Theories abound about the root cause of fibromyalgia. I would say the biggest stumbling block to being able to provide reliable relief or even (dare I say it?) a cure is the inability to identify what fibromyalgia is and what actually causes it, and so the focus with research has been really characterizing it instead. Characterizing or describing fibromyalgia seems to be useful more for finding ways to chase symptoms rather than deal with fibro as one cohesive underlying condition, which (I think) would lend itself toward a solution to the problem – chasing symptoms is not a solution.

So I was drawn to an article by Katz et al (see library) titled, “The pain of fibromyalgia syndrome is due to muscle hypoperfusion induced by regional vasomotor dysregulation.” The sheer audacity of saying outright, “here is the cause” of fibro pain! Who cares what they’re talking about – they’re saying they know the underlying cause for fibro pain, which then in my mind also reveals the underlying cause for the debilitating fatigue and brain fog, and who knows what else.

The remarkable thing about this article is that it acknowledges pretty much all the other theories about a root cause for fibro pain as well as many of the therapies that have been suggested or are being used and is able to pull all of these together into one cohesive theory. They don’t leave out or dispute other inconvenient theories so they don’t have deal with them. And they do it without simplifying the problem.

In a nutshell: people with fibromyalgia don’t have good blood flow throughout their bodies (muscle hypoperfusion). In order to relieve the pain of fibro, blood vessels need to open up and let the blood throughout better. That would not only circulate nutrients throughout the body – many of which are noted as at low levels in fibro patients – it also allows for proper removal of “waste products” from the body. In other words, we’re not getting enough of what we need and we’re not getting rid of what we need to get rid of, which is maybe why sometimes I feel almost toxic. All this is “induced by vasomotor dysregulation in discrete vascular beds” which means our blood vessels are not dilating or constricting properly. This would also account for why we have problems regulating our body temperature, but importantly it explains why, to the frustration of doctors and patients alike, all our blood tests have that pesky tendency to come back NORMAL and then we become just them crazy hypochondriacs.

Katz et al point out that “metabolic deficiencies are not consistently seen in serum sampling” – our blood work is normal – “…there is not a fundamental deficiency in these metabolites in FMS patients, rather their delivery is compromised [emphasis added].” We’re not at low levels, our “normal range” is not a different normal, we’re just not circulating!

So much of this makes sense. It explains why the extreme aerobic exercises I was doing when I started this quest worked so well – because it got my blood pumping. It didn’t necessarily cause more of the stuff I wasn’t getting to be produced – it was allowing my body to circulate and utilize what I had better. It explains why, when I digress from exercise I lose every inch of ground I gained by exercising quickly and indisputably.

The bad news: this article was published in 2007. It was accepted for publication in 2005. It’s 10 years old. There has been research building off this research – talking about the glabrous skin and shunts and all that, which leads to the Avacen 100 and the machine that makes the blood circulate and everything feel better.

The other bad news: if this research is correct, a “cure” as such is not in sight. But chasing symptoms could be at an end. Exercise exercise exercise. I really don’t enjoy exercising… Why can’t chasing symptoms be considered aerobic activity?

I have a new word: glabrous. It just means smooth, not hairy or fuzzy. So the skin on the palm of your hand is glabrous. Before I was so rudely interrupted by my left ear, I was reading about a study Albrecht et al (see library) has performed looking at arteriole-venule shunts in the palms of the hands of fibromyalgia patients compared to healthy control subjects. It seems so random, doesn’t it?

Essentially, they biopsied the palm of patients’ hands to look at innervation – how the nerves work in that area. Really, from what I can tell (until I go to medical school), they used the palm of the hand as a microcosm of the rest of the body, assuming the rest of the body is set up sort of the same way. The palm is a “major site of convergence for dense sympathetic and sensory innervation,” and thus could reflect what happens elsewhere. It’s not much of a surprise, but fibromyalgia patients showed excessive sensory innervation in the palm of their hands. The researchers think perhaps this could be a cause of severe pain and tenderness in the hands of fibro patients. Taking it one step further then, maybe the skin on the heels of the feet (also glabrous) has the same thing going on and thus my feet hurt so much all the time. Elbow skin is glabrous, I think, they could check it out there too. My elbows hurt all the time.

There’s more too it, however, when you look at what functions the skin actually has, and the article by Albrecht et al is pretty complex. I was surprised to see a mention of substance P in this context. Substance P is a mysterious…thing…which levels are elevated in people with fibro, and it is partly regulated in the skin. Just boiling down because there are a lot of Greek symbols, “mechanoreceptive, metaboreceptive, thermoreceptive, and various nociceptive capabilities” are connected in this whole system, which they looked at from the palm of the hand. That is, muscles, metabolism, temperature regulation, and pain stemming from nerve cells are affected by how these little shunts that go between arterioles and venules work, how many they are, etc.

That sounds pretty significant. Perhaps more significant is: “Conceivably, the neuropathology of the AVS could result in insufficient blood flow and ischemia in deep tissues like skeletal muscles, which may contribute to the widespread deep pain and fatigue of FM, and cause compromised circadian blood flow regulation thereby impacting sleep and cognition.” In other words, if what’s happening in the palms of your hands is messed up it can affect blood flow to vital organs like the heart and brain and break the natural 24-hour cycle – which accounts for sleep difficulties.

So in the palms of our hands we have muscle pain, weight gain (metabolism), body temperature, generalized pain from nerve cells, sleep disruption, and brain fog. In addition, some of (not sure how many) the imbalances in chemicals and hormones can be tracked right back to how the skin functions.

The good news is while this research was published in 2013, it is ongoing. There is more to read, and new developments.

I’ve started on oral prednisone to accompany the steroid injections they have done and will be doing in my left ear in the hope of recovering some hearing. I’ve always said, if something will help me feel better without killing me or destroying my brain function, I’m going to try it. I’ve had prednisone before, and it does help with pain on a very minimal scale. The side effects, however, far outweigh the benefits, so for fibro, I’ve eliminated that as a possibility for treatment. However, I have to try it for my suddenly non-functional ear.

I waited a day so that I could start it in the morning rather than the afternoon, and I wanted to see how the injected steroid would work, if at all. I noticed an improvement by the end of the day yesterday. It’s not vast, and part of it could be me getting used to my next audio-reality, but I think it’s better. I’m hopeful enough that this morning I started the prednisone. Within an hour, I was jittery and I was covered in a cold sweat – 5 hours later, only sweating more. Even as I eat lunch, I feel like I need more food to stop the jitters. This is on a half dose with the option of cutting the half dose in half yet again. The doctor thoughtfully prescribed 10 mg pills so I can play around a little with the dosage. Essentially, just getting a bit in me to help boost whatever the injected steroid does could help my hearing. I’m going to stick with it for the next ten days, even if I reduce the dose immediately, just in the hopes of it contributing to restoration of even some hearing.

This is the same decision making process I’ve had to use for pain medication and anything else that’s been suggested for fibro. I’m on absolutely nothing right now, simply because the risks have outweighed the benefits. Choosing nothing means coping with pain that could be eased, if I trade off concentration, thinking, or controlling all my muscles. It means being a bit more tired throughout the day because relentless pain causes fatigue, at least for me. It means being accidentally cranky on bad days. But it’s my choice. The pain is not my choice. Hearing loss is not my choice. My choice is how I cope with the problems that come up. Today that means choosing discomfort, but only for 10 days. If I choose pain meds, it would be for a lot longer than 10 days. I’m in control of my own destiny. Seizing that control viciously and hanging on tenaciously is the best remedy.

I know I started this blog so that I could document and catalog my personal experience with fibromyalgia, as well as track the research I’ve been reading, hoping to share what research is getting done and what direction treatment options are going, yada yada yada.  I am forced to admit, however, that I’m getting tired of having something new to talk about. But here I am… Hearing loss. Not tinnitus – I’ve had that going for years. This is sudden hearing loss. I woke up Sunday morning without a left ear. I didn’t do a Rembrandt. It’s still attached to my head, but it’s not functioning. It’s not a problem with fluid or wax build up. It’s sensory neural hearing loss. Except for a 30% chance of improvement with the use of steroids (I’m being aggressive and getting both injections and taking oral steroids), the hearing is gone, with the exception of static. My stereo’s broken… A very very quick look indicates some research that people with fibro are more likely to have hearing loss. I have to read more, however. I’ve only really ever read about tinnitus. The study I found, however, is from 2016, so very recent. We’ll see.  In the meantime, for once in my life, please let the steroid do what it’s got a 30% chance of doing? I really don’t like the whole mono sound…  More later.

When you’re on a long flight, you’re usually told to move your feet, bend your ankles, point and flex your toes. The reason is because extended periods of sitting in a cramped area without moving can lead to blood clots, which if they develop in the right place, namely deep veins, can swoosh that blood clot right up to your heart and plunk, no more frequent flyer miles. Of course, you can throw clots from your heart into your lungs, or the clots can just hit your lungs and become a pulmonary embolism. Or they can just stubbornly sit in your legs and be deep vein thromboses (DVTs). Either way, if your blood doesn’t flow, it tends to coagulate and clot. That’s not a bad thing. If you’ve ever seen Suicide Kings, you’ll know what happens when you drink too much and you don’t clot anymore – yep a bunch of misdirected, rich, young punks could cut off your finger.

I’m tired. I’m very tired. When I’m tired, my brain spins and I cling to free association. I beg your indulgence.

Going back to clots. Clotting is one problem that people with fibromyalgia have reported, although I’m not sure how widespread it is. I’ve had a couple clots in my legs, both superficial and deep vein. I’ve had a massive pulmonary embolism that my physicians referred to as my “near-fatal episode” until I told them to stop. I’ve chalked up these episodes to my tendency to overreact to vitamin K, which swings my INR (a measure of the body’s clotting ability) too low and I clot too quickly and easily, and an equal overreaction to warfarin, which swings my INR too high and I become at risk for bleeding. So even eating too many greens, broccoli, etc, which is rich in vitamin C could make me clot, and then countering a clot with warfarin could make me bleed out. My usual damned if I do, damned if I don’t scenario.

What I’m getting at, however, is looking at blood flow/circulation and the way it MAY not be quite right in people with fibromyalgia makes me wonder if the arteriovenule shunts that are not quite right could be the cause of this particular side effect in some people with fibro?

If so, maybe again that’s why exercise is so helpful, because it gets the blood flowing. So while I’m sitting at my desk counting the minutes draining from my life because I sit for 8 hours a day, I’ll point and flex my toes and bend my ankles and fidget and pretend I’m on a long flight over the Pacific Ocean. That I can do, and maybe it will help me circulate properly. If I’m not circulating properly. I don’t know if I’m circulating properly. Could be. Could be not. Dunno. My hands are freezing cold today. Good thing I prefer to be chilly.

Okay, so I think I have this figured out on a very, very elementary basis.

• Research indicates that people with fibro have too many or dysfunctional arteriole-venule shunts in their hands.
• This means that blood flow in people with fibro is not top notch.
• A diminished blood flow and faulty shunts cause problems with maintaining body temperature.

These things I understand. Basically shunts open and close to increase or decrease blood flow in the epidermis to warm up or cool off. It’s why people have cold hands or warm hands.

However, when I look at blood flow and fibromyalgia together, what comes up the most is in relation to blood flow in the brain. So that got my possibly non-perfused brain thinking.

• If the defective shunts in the hands of fibro patients carry through the rest of the epidermis and the rest of the body, then the theory is this is what causes the chronic pain of fibromyalgia.
• Blood flow definitely can be the cause for the lack of body temperature regulation.
• There are a bunch of chemicals and hormones that are transported in the vasculature system and many of them are out of balance in fibro patients.
• Maybe, then, the chemicals and hormones that are out of balance in fibro patients are just not circulating. I’ve thought about the idea of different “normal” levels for different people, but maybe the levels are okay – they’re just not getting to the right place?
• Also, could faulty shunts cause the swelling I’m constantly fighting in my hands and feet? Could it be why when my hands get cold they don’t warm up? Or why I can’t cool down if my hands and feet are swollen?
• Could brain fog be connected to blood flow? There are several studies I found that may relate to this. Have to get reading.
• Eyesight is an issue, but my poor eyesight varies from day to day. Could the inconsistencies I struggle with in my eyesight relate to how well my blood is circulating?
• Could this explain why exercise – in particular vigorous exercise – helps with pain? Not necessarily because levels of these critical hormones and chemicals are raising, but maybe because they’re actually circulating?

It’s something to read more about, and I have a new pile of research to read through. In the meantime, I have to start exercising again. I’ve been off for a couple months, and my pain levels are beyond high, my fatigue levels are to the point of nodding off at my desk, and my sleep is completely disrupted. So next week, I get back down to work. Summer is over. I am entirely responsible for how I feel. Time to get back to some semblance of responsibility.

As for Avacen 100 (Advanced Vascular Circulation Enhancement), if I had $2000 to burn, I’d try it, even though it reminds me of the “miracle cures” of the 1800s. Instead, I need to stick to the tried and true, exercise, diet, and sleep.