can be cured with thyroid treatment and possibly with antibiotics.  It sounds a bit like some patients could be prevented full-on fibromyalgia by identifying the infection process and treating it right away.  Others can be “cured” by thyroid treatment.  I have to read more, but there are some very interesting possibilities with this.  First, I need to find out what the consequences of untreated hypothyroidism are.  Do they mirror fibromyalgia as much as the symptoms do?  Second, I need to find out why this really solid theory (tested by John Lowe with at least two studies) has been completely discounted and swept under the rug.

Garrison’s article is from 2003.  Lowe’s latest article was from 2011, shortly before he died.  Garrison is also dead, and I can’t seem to find anyone (yet) who is carrying on with their work/theories.  It’s very frustrating.  But it’s early yet.  I’ll keep plugging away and grouping pieces together.  Sometimes there’s a happy accident and an impossible puzzle comes together.

“Why do fibromyalgia researchers in general ignore the obvious?  Through more than two decades of involvement in this field, I have learned a list of disreputable reasons: prejudice against the possibility of causative thyroid connection, ignorance of basic and clinical thyroidology, egotistical pursuit of failed pet theories, and corruption through acceptance of judgement-forming grants and other perks from Big Pharma to develop drugs for fibromyalgia that are palliative at best and harmful at worst.”  Dr. John C.Lowe

There are more than 9000 articles about fibromyalgia on PubMed alone.  Most of these are characterizing, describing, categorizing, or theorizing about fibromyalgia.  They all end with the words, “further studies are needed…”  Out of all this morass, I have found only one assertion of a “cure,” and that is from Dr. Lowe.  He says that fibromyalgia is caused by low thyroid levels, inadequate thyroid regulation.  The kicker is that for people with fibromyalgia, their thyroid levels will test as normal.  It’s something I’ve asked – is it possible that higher than normal levels of hormones/chemicals are necessary for some people and could this be connected to fibromyalgia.  My symptoms have caused more than one doctor to test my thyroid levels – always normal and no further treatment.  However, if there are certain classes of drugs that would require me to take higher doses to be effective, why wouldn’t that carry over to hormones?

I wrote an email to Dr. Lowe yesterday.  He died in 2011.  So he probably didn’t get it.  Maybe it’s time to track down his colleagues, look for a study connecting inadequate thyroid regulation and fibromyalgia.  Wish me luck.

When to go to the doctor?  Is it worth going to the doctor?  What exactly is the point of going to the doctor?  How do you choose the right time to be a burden on the healthcare system?

It is safe to say that 99 times out of 100, doctors will say, “It’s just something you’re going to have to get used to” or “There really isn’t anything we can do about it” or “There is no treatment” or “Take a pill.”  The last one isn’t quite a quote, but likelihood is that some sort of pain medication is offered in lieu of a way to “cure” a pain.  The rest of the time, the doctor will say, “Let’s just be sure we’re not looking at x, y, or z.  Let’s do some imaging.”  Imaging is good, because let’s face it, as people with fibromyalgia get older, there is a good likelihood that at some point there will be something other than fibromyalgia going on that can be treated.  It’s good to get baselines established.  But once those baselines are established, and a fibromyalgia diagnosis is set, one of the most difficult things to do is to let go, forget about going to the doctor, setting your mind to remembering aching is not an injury, move, move a little more, and then move again.

There are dangers to this mindset.  Sometimes, the pain isn’t fibromyalgia.  The sharp, stabbing pains I felt in my rib cage were massive pulmonary emboli – my near-fatal episode.  Not fibromyalgia.  After that, I have a rule.  When I have a new, previously unexperienced symptom – for example, the intense nerve pain I am having in my foot right now – I go to the doctor, fully expecting to be told there’s nothing wrong with the nerves in my foot, that I don’t have a new rheumatic process happening, that I’ll just need to get used to it or wait for it to fade.  I’ve told my doctors, a new resident every three years, that’s what I will do.  If it’s new, they’ll see me.  I can generally figure out new pain, whether it’s actually new or a developing stage of fibromyalgia.  I wait a reasonable time, then I’ll go in and make sure it’s not something else.  For example, when severe pelvic pains started – ultrasounds and other imaging later, I could be assured this was not something dangerous, forget about it.  Now when it comes and goes I just wait it out.  No problems.

Personally, this works for me.  This works for my doctors.  They know when they see me that I have a concern that needs to be addressed and after it is addressed, I’ll go away.  It seems to be a pretty good balance between being a burden and being responsible for my health.  I’ll wait to go in to the doctor, though, for my foot.  It’s only been a few days.

There’s not much more annoying than getting lapped when you’re out for a vigorous walk, especially when that person isn’t working very hard.  Or at least gives off the casual, “I’m not working very hard” aura while zipping by.  It would be better if at least they were unconsciously humming “Staying alive, staying alive, ah, ah, ah, ah, staying aliiiiive….”

Walking is a good way to manage lower levels of pain for people with fibromyalgia.  That’s possibly the one thing everyone agrees on.  It’s challenging though.  The pain relief is cumulative.  You can walk for a couple miles and not feel a darn bit better (probably worse).  But walk a couple miles a day for a few weeks, and the lower level pains will probably be reduced.  Great, but it’s hard to remember that goal when it takes so long to kick in.

It’s likely that speed-walking would have faster benefits for people with fibro.  As I sit here after my lunchtime walk (today 1.2 miles) and my back is continuing to spasm and my feet and hands are swollen and hot, I’m cranky and a little sweaty, and I still feel a lot like I have flu aches – I’m ready to crawl under my desk and sleep – I realize one very important thing.  Last night, after I rowed about 2600 meters and lifted about 17,000 pounds, my muscles were sore immediately after working out, but my hands and feet were not swollen and I didn’t feel like I was coming down with the flu (although I was sweating like a pig that was tossed in a hot lake).  My hands and feet weren’t swollen today until I went for my little walk (and getting lapped).  I’m back to wondering if light exercise is more detrimental than helpful, while extreme exercise (ironically) is more beneficial than detrimental.  If I could speed up the walking, increase the length of my stride, essentially run without running, would that be better in the short term?  And as always – WHY?