Possibly the biggest aspect of fibromyalgia that gets doctors scratching their heads is the incredible variety of fibromyalgia patients.  As Auvinet et al (see library – soon) say, fibromyalgia patients “do not constitute a homogeneous group.”  Like I’ve said before, what works for one patient may not work for another.  What works for one patient one day may not work the next week for the same patient.  It’s very frustrating for both doctors and patients, so doctors tend to look at ways to classify patients, to identify subgroups in order to be able to treat more people more effectively and to create some standardization in treatment options to avoid unnecessary and possible harmful treatments.  All well and good, but every study trying to identify subgroups has used different criteria.  It seems like they need to decide on the most proper criteria before identifying the subgroups.  It’s just a mishmash of non-information out there.

The latest that I read (Auvinet et al) used gait markers (the way patients walked) to identify subgroups, looking at stride frequency, stride regularity, and cranio-caudal power, which is how they look at “kinesia,” which simply means movement, as far as I can tell.  And they did identify a few subgroups by looking at the way patients walk.  Looking at stride regularity, they found a set of patients who had lower functionality and coping mechanisms, and higher tendency to catastrophization and mood disorders.  Looking at stride frequency they identified another group with normal stride frequency, low pain, and although higher in terms of activity, a tendency for hyperkinesia (which I think is muscle spasms rather than hyperactivity).  Looking at the cranio-caudal power, this group correlated to pain.  Actually these are only a few subsets they identified.  I’m not sure how useful these subsets have proven to be, especially since the article is from 2011 and I’m not finding a lot relating gait with fibromyalgia.  However, Auvinet et al did note that improving gait in one of the subsets then improved symptoms.  That seems pretty relevant.  Again, nothing about it since (so far – still looking).

There is another study (Goes et al) that looked at the gait characteristics in middle aged women with fibromyalgia and compared them to elderly women without fibromyalgia.  Yep, you guessed it.  We walk like old women.  Our stride length, walking speed, and range of motion in our legs, hips, etc, are similar to elderly women.  They identified it as a “premature aging pattern.”  I’ve never fought getting older, but it would be nice to age at the right rate!  Golly!

Thank goodness for Leavitt and Katz (see library – later, I’m behind).  It’s so seldom I hear a definitive yes or no, and they supply one!  No, “fibrofog” (possibly my newest favorite word) in NOT the start of dementia of any sort.  No, Alzheimer’s is not setting in.  Forgetting words or where I am or why I am there is not the start of something horrible. According to Leavitt and Katz’s study, the “encoding mechanisms” for people with fibromyalgia are normal.  In other words, we can recall events and stories that are actually encoded into the brain.  So what is the cause for cognitive issues?  I dunno.  I’ll keep looking, but I think it’s out and out distraction.  We get overwhelmed with sensations easily.  If there is a lot of noise or visual “noise,” that is when I get “lost.”  I’m sure it’s the same with solid pain.  When you can only think about how much you hurt, other things slip away.  I’m just relieved to have found the answer to one nagging question.  It doesn’t mean tomorrow or next week I won’t find something directly contradicting this study, but today I’m happy to have seen this one.

The other day I couldn’t remember what the name of the town that Jesse James tried to hold up a bank and got turned away by the ordinary folks.  I could remember the James and Younger gang, that Jesse got away, that the incident commenced the downfall of Jesse James and in a way the western bank robber era, Jesse’s confederate background, how he died… I could even visualize in detail the pictures I saw of Jesse and his gang, both dead and alive.  I could remember St. Olaf, I could visualize the exit off Highway 52.  Everything but the name.  It was gone.  Completely.  Until I drove up to St. Paul to see my son, and I drove past Northfield.  Northfield.  Northfield.  It helps to repeat things.

Not being able to put your finger on a fact or a name or place – it’s normal.  It happens everyday.  You walk into a room and you think, “Why the heck did I come in here?”  Usually looking around the room spurs your memory, and you get on with your business.  It happens at my computer – I start to do something and then don’t remember why I went into this application or on that website.  That’s distraction.  Multitasking.  Thinking about too much while trying to function.

But there’s something disconcerting about losing something so well known as the name of a town an hour away.  The more this happens (and yes, I lose words all the time), the more I understand the frustration and bewilderment people with Alzheimer’s and other dementia-type syndromes must have.  It’s a reason to keep pushing on my quest for answers.  More and more, the evidence is pointing toward neurological causes of fibromyalgia.  It all circles around, present studies repeating past studies but no one coming up with anything definitive….

Today is D-Day.  Back to Crossfit I go.  My fellow Nanos have been at it for the last month, and I’ve been not exercising and eating poorly.  It’s going to be a bit of a disaster, but if I avoid swearing out loud and don’t melt in my own sweat, it will be okay.  I can do this.  My fibro attack is pretty well over, although allergic reactions are still hitting hard, which does trigger pain.  I started walking two miles a day at lunch time, so that will hopefully slow down the reaction to allergic reactions.  Yikes, I’m just a bundle of symptoms and reactions and reactions to symptoms and reactions to reactions.  It’s okay.  I have proven to myself that exercising (more than lightly and a bit more than briskly) does help me feel better.  The problems I was having with my hips (and therefore legs and back) were not exercise related.  In fact, exercising slowed down hip pain so I was able to hold off on shots longer than I have for the last couple of years.

If it sounds like I’m talking myself into going back to Crossfit tonight, I am.  Just because something’s good for you doesn’t mean you like to do it.  I can’t say I enjoy exercising, although extreme exercise is much more interesting and fun than the piddly little light exercises they recommend for fibromyalgia.  However, it is, still, a form of torture for me.  Self-inflicted torture.

I just read an article (not in the library yet, Waylonis, et al) that indicates that people with fibromyalgia are far less likely to have been good in sports as children, but interestingly, more likely to be in sports as an adult.  This is an older article from 1991, but at that time, 17.1% of fibro patients to 54.4% of healthy group were in sports as children, but 64.4% of fibro patient to 39.6% of healthy group were in sports as adults.  That’s very interesting to me.  The percentage of both groups participating in regular exercise as adults is nearly identical, 53.1% to 53.3%.

So wish me luck.  I’m going to need it.  I’ve promised myself a gelato next week over Memorial Day weekend as incentive.  Coconut chocolate chip.  Or Southern Pecan.  Or Mediterranean Mint.  Eyes on the prize, right?

A new question:  Is there a correlation between allergies and chronic pain, or onset of fibromyalgia, or trigger of fibromyalgia attack?  I read one article that indicates that nicotine suppresses the body’s natural pain killers (see Bokarewa in the library; “Nicotine – the Theory” under the Sorcerer’s Cauldron), and therefore people with fibromyalgia should definitely not smoke.  This seems to answer my question of why I was having such a downward turn in my previous workspace where I was exposed to consistent third-hand smoke.  Add to that an allergy to tobacco (genetic testing shows I can’t metabolize nicotine), and it makes sense.  Leaving that office has done a world of good in terms of physical pain.  I’ve done other things to help, reducing stress, addressing hip pain, etc (see other blogs), but there is a definite correlation between taking myself out of a toxic environment and reduction of pain.  I was doing well.  Until this week.

I’m taking care of a friend’s dog this week so am uprooted from my own little litter box to someone else’s.  And I’m reacting to something.  I feel exactly the same way as when I was in my last office.  It’s not just allergies (probably to dust/dirt – it’s a semi-rural setting with horses, dirt road, etc, that make their way into the house), but also a return of the fibro pain.  I can feel it in my hands (yes, my flip-em-the-bird finger is acting up), shoulders, legs, neck, etc.  I’ve gone from remission at the beginning of the week when I first arrived to new onset by the end of the week.  In addition, my head is foggy – clarity of thinking has decreased.  The inability to sit down and read is probably due to the allergic reaction – eye pain and dryness.

Since this is a completely different type of allergy that seems to be triggering fibro pain, I’m wondering what the correlation between allergies and fibro is and whether there have been studies on it.  I’m going to have to check it out.

A quick update on the fibro attack that started about a month and a half ago.  Bottom line: It’s on its way out.  But there are caveats:

1. I’ve stopped exercise.  There were three reasons to stop: 1) hip pain – I’ve gotten injections that are pretty well healed; 2) fibro pain – this has abated, but my muscles had turned to lead and I was having difficulty with basic everyday functions; 3) lower back pain – this is the last bit that I’m waiting on to start back on my extreme exercise experiment NEXT WEEK.
2. Food has once more become the enemy.  I blame not exercising.  When I’m exercising it’s a lot easier to eat better, and it eliminates cravings.  So I’ve gained a bit of girth back.  But I’m not too concerned.  I’ll pull it together.
3. Stress reduction has gone very well.  While I miss my last post a lot, the environment here is peaceful and stress-free.  I need that for awhile.  The stress of leaving and of entering a new place has abated.  My brain is relaxing and concentration is better.

Those are the three things I need to continue to work on.  A fourth that I knew was a problem at my last workplace, but has not been part of the equation since, are outside factors, noise and allergic reactions to chemicals.  On the whole, this will be okay, but I am out of my home environment for a short time while I help a friend out, and there are a few problems in this temporary living space that will be interesting to watch develop – or hopefully not develop.  Headaches are again a factor, as is coughing and lung tightness, and eye discomfort.  The same symptoms I was having in the last workplace.  It will be difficult to gauge any increase in pain that may be related to these stressors since I’m on the tail end of a pretty severe attack, but that’s the next step.  I feel like I’m my own guinea pig.  Except I’m not fluffy.

Another “definition” of fibromyalgia that I’ve run across is “a disorder of perceptual organization” (see Dohrenbusch et al in library) from 1997.  In other words, as the theory goes, fibromyalgia patients’ hypersensitivity is not restricted to pain.  Furthermore, this study suggests that fibromyalgia pain (which they call “generalized pain”) makes people with fibromyalgia more acutely aware of noise (and other outside stimuli) than “normal” people.

Fibromyalgia aside, if two people are put in the exact same environment with the exact same stimuli (noise, temperature, etc), they will not have the exact same experience. Sensation is subjective.  However, the connection between the perception of pain sensitizing people to outside stimuli, while commonsensical, is significant for understanding the downward spiral people with fibromyalgia can find themselves in.  I would be willing to hypothesize that the correlation goes both ways.  While pain can increase sensitivity to outside stimuli, outside stimuli can increase sensitivity to pain.

On a personal level, I’ve noticed over the last few years my own sensitivity to outside stimuli, in particular noise and smells, has taken a free fall into hypersensitivity.  While I’m certain that the hypersensitivity has increased my “generalized pain” simply because I can go from comfortable to significant pain within minutes of being in a noxious environment, I wonder why there has been such an increase lately, and if this is a shared experience for people with fibromyalgia.  The questions I have are:

1. Does sensitivity increase with the amount of time you are affected by fibromyalgia?  In other words will a person who has had fibromyalgia for 5 years be less affected by outside influences than a person who has had fibro for 25 years?
2. Does sensitivity increase with age?  If the person who has had fibromyalgia for 5 years is 75 years old and the person who has had fibro for 25 years is 50 years old, will their sensitivity be about the same?
3. Does sensitivity increase with extended exposure to noxious stimuli?  According to another study, Bell et al (see library), this may be the case, not just for increasing pain but for actually developing a pain disorder.

So many questions, so many studies, so many articles, so few answers………..

There is a generalized hypervigilance hypothesis, or GHH for short, that says that “hypervigilance leads to…perceptual amplification” (see Hollins & Walters in library).  This hypothesis was NOT originally put forward for people with fibromyalgia, but it is something fibro patients need to take into account.

Essentially, the more you focus on your physical self, the more you’ll feel.  Hollins & Walters did an interesting experiment where patients focused on themselves by counting their own breaths, heartbeats, and even blinks.  Afterwards, they did a pressure sensitivity test.  The control group, who had counted lights and sounds which really focused their senses away from their bodies, found the intensity and “unpleasantness” of the pressure test significantly less than the experimental group.  The two groups were assessed for anxiety and catastrophizing (my current favorite word) before the test and were equal.

This makes perfect sense to me.  One of the most difficult things about fibromyalgia is to forget about it.  There are times it’s impossible to forget about it, but the further back you can push the pain in your head, the less it hurts.  It doesn’t mean when you do feel pain that it’s all in your head, but the intensity can be reduced by ignoring it.  Looking at the experiment, both groups felt the same pressure, the pressure was there – that is undeniable, but their perception of the pressure was different.  I think one of the management strategies for fibromyalgia is to reduce intensity by reducing hypervigilance.  Not that everyone with fibromyalgia is hypervigilant, but it’s like when you were sitting in the backseat of the car with your brother on a long roadtrip vacation, and he waves his hands in front of your face just millimeters from your eyes and nose and mouth, but he’s not touching you!  Your mind reacts to that stimulus that your body doesn’t feel.  When your body actually does feel something your mind can take it that one (or two or 200) steps farther.

It’s a great word, isn’t it?  Catastrophizing.  We all do it everyday.  One of the reasons that old horror films that don’t show any blood and guts or death can be so effective is because of humans’ tendency to catastrophize.  We can always imagine worse than reality.  Movies used to know that.  Now we are given exponentially raised shock value in movies just to get us to raise an eyebrow.  It’s because we don’t have to catastrophize at movies anymore – we can see it, it’s there, it’s not that bad.  Just, you know… red.

In health care, catastrophizing can lead to freezing.  People with fibromyalgia can grow to dread what could happen so much, we can imagine so vividly what might be, that we get stuck into a safe zone, and when we accidentally (or through a moment of physical defiance) stray from what’s safe, we can become like cats in a tree.  Really, just like a cat in a tree.  Literally.

A few years ago, my office decided to take an office picture outside near a tall wall with the name of our institute on it.  First one younger, athletic woman hops up on the wall to sit for the picture.  Pretty soon, others were being hoisted, pulled, boosted up onto the wall.  I was one of the them.  It wasn’t easy, but I was pretty proud to be up there.  In the meantime, the sensible people my age were on the ground looking up at us with a “you’re gonna regret this” grin.  Picture taken, and the young and fleet of foot started jumping off the wall.  I suddenly realized how HIGH it was.

I’m not a fan of heights anyway, but I kept seeing in my head my ankles snapping when I hit the ground.  If not snapping then spraining.  In my head I was hurting my knees, my back, hips, all the way up.  Whiplash.  It wasn’t a strong possibility – it was going to happen.  I froze.  I laughed, but I froze.  I couldn’t get down.  I told people to stop pulling me down, I’d fall on them and squash them, but in my mind, I could hear the bones in my legs breaking.  To my horror, I was the last person on the wall and there was a crowd of non-officemates gathered on the sidewalk with their phones out taking videos.  Meow.

Finally, I rolled over on my belly and nudged myself down off the wall.  Of course I later saw a picture of how large my butt really was up there on the wall, but at least I’m no longer up there.  The people with their phones wandered away.  Yes, I continued laughing the whole time.  No, I didn’t snap an ankle, but I also didn’t jump.

That, folks, is catastrophizing.

One of the things we hear about all the time in healthcare is the financial burden of disease. Stay healthy so you’re not a burden.  People shouldn’t be obese or they’ll be a burden on the healthcare system with comorbidities like diabetes, etc etc.  Industries have blossomed overnight from society being told, stay healthy so you’re not a burden.  While I agree with the idea of being healthy – who can argue with that? – there is something underlying this line of thought that’s a little disturbing.

There becomes an “us” and “them” mentality.  Insurance companies already deny healthcare to people who do not live up to their standards.  For example, I spoke to a patient who was unable to get a liver transplant because insurance would not cover it.  Why?  Because he was an alcoholic.  This is an extreme case. However, I can eventually see (as the insurance companies run amok) the same reasoning applying to people with chronic conditions, such as obesity or fibromyalgia – or old age.  Medicare payments don’t cover health costs for the elderly, and supplemental insurance can be fantastically expensive. Will we reach the point of becoming a pay-as-you-go society for people who fall into a chronic condition category – if you can afford healthcare you can have it?

In looking at the financial burden on the healthcare system for fibromyalgia patients, I was surprised to find out that the greatest financial burden in fibromyalgia is from indirect costs, not healthcare system costs.  These are employment-related: losses in productivity, reduced work hours, absenteeism, disability payments, unemployment payments, and early retirement (see Skaer et al).  In addition, indirect costs to patients themselves are related to non-healthcare setting care expenses, people being paid to help with household and personal care, people coming to help but not being paid.  Obviously, putting 2% to 4.7% of the population back on its feet would significantly reduce these costs.

In the meantime, I watch commercials for medications and vitamins and supplements that promise everything but immortality (except in the quiet auctioneer voice at the end when death is threatened) which play off everyone’s fears of being useless and a burden and listen to the outcry against people who are a “burden” on society and just hope.  Hope for what? I’m not sure.