Anyone who knows me well just spit their coffee out when they saw the title of this post. My track record is less than stellar.  Whether the lack of stellarliness is due to fibro or my own bullheadedness, I have no idea.  But fibromyalgia has been in play throughout my rather pathetic love life, and since there are a lot of people out there wondering how to deal with relationships while dealing with fibro (not a question I can actually answer, btw), and since I spent the large part of this last weekend making room in my home for the man in my life to join me there, it’s something I should probably reflect on.

I’ve been married and divorced twice.  Neither were “good” marriages.  There wasn’t a joining of forces, so to speak. The first was a case of friends that just shouldn’t have gotten together.  I’m still a little unsure of what either of our motives in getting married were.  It produced a wonderful son who has grown to be a wonderful man, so I forgive myself for that one. The second marriage was a case of me first of all not being willing to listen to warning bells and secondly not believing I was worth better when I started hearing them. I put my son through that marriage, something I still haven’t forgiven myself for.  He survived, however, and thrived, and I – after several years of therapy – have been able to put the abuse behind me.

My second-ex never hit me, although I think he came very close many times. He verbally and emotionally assaulted me and tore my self-esteem into a pretty limp puddle on the floor. It was during this marriage that the fibro really reared its ugly head.  I have had problems with pain since I was 15, but this is when the pain drove me to the doctor.  I was sure I had a rheumatic process, but I didn’t. Unfortunately, because I was so withered, I stayed in that relationship 10 years, and each year I sunk lower and the pain increased.  It wasn’t until I saw X2 confronting my son both verbally and physically that I was able to wake up and pull myself and my son out of the situation.

The delay in extracting myself and being able to protect my son was due in a large part to fibro, which wasn’t officially diagnosed until a few years after I got out. I was doing a lot of things during that marriage – getting my Master’s degree, helping my parents with their business, teaching. My limited energy resources were expended completely every day, so I never felt like I did enough or was enough – I was always inadequate.  I still struggle against those feelings, but X2 preyed on those feelings, encouraged those feelings, fed those feelings. In the meantime, pain levels were on the rise as was my weight.  I gained 75 pounds in about five years.

After I extracted myself from X2, I locked myself up in my home and considered putting a sign up outside declaring my home the “Nunnery.” For 15 years, I closed myself off from men and friends.  I didn’t go anywhere where I may accidentally meet anyone, and my demeanor stopped accidental meetings in their tracks.  Until about 4 years ago.  A friend – at work, because I had few outside of work – talked me into going on a dating website. You’re all groaning, but it worked.  I had about 45 first dates in almost 4 years. There was no way I was going to fall into another bad situation, so I kept plugging away, a bit horrified, a bit encouraged, very discouraged most of the time.  And then just as I was going to pull the plug on the whole thing, I came across my Terry.

I didn’t know what it was actually like being treated well.  He has shown me. I’m hopeful for the first time probably in my whole life, and we are joining our lives together, slowly, carefully, and happily.  Do I still have pain? Yup, even when I’m happy.  Is it going to affect this relationship? I don’t think so.  I hope not.  This relationship is founded on firmer footing. It’s not about how much can I do for him.  It’s about how much can we do for each other.  It’s about mindfulness, remembering what I need to do for myself, and knowing it’s okay.

I found an article by a researcher in Spain (see Ortega in the library) which discusses the use of exercise as medicine and a method to avoid taking multiple medications for people with inflammatory and even infectious diseases.  It’s going to take a closer look, but on first glance, it’s very interesting.

What he’s saying essentially, and I apologize for not being able to break all his words down into real words, is that exercise reduces stress hormones and inflammatory cytokines.  He calls it the “Bioregulatory Effect of Exercise.”  Not only can it reduce the stuff that causes chronic swelling, it stimulates the body’s defenses against infections.  He talks even a little bit about exercise as an immunization.  In short he talks about how exercise can achieve a balance between pro- and anti-inflammatory responses from the body.

Since fibromyalgia deals with imbalances in hormones and chemistry, this is very interesting.  Ortega talks about cytokines, hormones, and neurotransmitters (all out of whack in fibro folk).  He also talks specifically about “polymedication,” something people with fibro definitely deal with, taking multiple medications, often taking one to counteract side effects from another, and claims that exercise can be seen as a “polypill” eliminating the need for multiple medications.

One of the things I wonder about a lot is how much medications contribute the feeling of unwellness for people with fibro.  Not only do medications so often come with side effects, which add to discomfort, there is a psychological factor in taking medications.  If you’re taking a med, you must be unwell, right?  If you’re exercising regularly, you must be well, right? It seems like it would be such a positive reinforcement in the mind of someone who struggles so hard everyday.

This article doesn’t go into that aspect of exercise as medicine, he looks specifically at the physiological impact of exercise, what it does to hormones and chemicals and the immune system.  Very fascinating.

I will say, however, that I have been exercising twice or so a week for over a year, with varying success.  While exercising, my body was not able to fight off viruses, especially this last winter when I was in a yoga program.  That does not invalidate his ideas, however.  I need to read closer to see what exercises he suggests, what levels of exercise, and what duration.  There are a lot of factors, and as always we’re all different.  However, IF exercise paves the way for the reduction of medications (not looking to eliminate all meds), it seems like that would be a huge benefit.

This morning when I woke up, the first thing I noticed (after noting that I really didn’t want to wake up) was that my hands were stiff, sore, swollen.  The second thing I noticed was that I had a hard time raising my arms.  Driving to work was by thumb – hands resting on my lap.  Sitting at my desk on the computer all day didn’t do anything helpful for the situation.  By the end of the day, my hands were visibly swollen with small puffy patches. My elbows had joined in the fun. My biceps and shoulders weren’t pulling their weight. Now, if I hold still long enough, my hands go to sleep while it feels like nerves and muscles in my arms are getting pinched.  As my shoulders stiffen, my neck stiffens, and a headache is joining in the game.  My eyes are getting blurry as the headache gets worse.  It’s a typical on-the-bad-side day. I’ll write this, crawl into bed, and go to sleep.  Sleep will help.

Days like this, however, are the days that fibro patients should be tested. This is the day to check my thyroid levels, my mast cells, melatonin, insulin-like growth hormone, and all the other 30 some hormones/chemicals that are out of balance in fibro patients. Now is when MRIs of my brain should be taken. Now is when my balance and cognitive function should be tested. And then tomorrow when I’m feeling better, they should all be tested again and compared.

Before new techniques were developed, when cardiologists wanted to do ablations for atrial fibrillation (simplistic explanation: burning paths inside the heart to guide it into a regular rhythm), they had to wait until the patient went into atrial fibrillation and then rush the patient into the procedure room and do the ablation.  Ablations weren’t effective without targeting the right place at the right time.  I’d argue that studying fibromyalgia is the same.  I wonder if the conditions that cause fibro don’t wax and wane with the symptoms.  I’d love to see a study that looks at fibro that way.  Instead, conclusions are drawn without knowing that bit.  Maybe fluctuating hormone/chemical levels is the reason for fibro’s unpredictability?  I’ll have to look for studies that may have looked at this.  I haven’t accidentally tripped over any.

Brick walls can be lovely depending on the masoner and the architect. For people with fibro, brick walls are just something we throw ourselves against when we want to do something fun. I tried to define/describe fibro flu a few days ago, but this is different.  The brick wall (at least my brick wall) is really the draining of every drop of energy from my body.  There is so little energy left that the pain – still present – is muted, indistinct. There aren’t sharp pains. Imagine lying between two heavy mattresses, the weight holding you in one place, pressing the breath out of your lungs, legs and arms immobilized. If you’re able to get up and walk around, after a few steps you’re out of breath, maybe with heart palpitations.  I suspect atrial fibrillation – I have paroxysmal AF which brings on shortness of breath and fatigue all by itself.

Last week I had my swim lesson on Tuesday.  Usually I would have taken a day off and swam again on Thursday.  Instead I went swimming on Wednesday – two nights in a row.  I had difficulty swimming across the pool on Wednesday night.  Thursday morning, I woke up confused about what day it was, what time it was, if I was late for work. I stumbled to work.  On Thursday night, I came home from work, went out to dinner, came home and washed dishes (no dishwasher – I need to talk with Santa).  Three nights of activity was enough to slam me against the wall.  Thursday night I crawled into my bedroom, laid down on my side and couldn’t move. I couldn’t clench a fist or stretch my foot.  I slept in the same position all night, got up the next day and went to work in a fog. I was dancing on the brick wall that whole day.

A good night’s sleep usually picks me up and puts me back on my feet. The brick wall is simply fatigue. Fatigue on steroids.

A study by Rosello et al measured the startle eyeblink reflex, heart rate response, heart rate variability, and EEG waves in both fibromyalgia patients and a healthy control group while they looked at video clips of unpleasant, pleasant, and neutral environments, a walk in a park. They had hypothesized that fibro patients would see all three environments in a more negative light (“more unpleasant and arousing”), that the startle eyeblink reflex would be greater in the fibro patients with an increased heart rate response.  In other words, they expected a greater reaction with both physical reactions and affective (mood) reactions.

What they discovered, however, was that while fibro patients rated all the video environments as more negative than healthy subjects, their physical reactions to these stimuli weren’t as expected.  First of all, the startle eyeblink reflex was lower in fibro patients: “…patients with FM exhibited an abnormal reflex inhibition to all virtual environments…”  Fibro patients’ reactions to both pleasant and unpleasant stimuli was muted.  Not only that, their heart rate response to stimuli was also reduced.  The authors explained this by pointing out that the parts of the brain affected by fibro (the amygdala, anterior cingulate cortex, and periaqueductal gray) were also involved in the startle reflex, indicating that there could be some “functional disruption of these network circuits.”

We’re back to brain damage.  However, the authors are very careful to point out that one of the reasons that fibro patients have a lower startle reflex is because our focus is on the unpleasantness of the situation.  It’s a matter of concentration. We’re concentrating on the negative so much that we no longer react to it “normally.” This explanation falls neatly into the way fibro patients are “characterized” by the authors:

• Abnormal affective processing including impaired affect (our moods are off kilter)
• Increased emotional avoidance
• Catastrophizing
• Alexithymia (an inability to understand or recognize emotions)
• Having an “attentional bias toward negative information”
• Hypervigilance in our moods – how we feel
• “An inhibition of information processing”

I’m not crazy about this list, but to complain about it is off point.  The bottom line of the authors’ discussion is that there may be “abnormal brain functioning and autonomic cardiovascular control during affective processing” as well as “peculiarities in the regulation of cortical and attentional arousal.”  Brain damage.  But has the chicken clucked or the egg cracked?  Which came first?  My biggest question, however, is:

Does the way researchers characterize fibro patients affect the way they do their research if not the outcomes of their research?

With fibromyalgia usually comes “fibro flu.”  I didn’t coin the term.  I didn’t even really think about it until I was reading an article about how people feel when they have fibromyalgia and flu-like symptoms came up.  After having the flu in January, however, it became more and more clear that there are similarities between fibro pain and good old fashioned flu.

For me (because we all experience fibromyalgia differently), I get fibro flu after a long, hard day and I’m completely exhausted.  The worst passes after a good night’s sleep, but it can linger, just like the flu, for several days if I don’t get enough rest when it hits.  The symptoms are the exact same ones I feel when my temperature goes above 99 degrees:

• Feels like my skin is peeling off
• Headache with severe eye pain
• Joints feel twisted and swollen
• My scalp hurts – if the wind blows, my hair hurts
• Severe back pain
• Basic muscle aches and pains

Since the symptoms are more than similar, I checked to see why we ache when we get the flu.  Essentially, according to a British doctor (http://www.avogel.co.uk/health/immune-system/flu/symptoms/aching-joints), when we get the flu, our systems send our white blood cells to fight with the virus instead of doing their normal day-to-day chore of repairing and rebuilding muscles.  White blood cells also produce more cytokines which is a chemical (often elevated in fibro patients – see Staud in the library) that causes inflammed muscles and joints to fight the flu.

Therefore, I thought I would check to see if fibro patients generally had an elevated white blood cell count, which might account for elevated cytokines and thus pain and swelling, flu-like symptoms, but I’m not finding anything confirming it.  A study by Elmas et al (see library) looked specifically at WBC and found no difference between the fibro group and control group.  They did, however, find a higher platelet count in fibro patients.  That is something I need to look at more because it implicates the spleen.  Elmas et al also suggest that it’s possible that a higher platelet count could be because of a loss of platelet function (due to low adenosine triphosphate levels).

It would be very interesting to see a study on fibro patients where the control group consists of fibro patients whose symptoms are under control and the study group would be fibro patients who are in the midst of fibro flu or a fibro flare. A third level could be a group of non-fibro people.  Another study that would be interesting would be to take fibro patients and run identical tests on them during different stages of fibro and see how the results fluctuate in the same person, if they do at all.

The problem with studying fibro is the varying nature of the problem, not just between patients but within patients.  I’ve never seen a study that adequately addresses that problem.

For the last few days, I’ve been on research study rations.  It is intended to be a diet that would maintain my weight and caloric intake.  Unfortunately, it’s a very generic diet that includes much more fat, sugar, and carbs than I’m used to.  More salt too.  I can see the food pyramid in every meal.  What I’ve found, however, is that I really can’t eat by the food pyramid. Eating fruit with every meal is equivalent to eating any other sugary dessert for me.  Everyone is different.  I only know what I can and can’t eat.  They gave me very potent sugary drinks like grape juice and orange juice – I know it’s normal to drink juices, but they react like any other burst of sugar in my system.  There were Nilla wafers, which yes are yummy, but also loaded with sugar and preservatives. There weren’t enough vegetables, and four meals consisted of Campbell’s Chunky Soup.  I lost two pounds but am incredibly bloated.  I feel weak and queasy.  I have another half day to go.

Today, after eating this restricted diet for three days, I fasted all morning and then drank a large strawberry shake in 10 minutes.  The aim was to draw blood at regular intervals afterwards and track the glucose and insulin levels.  I passed out cold while they were drawing blood.  It wasn’t the blood draw – I’d had dozens up to that point already.  It was drinking a cold sugary shake (with protein powder) after not eating for about 18 hours.  They said my blood probably rushed to my belly too quickly to help with digestion.  I put my tummy in shock.  I’m pretty sure it had to do with not eating properly (although solidly atop the food pyramid) for three days and then shocking my system.

I’ve always resisted going to a dietitian, defying disapproving frowns from healthcare workers when they look at my weight.  I actually eat quite well.  I eat more pasta than I should.  I eat out larger servings than I should.  But when I stick to the diet that I researched (see Be the Boss – Food: the Theory on the main website), I feel good.  I don’t lose weight necessarily, but I feel good, and that’s what’s important.  It’s not a food pyramid.  It’s heavy on protein and vegetables, light on carbs and fat.  Sugar and processed foods are out, greatly reducing glutamate, aspartame, and preservatives, as well as fructose, particularly high fructose corn syrup.  I’m not a perfect eater and I don’t stick to the plan well enough.  But now I know that my eating plan is for sure good (for me, at least), and I don’t have to worry about the food pyramid.  I just slid off the pyramid and landed on my face.