There are a lot of stereotypes connected to people with fibromyalgia or any chronic pain disorder. I don’t care about what people think of me on the whole. I’m doing the best I can, I’m employed, paying taxes, not getting featured on reality TV shows. But I do go home from work and lay down. I don’t spring out of bed in the morning. Housecleaning is just about last on my list of things to expend my very finite allotment of energy on, so my house is messy, but not infectious. I make very specific choices about what I’m going to do and when I’m going to do it because every time I do something, I am sacrificing something else. I don’t have the energy to do everything. I don’t have the energy to do half of what I would like to do. In my down times, my regeneration times, those stereotypes that I’m so sensitive about creep up. Lazy. That’s the worst one. I didn’t get out of bed on Saturday until 2:00 PM. I needed it to be able to rejuvenate, but that word “lazy” hissed through my brain. And I was telling myself I was lazy. I was stereotyping myself. When I judge myself, whether because of my own spontaneous negative thoughts or because of an offhand comment from someone I love, no matter how much I try to rejuvenate, it doesn’t happen.  I can lay in bed all day for a week and energy just saps right out of me as soon as that word “lazy” starts to play hide and seek.

My therapist – yep, I have one, and I highly recommend it – once told me I had to be kinder to myself. I have to treat myself the way I treat other people, the way I want other people to treat me. I struggle with that every day. I make a mistake and condemn myself as stupid. I can’t do dishes when I get home from work and I condemn myself as lazy. That’s the voice that bothers me. My own stereotyping of myself.

Pretty soon I freeze up and stop functioning completely, except to go to work. Work isn’t a choice. It’s a necessity. Gotta earn the kitty litter.

I know what I have to do to feel better. Feeling “good” is probably out of the question, but I can feel better. I know what I have to do. I KNOW what I have to do. I’m not going to list the things I need to do to feel better. Those things are already on this site. The problem is the freeze. I can’t move, I can’t focus, I can’t be enthusiastic, I can’t push myself.

Has anyone ever had sleep paralysis? It’s scary. You wake up and you can’t move. Your eyes will open, but your arms and legs don’t move. You’re paralyzed, frozen in place. This has happened to me several times in the past. It’s scary, but it wears off after awhile. What I found can break the “spell” is to move just my little finger or to wiggle my toe. It’s like that one tiniest of motion allowed the rest of my muscles to let go of their position. It took concentration and determination to make that tiniest of motion, but it worked.

That’s where I am right now, willing my little finger to move. If I can move my little finger, maybe all the other things will fall into place. I’ll do everything I need to do to feel better. Then I’ll be able to move, focus, be enthusiastic, push myself further. I just need that tiniest of movement first. I’ll get there. Step 1 is acknowledging the stage I’m in. I’m acknowledging I’m frozen. The longer I stay like this, the harder it will be to feel better. Step 2 – come on little finger….

Next week, for the third time, I’m getting “married.” The quotation marks are because we’re having a commitment ceremony rather than a wedding. No judge, no minister, no marriage license, just us with a bunch of close friends and family, making a commitment to be together through thick and thin. It’s been called our not-a-wedding or our mock-wedding, but it is a serious deal for both of us. It’s my significant other’s third “marriage” too. Collectively that makes SIX marriages. Am I nervous? Hell yeah – I’m not stupid. The problem is, my nervousness doesn’t just hit my sparkling personality and turn me into a cranky curmudgeon. It also hits my joints, my muscles, my brain, and all the soft tissue in between.

My significant other, (I’ll call him Terry) was very lightly rubbing my arm the other day. It felt like he was rubbing the skin off. I’m in pain at rest, I’m in pain when I move. The only position I can hold for longer than a few minutes without everything clenching up and screaming is laying on my back, and then the back of my head starts to hurt because it’s touching the pillow. I won’t mention what’s happening to my skin. Mornings are dreadful – sleep is a nightmare. I’m gaining weight, I can’t get myself into the gym, the only time I’m comfortable with food is when I’m NOT eating. Above all, I’m exhausted from just staying upright.

The thing is, I can’t blame all this on the upcoming virtual nuptials. I want to do this. It’s going to be fun and the party is all planned out. Terry really is the person I want to spend time with – he’s sweet and kind. I don’t have cold feet. I have sore feet. Instead, I think a few things are happening all at the same time creating this “fibro storm” – a term Terry came up with:

1. The commitment ceremony – I’m not a natural born hostess. I never give parties. I don’t like being the center of attention. What was I thinking? The pressure of being in charge of making sure people have a good time is FAR more stressful than telling Terry I do.
2. Financials – we’re not dripping in money, and we are not spending a fortune on the commitment ceremony. But there is work we need to have done on the house, and it’s going to be costly. I just had to start making car payments again – leased a new car, so the stress of driving an old beater 2 hours a day is gone, but I have to make the payments… With two of us in my little house, bills are going up up up…
3. Job – I am loving my new job, but my mentor is going to be retiring in two weeks! I spend a lot of the day with the thought, “don’t screw up” in my head.
4. Puppy love – in the midst of everything, we got a puppy. My cats aren’t particularly happy, but Lady, a sweet little hyper Springer, is pretty irresistible. She’s learning well and quickly, but she has the sharpest teeth I’ve ever encountered, and with the extreme sensitivity I’m experiencing, she’s torturing me.

The puppy is our first real challenge as a couple. Can Terry put up with me hiding from her little razor sharp teeth? Will he continue getting up in the middle of the night with her so I can sleep as best I can right now? Sleep is critical at this point. Will he understand when I come home and crawl into pajamas that I just can’t do any more? Not the kind of stress I wanted just before the commitment ceremony, but hopefully we can make it through.

The final stressor is just flat out fear. I don’t want to fail at happiness and companionship again. I’ve made a good and smart choice with Terry. I believe in him and his ability and willingness to be an “us.” But as much as I’ve dealt with past disasters, there’s no stopping that little Freddy Krueger voice in my head, “No screaming while the bus is in motion!”

A plan of action for myself to crawl out of this fibro storm. First, breathing is important. I know I’m not taking deep cleansing breaths right now. I’ve caught myself not breathing at all. I’m short of breath all the time, even just walking across the room. So plan A – BREATHE. Close my office door and do deep breathing exercises. Be mindful (that favorite word) of when I’m not breathing at all. Try to consciously push the oxygen through my system. Breathe into my stress. Breathe to the bottom of my lungs. Exhale bad emotions and stress. Remember at the heart of fibro is the possibility of dysfunctional circulation. Not breathing isn’t going to help that any.

I’ll move onto plan B when I get a grip on plan A….

I’m still amazed when I see my posts go around the world. It’s a reminder always that no matter where we’re from we live in common. Thank you for having a look.

In light of the latest I’ve been reading about the possible underlying causes of fibromyalgia, I thought it might be a good idea to do a quick inventory. The reason is because I really like the Katz et al and Albrecht et al research – dysfunctional blood flow, dysfunctional arteriole-venule shunts – and I’d like to pinpoint possible pain management focusing on the idea that I will feel better if I can just get my blood flowing properly. I want to go from hypoperfusion to a solid perfusion. Then my body will get the nutrients/hormones circulating that I need, it would help my body eliminate waste/toxins, rejuvenate tired muscles, maybe even help with brain fog. It explains the wide variety of symptoms and signs of fibromyalgia and many, many of the problems that fibro causes falls under that umbrella.

So the new experiment: Focus on breathing and breath.

The current state of affairs as of October 1, 2017:

1. Scalp hurts. I’m broken out, but my scalp hurts just laying still without touching the broken out areas.
2. Low grade headache for several days. Pain scale: 4; Relentlessness scale: 8
3. Ears still uncomfortable – pain/itching in my right ear; a slight return of tinnitus/numbness in my left ear
4. Neck – pain and stiffness, including pain/discomfort in my throat that makes it difficult to breathe when I’m laying down. CPAP helps with sleep.
5. Shoulders, elbows, wrists, hands – sore at rest and worse with movement. Muscle fatigue in upper arms. Pain scale: 7; Relentlessness scale: 9
6. Chest – constant tickle, regular cough, remnants of sinus infection/cold
7. Abdomen – sore at rest and worse with movement. Deep pain but not connected with anything. A little like a mild kidney stone, mostly on the right side. Pain scale: 6; Relentlessness scale: 9.5
8. Hips and legs – shooting pain. Bursitis flare. Tender to the touch, sore at rest, painful with movement. Muscle fatigue in upper leg muscles. Pain scale: 8; Relentlessness scale: 8
9. Ankles and feet. Not too bad. Pain scale 3; Relentlessness scale: 4
10. Overall “white noise” pain: 7; relentlessness scale: 9
11. Difficulty with balance – I’ve been tottering all day. Mild occasional lightheadedness.
12. Brain fog, difficulty concentrating on most anything
13. Eyesight is unreliable. None of my glasses are working properly.
14. Mood is very good.

I am the heaviest I’ve ever been in my life, in the most pain I’ve ever been, on both the pain scale and relentlessness scale. At the same time, I have landed in a job that I’m really loving, I’m with a person I love, that person loves me. I’m happy. So I can definitively say (again) happiness does not cure fibromyalgia.

Plan of action:

1. Deep breathing exercises when pain scales go up
2. Daily stretching
3. Walking at work – or ride exercise bike
4. Swim again (after my ear is healed)
5. Restart supplements. I can’t take a multivitamin – C, D, B complex, calcium, fish oil
6. Find yoga and t’ai chi DVDs
7. Sleep/rest appropriately

I’m having a very difficult time moving, so the first thing I need to do is start the supplements and see if that helps with energy. Secondly, I’ll start deep breathing immediately (did earlier today, and it helped, kind of like Lamaze). Third is sleep/rest. I’ve been running too much lately and need to slow down. Fourth is exercise at least twice a week, preferably a walk each day. Walking is not reliable and hurts my back, so I’ll need to get into the gym on a more consistent basis.

I’ll keep looking for any ideas in terms of what medications can help with pumping blood, repairing shunts? I have no idea, but I’ll look. Personally, I think this fibro explanation also accounts for why opioids don’t work, why meds are unreliable. But I’ll look.

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.