It’s very good to have another continent and island chain join the conversation.  Welcome!

There is nothing better in the wintertime than Caribou hot chocolate.  It’s not just any hot chocolate; it’s Caribou dark hot chocolate with 2% milk and a shot of peppermint, lathered in fresh whipped cream.  It’s hot, creamy, luscious, and amazing.  The best comfort consumable in the world in sub zero temperatures.  Or when temps are in the teens.  Or twenties, or thirties, or up to 75 degrees Fahrenheit, but below zero it’s the best.

At the same time there was no better Ben & Jerry’s ice cream than Chunky Monkey.  Banana flavored ice cream, chunks of dark chocolate, and walnuts.  I say “was no better” because the walnuts are no longer whole walnuts.  It’s still darn good ice cream, but it just lost its edge when they switched over to chopped walnuts.  It’s more like “Almost Chunky Monkey” now.

These two ultimate comfort foods have one thing in common.  I had them BOTH yesterday. Caribou at about 3:00, and I shared a Chunky Monkey at about 8:00.  At about 1:00 AM, my brain was wide awake, my eyes couldn’t stay open, my legs were twitching, and I was pretty close to ready to run screaming around the house.  I didn’t.  I stayed calm, strapped on my CPAP machine and managed to get to sleep.  And promptly had very bizarre dreams all night.  They weren’t chocolate dreams, but they were chocolate induced with my mind still buzzing away while my body went into a coma.

People all over the world wake up, sip coffee – the caffeine delivery device of humanity – all the live-long day and then still go to sleep at night.  I always have to be reminded that I’m not one of those people and the effect of a dark hot chocolate is greater than a regular cup of coffee.  The fallout today isn’t too bad, and my gosh that hot chocolate and ice cream were amazing, even if the night was uncomfortable and the sleep was…bizarre.  Still, point made, I’ll stay away from the lusciousness now until I forget again and add to my list of Food Fails.

Finally, there’s a new page on the main website under “The Gravity Conundrum” called “Non-Extreme Exercise: Yoga” which discusses yoga and some of the possible benefits and the benefits I’ve had from it.  I’ll be moving on to swimming soon, but I’m not going to leave yoga completely.  I am more and more convinced that for myself – because I apparently have the attention span of a flea – several different types of exercise would be most beneficial simply because I get bored or I start to dread the same thing over and over again.  With membership at the DAHLC, I’ll be able to get yoga and Crossfit type groups, as well as access to rowing machines, and swimming.  It’s going to be the variety method.  Wish me luck.

Strengthening and flexibility.  While it is possible to look at these as two different things, they are really integral to each other.  For example, when I started the yoga “intervention” (as the instructor calls it) sitting on the floor was a problem for me.  I can get onto the floor, I can get up off the floor, but sitting on the floor and breathing, or worse, sitting on the floor in specific poses  made my hips actually lock in place so I couldn’t stay seated, but I couldn’t straighten my legs either.  The result was rolling on the floor in pain.  Very counterproductive.  The solution was to prop my legs up while sitting because first of all, I wasn’t flexible enough to have my knees on the floor, and secondly, I wasn’t strong enough to hold them up.  The strain of holding my muscles in position because I didn’t have the flexibility to relax them was what was causing my hips to lock.   Within the weeks I’ve been doing yoga, I have both increased flexibility and strengthened those muscles so I no longer have to prop my legs.  As an added benefit, this has decreased my bilateral trochanteric bursitis enough that I no longer feel like I need the regular cortisol shots I’ve been getting.  While I’ve exercised the muscles, as suggested by a physical therapist who did not want me to get the shots, it was the combination of both strengthening and increasing flexibility that has settled this very chronic, very painful condition down to something very manageable.  While bursitis and fibromyalgia are two completely different conditions, management may not be so different.

Nice to have you join the conversation!

Kinesiophobia is the fear of movement.  It’s not that simple, however.  What it really boils down to is a fear of the pain that movement can bring.  According to a study by Russek et al (see library) 72.9% of fibromyalgia patients are kinesiophobic.  The authors rightly understand the implications of kinesiophobia: the vicious cycle that perpetuates chronic pain, “…activity avoidance…leads to further physiological impairments such as decreased mobility, strength, and fitness; increased activity restriction reduces tolerance to activity and further compromises balance, leading to additional fear of movement.” While exploring the fear of movement in fibro patients, they also looked at functionality and determined that the people who participated in their study “report functional limitations typical of people over 75 years old.”  Their study focuses primarily on the psychological factors in this functional disability, pairing fibro with post-traumatic stress disorder, obsessive-compulsive personality disorder, and how vertigo psychologically increases the possibility of kinesiophobia, all of which conditions are present in many fibro patients.

The authors admit that their study cannot show which came first, kinesiophobia or fibromyalgia, and that their study has serious limitations because none of the patients were examined in person – the studies were completed by patients on line.  However, the study demonstrates strongly the most important aspect of fibromyalgia management: movement.  But not just movement, being psychologically comfortable with movement.  It is important for people to understand that pain does NOT equal injury.  We are taught from an early age that pain does indeed equal injury.  If it hurts, we kiss the boo-boo, get a band-aide, see a doctor.  For people with fibromyalgia, pain does NOT equal injury.  As soon as a person with fibromyalgia understands that, the psychological barriers against physical functionality start to come down.  When the barriers start to come down, the possibility of movement increases, and more movement ultimately means less pain, and thus the vicious cycle starts to unravel.  The pain won’t go away… fibromyalgia is not a strictly psychological phenomenon.  However, the suffering patients feel with fibromyalgia can be eased.

In an article discussing a study exploring yoga and meditation as a way to manage fibromyalgia symptoms, Janet Hennard (see library) mentions one of the pain responses people have is shallow breathing.  With yoga and meditation, patients learn to control their breathing, mindful breathing.  In the yoga sessions I’ve been taking, the instructor regularly tells us when to breathe, when to exhale, and our motions are coordinated with breathing – a yoga basic.  At the same time, she tells us to pick a sore place and to “breathe into” it.  I breathe into my hips a lot.  I understand the concept of oxygen circulating through the blood and reaching vital areas, so I understand the concept of breathing “into” an area of the body, but I think what we’re really doing it making ourselves conscious of specific pain points, the opposite of what I’ve been doing for several years.  I’ve been studiously ignoring pain points because when I focus on pain, it intensifies.  Instead yoga (and the meditative aspects of it) as a fibro management strategy tells us to focus on the pain and to breathe into it.

This got me thinking about subconscious reactions to pain. In high school, shortly after I started having chronic pain, my mom took me to a holistic doctor.  I don’t remember a lot about it except for one thing:  When I was having an initial consult with the doctor, he mentioned that he’d been watching me, waiting for me to breathe, and I wasn’t.  Of course I was breathing.  I was alive, wasn’t I?  But what he was focusing on was that I didn’t breathe deeply or regularly.  I still find myself holding my breath when I’m stressed.  At work I would regularly remind myself to breathe…. breathe….  When people around me are stressed, I remind them to breathe… breathe…  It helps stress to breathe into it.  It’s not a distant leap to think of breathing into pain points.  Mindful, deep breathing spreads oxygen through your body.  Allowing yourself to acknowledge pain points coordinates breathing with pain reduction.  I’m starting to understand that.  It’s not focusing on the “chronic widespread pain” that the commercials go on about, but about concentrating your breathing and controlling your pain focus.  It’s a compromise between obsessing over your pain and completely sweeping it under the carpet.  Is that called coping?

Reading about why yoga is considered to be beneficial to relieve fibro symptoms, I came across an article that looks not just at yoga but compares yoga to yoga plus massage therapy (specifically Tui Na, a Chinese “manipulation therapy”), see Da Silva et al in library.  For yoga (“relaxing yogic practice”), they indicate that practicing physical posture, breathing exercises, and relaxation techniques are probably what is beneficial. Seems very straightforward.  However, when they divided their study group so that half of them were only doing the relaxation yoga techniques and half were doing yoga plus massage therapy, things go awry.

The two groups had about the same results at the end of the 8-week study, with those also receiving massage therapy having slightly better results.  Upon followup, however, those with massage therapy had returned very closely to their original baseline pain range. Those without therapy had longer lasting benefit.  This goes against common sense to me. Massage is definitely beneficial – I’ll attest to that.  It was my first therapy when I was first officially diagnosed.  Yoga… I’m still trying to determine the benefit.  But looking at their results, it is very clear.  There is benefit for those with massage, but it is not lasting.

The authors conjecture that this is for one very simple reason.  The subjects became dependent on the massage therapy: “…massage may enhance a patient’s dependence, and if this approach [massage] is incorporated into the patient’s chronic pain behaviors, it may become disabling, because the patient will expect things to be done to him or her and not by him or her” [italics added].  The patients with massage therapy all expressed dissatisfaction at the end of the study.  They go on to mention the need to change patients’ “self-defeating beliefs.”

During the yoga sessions I’ve been attending, this is one of the elements that are addressed while we work out, “self-defeating beliefs.”  We are told to even focus on one problem area, and breathe into it.  Don’t suppress it, acknowledge it, and move on.  If we have thoughts like oh my gosh I think my hips are splitting in half, acknowledge those thoughts and move on.  Breathe into my hips.  The self-defeating beliefs, according to my personal yoga master, is what actually causes our suffering, because we pile negative thoughts on top of our pain.  I can acknowledge the common sense of this approach.

At the same time, I have to go back to the it’s-better-to-ignore-it philosophy too.  While negative thoughts are definitely something for people with fibromyalgia to combat, “self-defeating beliefs” takes it one step further, maybe too far.  There’s a difference.  I’ll have to work on figuring out how to explain that difference and why the phrase annoys me….

Think of a pinball machine.  For those of you too young to know the rock opera Tommy, go to Google.  Remember how the little steel ball bearings bounced all around and you couldn’t tell where it was going to go next so it was impossible to know when to make the flipper flappers flap instead of flip and the ball would end up going down the drain and the machine would commiserate or jeer at you, depending on if it was evil or nice?  I think I played pinball once.  For five seconds.  Lost all five balls in that time.

Thinking of the bumpers and the flipper flappers and the grooves in the game which made the ball seemingly randomly bounce around like a bat out of hell, those are confounding factors.  Confounders knock the predictable off track.  You’re pretty sure you know that the bowling ball is going straight at that head pin, but all the sudden it veers right into the gutter.  The spin you unconsciously put on the ball is the confounding factor.

In medicine, confounding factors can take on lots of forms.  One of the most well known confounder is diabetes, which can be a game changer for many other medical conditions.  It can make them unpredictable.  Fibromyalgia is, practically by definition, it’s own confounder.  There are so many variables that it becomes very difficult to understand what makes the symptoms better or worse.  If you don’t change anything in your management strategy, and all the sudden you have a flareup, you are left wondering why it happened?  It was probably a confounder.

The thing is, there can be confounders going the opposite way too.  For example, you change your management strategies for the worse, and you don’t have a flareup!  It’s rare, I admit, but it happens.  Here I sit at work eating a piece of pizza, a bag of Lays oven baked BBQ chips, and a chocolate pudding.  This is not a lunch of champions.  And I’ve been having a chocolate or vanilla pudding pretty close to every day for a couple weeks now.  I’m not pain free, but I’m not flaring either.  Is it the yoga?  Maybe, but the yoga still can hurt quite a bit even as my body gets used to it.  Is it happiness?  Maybe?  Yes, mind can dominate matter.  So the little steel ball bearing in my personal pinball machine is happily, randomly, and perhaps manically bouncing off the rubber bumpers.  Maybe the flipper flappers will work in my favor for once this time.

So here I am at the Dan Abraham Healthy Living Center waiting to have an orientation and tour.  Places like these sort of make me sit back and think, “do I really belong here?”  Everyone seems so fit.  They can sit in chairs with arms without bumping their hips.  I’m not jammed into my seat, but…  They can walk up and down the stairs without holding the rail in case their knee buckles.  They can sit in these chairs for an extended period of time and not have to stretch out to let their joints pop and crackle before they can start to walk. They don’t have that tell-tale stand up and hold their lower back for a moment, then straighten slowly… then move… forward…. but don’t let gravity get you going too fast or you won’t be able to stop and then there you are at the bottom of the stairs looking up at the ceiling thinking, “yep, that was the fast way.”  There’s no doubt I feel out of place and I’ll feel more out of place if I do join this haven of healthy living.  No doubt.  But I do belong here.  I’m not the only one struggling, and others here, despite the outward appearance have all their own struggles too.  Even the slimmest, fittest person in this place probably feels a little out of place now and then.

The fact is, moving is not going to get any easier.

Crossfit worked for a while.  The verdict on yoga is still out.  I’ve decided next step is swimming.  And so here I am preparing the way to cannonball into the pool and doggy paddle from end to end of the pool.   When I get tired of doggy paddling, I’ll froggy paddle, maybe just float, maybe run – I can run in a pool.   Do you suppose they’ll let me cannonball?  I better ask before I sign up.  Could be a deal breaker.