An article titled “Inflammatory Fibromyalgia: Is It Real?” by Metyas et al (see library) took me completely by surprise.  At first I read it because I had a flashback to a certain doctor’s reaction to seeing the fibromyalgia diagnosis on my chart.  His eyes went blank and his whole demeanor yawned.  He no longer took me seriously nor did he intend to.  I was in his office because I couldn’t catch my breath, was having sharp shooting pains in my rib cage, and going downhill quickly.  He wasn’t too interested in the first place – I was his last patient of the day.  But he agreed to do an EKG and take an x-ray of my lungs, neither of which would pick up the massive pulmonary emboli I had in my lungs – blood clots in both lungs, all lobes.  Five days later, I woke up on the bathroom floor, spent a night in the ICU with a clot-buster, then five days in hospital, and a year on warfarin.  The diagnosis on my chart stopped him in his tracks from regarding me as anything but a psychosomatic whiner.  This is what I thought this article was going to be about, the validity of a fibromyalgia diagnosis.  My own defense mechanisms were up high enough that it took a little while for me to realize I wasn’t reading an article like that at all.

Metyas et al look at the possibility of a subset of fibromyalgia patients, a fairly substantial subset, actually.  Some fibromyalgia patients have elevated inflammatory markers, in particular ESR and CRP, and positive ANA and RF.  Yeah, I had to Google… ESR=erythrocyte sedimentation rate; CRP=C-Reactive Protein; ANA=antinuclear antibodies; RF=rheumatoid factor.

One of the major points Metyas et al make is that if there is a substantial subset of patients with abnormal inflammatory markers, then the American College of Rheumatology may need to amend its guidelines for fibromyalgia treatment, since it does not take into account any problems with inflammation.

And here’s where I realize, huh.  It never occurred to me that inflammation was NOT a part of the fibromyalgia process.  Ever since I can remember, pain was accompanied by inflammation.  When my joints hurt the worst, they are stiff and visibly swollen.  I can see inflammation in the soft tissue of my hands and feet in particular, again corresponding with the peak pain times.  I had no idea it wasn’t considered part of the fibromyalgia experience.

Live and learn!  For what it’s worth – I concur wholeheartedly that YES the American College of Rheumatology absolutely needs to take into account inflammation markers, and yes, doctors please consider these as a potential way of treating fibromyalgia.  I’ve asked more than one doctor if there was a way to reduce fluids in the joints to ease up pain: steroids, diuretics, etc.  None have taken me up on it – with my propensity to side effects, that’s probably good, but it’s still an unanswered question in my head.  If I wasn’t so swollen, would I have less pain?

A friend forwarded an article about the connection between arteriole-venous shunts and fibromyalgia (see “Fibromyalgia is not all in your head…” in library).  And I thought – of course! Silly me!  Why didn’t I think of that?  Essentially what the article is talking about is how people with fibromyalgia have more sensory fibers around the arteriole-venous shunts in the palm of the hand.  The arteriole-venous shunts are the little guys that connect arterioles (carrying oxygenated blood) and venules (carrying deoxygenated blood).  With more sensory fibers around the shunts, they malfunction and blood flow is disrupted.  This in turn, after a domino effect, contributes to the hyperactivity of the brain, which stimulates pain mechanisms needlessly.

At first glance it seemed the researchers were saying that the cause of fibromyalgia was in the palm of our hands, but those were just the shunts that they had studied. Other articles about the same research were clear that shunts throughout the body were probably malfunctioning the same as the ones in the hand.

I have to look further, but after a cursory review I’m not finding anything but a brief mention of this potential cause of fibromyalgia in 2014.  There is a strong connection between the study and financial support by medical industry, and the study essentially justifies the use of medications produced by these industry partners.  This does not necessarily make the study suspect or this potential cause out of the realm of possibility, but my eyebrows raise.  The meds that these industry partners produce do not cure fibromyalgia, they relieve the symptoms, so there is a strong conflict of interest.  Of course with the exception of the virus/infection theory, very few of the theories (including this one) seem to have any possibility of cure.  Symptom relief may be the best chance.  And inevitably, one of the meds that is mentioned is one I can’t take.  I haven’t tried the other one…

Last night was another Nanos workout.  We were working on core strength, so there were a bunch of sit-ups and dumbbell planks (not named for the intellectual capacity of the person doing this move).  However, we also jumped rope quite a bit, which is where the actual aerobic portion of the workout came in and, by my own theory, where the fibromyalgia pain fighting starts.

Make no mistake, aerobic conditioning will not cure fibromyalgia (I don’t think), but there are benefits to it that makes it an effective management strategy, and it all boils down to the four main foci for management:

1.  Movement.  Obviously.  You’re moving.  A lot.  It’s not something a lot of people with fibro can do.  However, the more you move, the more you CAN move.
2. Sleep.  Aerobic conditioning helps you sleep.  It would be interesting to look at the role of hormones in terms of sleep post-exercise.  Does releasing hormones during a workout enable the body to release sleep hormones better during sleep?  That may not have made sense…
3. Stress.  A workout absolutely helps release stress, not only mentally but physically too.  In some ways it’s kind of like hitting your head on a wall when you have a headache.  Your focus changes from the headache to the pain of hitting your head on the wall instead.  As warped as it is, you’ve CHOSEN to hit your head on the wall.  Pain/stress you choose is much easier to manage than pain/stress you have no say over.  (I do not advocate hitting your head against the wall).
4. Diet.  Reason would say the more you move the more you need to eat.  Really – no.  I think it’s because the body becomes more efficient with exercise.  Furthermore, there’s something about exercise that dampens cravings.  I’m not saying you’ll never indulge in comfort eating again, but it helps.

So in terms of my current fibro attack, I slept much better last night after the workout, but still woke up tired and wanting to sleep more.  This weekend I’ll work on catching up on sleep and doing some mild at-home exercises.  Fibro sometimes requires a quiet couple of days to recuperate.  That’s what snuggly cats are for, and movies, and a comfy couch….

I’m going to do something I usually never do.  Focus on the pain I’m having.  Did Crossfit Silver Nanos Tuesday night.  It was a good aerobic exercise in general.  I was moving slow but I completed everything, discovered I’m getting better at sit-ups…  However, the fibro attack that was coming on last week is in pretty full force now despite the good aerobic workout.  Last week’s aerobic workout immediately took the pain away, but not this week. This week I’m dealing with both solid fibro pain and solid workout pain.  And yes, I can tell the difference.  I wasn’t sure if I would be able to, but I can.

I can classify the pain I’m having into four categories:

1. Fibro pain – “white noise pain,” an overall, literally head to toe pain.  It almost feels more surface level.  Think of when you were a kid and your brother gave you a snakebite (grabbed your arm with both hands and twisted in opposite directions).  Then think how that pain felt after the initial twist.  That’s kind of how it feels, from scalp to heel.  Another way to think of it is when you have the flu, and you’re pretty sure you’re going to die.  Those flu aches are very similar to this.  On the 1-10 pain scale, this is usually at about 3.  Today it is about a 7.  On the relentlessness scale, it is a 10.
2. Fibro pain – acute, sharp shooting pain. Primarily in the joints but also shoots from joint to joint.  Also random sharp pains, such as on the top of my foot.  No bruises, no injury, no swelling.  Just random pain probably at about a level 8 on the pain scale.  On the relentlessness scale, it’s about a 4.
3. Arthritis – back and knees.  The only way I can tell the difference between the osteoarthritis in my mid back/knees and acute fibro pain is location, and the popping and cracking noises.
4. Workout pain – this is the satisfying pain, even when it’s mixed up with the other pains.  This is primarily in the large muscles of the legs and arms; not nearly as intense, and I know it will go away.  At least until the next workout.  It’s a pain that actually can help me sleep.

I think I’ll track this particular fibro episode, see how long it lasts and what else is going on when it relents.  That means I have to keep diet, exercise, sleep, and stress steady or improved.  Wish me luck.

A troubling development in this possibly ill-conceived search for the origins of fibromyalgia: gray matter.  More specifically, the decrease of gray matter volume in patients who have fibromyalgia.  When I told the doctor I just thought of fibromyalgia as brain damage, I was kidding!  Wasn’t I?  Maybe not…

In an article by Cagnie et al (see library), which I haven’t thoroughly read because the abstract was disturbing enough, researchers look at the literature on fibromyalgia and the brain and sensitization of the central nervous system.  Decrease in gray matter (which, by the way is specific to certain areas of the brain while maintaining overall “global gray matter”), corresponds to increased sensitization.  They also describe an imbalance of the “connectivity within the pain network.”  There’s that nasty “imbalance” word again.

Bottom line – decrease in gray matter in specific areas of the brain corresponds to increase in sensitivity, so our bodies feel more; the functional connectivity of the pain-modulating system is decreased, so our bodies don’t suppress pain; but there is increased activity in the pain “matrix” (central sensitization) – we feel pain that others may not perceive as pain.

Better bottom line – changes in the brain make bad things happen in terms of pain modulation and sensitization.  What causes the change in the brain?

Even better bottom line – brain bad:pain bad.  Bad, bad brain….

I’ve now counted 33 different chemicals, hormones, enzymes, yada yada, that are somehow out of whack in people with fibromyalgia.  Most of the time, we are deficient in whatever chemical it is, and lucky us, that chemical is intricately related to sensitizing us or exacerbating pain.  I’m working on putting a summary together of these chemicals, which I’m sure will have to be updated as I keep reading through sources (see – eventually – the Sorcerer’s Cauldron).

Adjusting levels of some of these elements are reported as helping fibro patients, but very often at the end of a groundbreaking article, it simply says more research is needed.  My bet is that adjusting just a couple of the 33 chem-horm-enz array is either going to be minimally successful or temporarily successful.  I will argue that my system adjusts itself on a regular basis.  When I find something that helps, my body fights back after a matter of weeks and the help becomes minimal again.

In a world of drugs, vitamins, and supplements, we want to adjust these elements to find a solution to the problem.  Instead, I want to find out what is at the origin of the imbalance. So far I’ve counted six different possible triggers of  fibromyalgia, although it is very difficult (so far) to distinguish whether the triggers cause fibro or simply exacerbate the symptoms.  I’m also working on summarizing some of these ideas (see – eventually – Triggers Without Weapons)….  It’s an unending maze.

No, mitochondria.  I’ve swung from an impossibly too simple solution, infection/virus for the origin of fibromyalgia, to theories that sort of block up the brain.  Mitochondria.  The Google definition: “an organelle found in large numbers in most cells, in which the biochemical processes of respiration and energy production occur.”  So we’re talking tiny organs inside cells that when they get messed up they mess up your energy levels and make you oversensitive to innocuous pain.  Little buggers…

I’m still learning about this, but the key word that put me on this path was “oxidative stress.”  Essentially (and any real healthcare professional who knows what they’re talking about, feel free to correct me), antioxidants work in your system to suppress “free radicals.”  Now personally, I’ve always liked free radicals just on principle.  But we’re talking molecules, and these free radicals cause some pretty good havoc, not harmless fun.  When these free radicals run free, all sorts of crap happens.

So adding another dozen or so chemicals, hormones, etc, to the list of imbalance problems in fibro patients for just this one possible solution… it becomes overwhelming.  I’m starting to wonder if fibromaylgia is simply a balance issue.  If our chemicals and hormones were gravity, we’d either be glued to the ground or floating up in the air most days, feet never underfoot.

The key to the mitochondrial issue, it seems, is antioxidants.  However, if all we needed to do was drink power drinks, we could get rid of fibro pretty easily – or at least ease up the symptoms.  I’ll keep working on understanding the 170,000 technical terms spelled with 25 or more letters and see if I can get a better grip on this.

What is promising about this one is the number of studies that have been done, the type of studies, the amount of publications put out, and that this has been studied over a number of years.  That, and it’s satisfying in a really warped way to be able to say, “Hey, back off, I have a mitochondrial disorder.  No, NOT midi-chlorians, MITOCHONDRIA.”

The time has come.  For the first time since starting bootcamp in January, I’m slipping into a fibromyalgia attack.  Considering it has been almost three months without one, I’m doing pretty darn well.  So a checklist – what’s different?

1. Exercise – Silver Nanos is more strengthening than aerobic, but there is still plenty of aerobic involved.  I haven’t missed any days and I do both squats and push-ups at home.  So, I think movement-wise, I’m okay.
2. Diet – a bit of sugar has crept into my diet and I’ve allowed whole wheat spaghetti back in.  Yep, skin breaking out too.  So I’ll rein those two things in and concentrate on the high protein/veggie diet I was on before, leaving carbs for the days I have Nanos and Friday nights when I deserve a treat, by golly (feeling deprived never works).
3. Sleep – I’m sleeping well, about the same, maybe going to sleep a little later.  I’m not waking up refreshed and staying groggy all day.  I’m having hints of dreams where I’m in pain and having difficulty walking, and when I wake I am in pain, which translates into dreams.  Will have to do something about pain management to be sure sleep gets back to restorative.
4. Stress – I’m switching jobs at the beginning of April, so yep there’s some stress there.

That’s the checklist.  Movement, food, sleep, and stress.  I can improve food and go to sleep a little earlier, do some stress management, keep moving.  This too shall pass…

A question has been nagging at me for a long time now.  Who decides what is “normal”?  I know a lot of people who think they’re normal, but their normal is indeed a little bit different from MOST other people’s normals.  Just a hair askew, you know?  When you get the results of a blood test back and everything is “normal,” do you ask, normal in comparison to what?  Is it possible that not everyone’s normal is the same normal?

For example, several years ago, my left ankle looked like an elephant’s ankle.  Or like an elephant stepped on my ankle, but there was no injury.  I went in to the doctor who did an inflammation marker test, which came out at 0.2 above the normal limits.  Technically, I was inflammed!  But the doctor said, no, that’s not high enough to cause concern.  I looked down at my elephant ankle and thought, huh…  Indeed I went to rheumatology who took a giant needle and sucked a heckuva lot of fluid out of my ankle to test for rheumatological disorders, all of which tests came back, you guessed it, normal.  The fluid didn’t return to my ankle.  When they got the fluid out, it stayed out.

So my question is, is it possible that people with fibromyalgia, who all come back with lovely “normal” CBC (complete blood count) panels might need a different normal?  Maybe just because we have a normal thyroid doesn’t mean that we don’t need a thyroid boost?  I’ve counted at least 14 chemicals in our body that may be associated with fibromyalgia – and they’re all at low levels.  Do we simply not process our own chemicals properly and need a boost even ABOVE normal levels?

An abstract by Ortancil, et al, (see library) describes the association between iron levels and fibromyalgia.  They indicate interestingly “even for ferritin in normal ranges.”  In other words, people with fibro may have a normal iron level, but it could still not be enough and mess with serotinin and dopamine production, which when these chemicals are out of whack contribute to pain.

More to think about…..

This week a friend sent a link to an article:  “Epstein-Barr Virus, Chronic Fatigue Syndrome, and Fibromyalgia” (see library).  Very interesting article about how the Epstein-Barr virus is actually responsible for a myriad of mysterious illnesses, including fibromyalgia and chronic fatigue syndrome (which is often closely aligned to fibro).  I did some digging around because it’s intriguing to think that almost 40 years of illness could be attributed to a latent herpes virus, particularly since I have never had any other signs of Epstein-Barr virus (or human herpes virus 4) other than sore and tired muscles.  Never have had canker sores – I was tested for mono when I first started on this journey because of the lack of energy and abundance of sleeping.

I haven’t read everything on the subject, obviously.  But here are some thoughts.

While the doctor who wrote the above article is Anthony William, “Medical Medium,” there are other doctors who have been treating fibro for their patients with antiviral and antibiotic medicines.  One is Dr. William Pridgen who presented an abstract at the American College of Rheumatology last year entitled, “A Combination of Celecoxib and Famciclovir Is Efficacious in the Treatment of Fibromyalgia: Results of a Phase IIa Randomized, Double-Blind, Placebo-Controlled Study” (see library).  Famciclovir is a medicine used to treat herpesviruses.  The results of his study were such that he is proceeding to patent the “proprietary dosage” of this drug combination.  Other physicians are Dr. Dantini (Florida) who has been treating fibro with antivirals since the 1980s and Drs. Lerner, Montoya, and Chia.  There have been studies that indicate that anywhere from 47% to 75% of fibro patients have an active HHV6 infection (herpesvirus).

I’m bothered by this development, but I’m not sure why.  I need to think why.  Is it because it seems too easy?  Can the “cure” for such a complex disease be that simple?  Is it because I know a large percentage of fibromyalgia patients will flock to anyone claiming to have a cure for them, and the person with the “cure” at the moment is withholding information while he patents his process and because of a latent distrust of the pharmaceutical industry?  Is it because he is affiliated only with medical industry rather than a research facility or university and I can see dollar signs jumping frantically?  Is it because celecoxib alone will relieve symptoms?  Is it because I’m snob and I haven’t YET found scholarly articles by Drs. Pridgen or Daniki in the fibromyalgia “literature”?  Is it as simple as his “cure” will not work for me because celecoxib (or Celebrex) is one of the many meds I can’t take?  I will have to keep looking, thinking, reading…