So I’m still intrigued by the idea that the hand can be the key to pain relief for people with fibromyalgia. Avacen 100 is a device that claims to offer whole-body pain relief via muscular relaxation through the hands. While “claims” is the key word and I’m eternally skeptical about miracles, Albrecht et al (see library) has done research since about 2013 looking at arteriovenous shunts in the palm of the hand and noting extra “sensory fibers” in people with fibro. An article on HealthRising.com (see library) indicates that the AV shunts are not working properly in people with fibro. At the same time, I’ve seen announcements that the mystery of fibromyaglia has been solved, and it seems to point back to this same research.

In an effort to start to understand what the heck people are talking about with the hands, I looked at cutaneous blood vessels and a little bit about how they work. And I ran into some old friends: hypothalamus, baroreceptors, cortisol, cholinergic discharges, bradykinin, peptides, and ACE inhibitors, the sympathetic and parasympathetic nervous system. Of course the body is all connected, so it shouldn’t be surprising, but I never connected the hypothalamus to the skin. So I looked a little further at Slomimski et al (see library) and found out that skin cells (epidermal and dermal cells) “produce and respond to classical stress neurotransmitters, neuropeptides, and hormones.” There are a lot of factors that affect how the skin functions, and in turn, how the skin functions affects how the body functions.

What’s remarkable is how many crossovers between the skin and fibromyalgia I’ve found with very little effort. I don’t understand how everything affects everything else, but looking at it like a puzzle, there are a lot of puzzle pieces in common. A lot:

In addition, the same “classical neuroendocrine axes” that drives the production of these molecules echo the same systems that are malfunctioning in people with fibromyalgia:

• hypothalamic -pituitary-adrenal axis
• hypothalamic-thyroid axis
• serotoninergic system
• melatoninergic system
• catecholaminergic system
• opioid and endocannabinoid system

As always, frustration sets in. The pieces are there, but I can’t see the big picture. I can see the patterns or that there are patterns like an elaborate code, but I can’t see how the pieces fit together. Is it ignorance? Brain fog? Fatigue? Am I just too old to figure this all out? Too tired? It’s like not being able to think of that perfect word to describe something, that word on the tip of your tongue teasing your brain.

On a day when I’ve deliberately stayed in bed in order to sleep and rejuvenate after several weeks of running and excitement, I know that I’m too tired and too sore because I’m looking at the easy way out. No, not offing or drugging myself – both are probably counter-productive. I ran into a “medical device” while looking at some research on circulation as it pertains to people with fibromyalgia, and it looks….interesting. Has anyone used an Avacen 100?

Here’s the link: <https://avacen.com/brochures/&gt;

Essentially, from what I can tell, it’s a device that you put your hands in, and it takes away the pain in your body. It doesn’t say it’s a cure for fibro, but it’s supposed to be a drug-free pain reliever. Can I get feedback from anyone?

Lately I’ve been distracted by my own skin. Sometimes it feels like my skin is my whole problem, and if I could just get rid of my skin, I’d feel sooo much better. The people I’m around everyday probably wouldn’t agree and would discourage me from shedding my largest organ.

So what’s with my skin. I think the “white noise” type pain that I feel pretty much 24/7 and which usually comes at low levels (maybe 2 or 3 on the pain scale, 8 or 9 on the relentlessness scale), really stems from my skin. That’s the pain that really drains me of energy. Sometimes if my significant other rubs my back or arms or feet, it feels like my skin is peeling off. I am probably right about being pretty immature for my age because my skin is definitely that of an adolescent – with the wrinkles of a middle-aged woman. I can’t use moisturizers because I break out or the perfume gives me headaches. I can’t use conditioner on my hair or nice shampoos that would make my thin(ning) hair perk up and look glamorous because the chemicals make my scalp break out. I have to use medicated shampoo even though I don’t have a dandruff issue. My skin’s a mess! I’m wondering if it’s a “fibro thing” or if my sensitivities to chemicals is the “fibro thing” or if it’s all just me overreacting to discomfort.

It’s time to start researching again, dive back into my pile of articles that are not quite read. I’m going to start with skin and see if I can figure out any connections. While I’ve been out, there’s been another “breakthrough” for fibro having to do with arteriole-venule shunts, but this is research that actually started at least around 2014. It’s been rediscovered and I think some new information is available. I’m going to start there.  I have an article talking about the shunts and glaborous skin. Don’t ask me what that’s all about, but I’ll find out and let you know. Glaborous skin… I think I have a lot of that.

While I’ve been out gallivanting and doing pretty much everything except writing, I’m very happy to say visits have been continuing in my absence, and from all over the world. I’m very happy to see Turkey join in the conversation, although for every country that joins us, there’s a person in pain.  So… welcome, thank you for joining us, and I’m sorry to see you… All at once.

Hello to a reader from Bangladesh! Glad to have you join us!

The best tool people with fibromyalgia have is choice. We learn right away that we have to make good choices. Sometimes that choice means staying in bed all weekend and binge watch Netflix. Usually it means getting our butts out of bed and going to work. We have to keep a roof over our heads, after all. Usually it means dragging ourselves to family reunions, dreading every minute until we’re there and then realizing how important it was to go, because for a little while the pain can recede while we enjoy seeing the people we love. We choose to flop out of bed to play with our kids or significant others. We choose to say let’s just eat out or fix it yourself, or we crawl into the kitchen and fix it ourselves. The point is, every action we have is a choice, and for people with fibro, very often it’s not an easy choice.

I’m fortunate because I’m still in control of my choices. Not everyone is in control of their choices with fibromyalgia. Their arms and legs just weigh too heavy, their backs ache too much, their fibro flu won’t relent. They miss the reunions, the vacations, the days out, even work, and find it impossible to explain that they just don’t have that control over their choices anymore. The body is a powerful force, and the brain is even more powerful.

For months now, I haven’t managed to clean the bathtub. I have gone to work every day, worked a little in the garden, swam twice a week, and in general lived properly and successfully – outside the home. But I haven’t been able to scrub out the tub and change the curtain.  Yes, it was nasty. This weekend I chose to expend my finite energy to driving to Chicago to see my cousins and help with a fireworks show, something I knew would drain me, knock me off my feet for days (except during work hours – I never miss work), but I couldn’t clean that darn shower. It was a choice I couldn’t bring myself to make. And it’s inexplicable. I can do anything for anyone else, but I can’t clean my own shower because I know it’s going to hurt? Choices…

This morning my alarm starting torturing me at 5:30, and here I sit now at 7:46 in the break room writing this, listening to crappy overhead pop music, knowing it’s okay. I made it to work. I can do this even while the fibro flu creeps in on me, my back aches, my legs weigh approximately 1700 lbs each, and I’m having trouble lifting my arms because of weight and fatigue. I can do this.  I make that choice every day. This weekend I chose fun, knowing I would pay for it. Tomorrow morning, I’ll choose work. My shower – life has turned out so lovely. My one and only Terry cleaned it for me while I was off playing and exhausting myself. He’s a choice too, and a good one. He understands why the shower was filthy and doesn’t judge me. He helps me instead. I’m fortunate – I still control my choices….

Yesterday, someone shared an article on one of the fibromyalgia support group Facebook sites titled, “Is Nerve Damage Affecting the Lungs in Fibromyalgia?” on https://www.healthrising.org/forums/threads/is-nerve-damage-affecting-the-lungs-in-fibromyalgia.4541/.  As a general rule of thumb, I don’t look too far into articles like this one. Its author is some guy named “Cort,” and there is no reference section to say where he’s gotten most of his information.  The article is based on an online survey which depends on self-reporting. In short it’s not too “scientific.”  However, Cort does reference research that I’m aware of and appears in my library, (see Albrecht et al), which is ongoing and very interesting. The particular article he references is one that I need to read, however, and I will.

What caught my attention with this article is the lung aspect. I’ve had trouble with shortness of breath and difficulty taking deep breaths with any sort of physical exercise for years, in particular since my massive pulmonary emboli episode near the turn of the century. At first, it was a scar tissue issue. There was damage from the emboli, and since there were clots in every lobe of both lungs, the damage was widespread. When I was doing the Crossfit Bootcamp, which was an extreme cardio workout twice a week, I could feel improvement in my lung capacity. I could take deeper breaths and catch my breath quicker. By the end of bootcamp I was able to work in my garden without feeling like I was going to pass out.  That was great, but it was temporary.

Before the end of summer, while I was still exercising but in a different program that had less cardio and more weightlifting, my lungs started slipping back into their old habits.  I have not regained the lung capacity I had during and shortly after bootcamp. It amazed me at the time how quickly it all slipped away from me.  It’s like my body requires constant extreme exercise to keep my lungs functional. Swimming has not increased functionality; yoga didn’t either.  I’ve never blamed my lung dysfunctionality – which is not real, by the way, because my lungs test just fine and the doctors are quick to blame deconditioning – on fibromyalgia.  Never connected them. However, if there is something to a dysfunction of blood vessels, which starts the dominoes falling, it would certainly affect lung function. It could also explain the near immediate decline after bootcamp.  It’s something I need to look into further, find other articles and studies that may be looking at this possibility.

In the meantime, it’s also a reminder that it is possible to feel better, but (that big old but) extreme exercise is… well, extreme… and I’m not an athlete. The only reason I made it through bootcamp was because there was a defined timeframe for it. I couldn’t put myself through it indefinitely, which was one of the reasons for failure of the post-bootcamp program I was in. This blog started being all about exercise for fibromyalgia.  I haven’t lost sight of that. There’s a key, but I’m not sure which door it’s supposed to open.

Just wanted to say hi, in case anyone has given up on me.  I haven’t given up my search, but it’s definitely on the back burner at the moment.  At the same time, fibro isn’t on the back burner.  I’m having a heckuva time with my back and legs, but at the same time I’m in just such a good mood.  I’ve started a new job that’s going to be fun and exciting, the man in my life is in my life and we’re planning a commitment ceremony for October, life is just good.  And busy.  I have some ideas that have been swirling around aimlessly but haven’t had time to herd them into a general direction.  Hopefully soon…..

Everyone has a fight or flight response to stress.  It’s what saves us from peril. Our ancestors were able to run from or take down that woolly mammoth because of extra levels of glucocorticoids, catecholamines, growth hormone and prolactin. I wonder if fibromyalgia has developed due to the lack of woolly mammoths in our world. Our bodies give us a woolly mammoth reaction when we really only need a rabid chihuahua reaction. After all, pretty much all of the stress hormones are what are out of whack in fibromyalgia, whatever the cause.  Fibro sufferers should at least be able to lift a Volkswagen whenever we want. Maybe that’s why we’re tired all the time.  We’re always on the woolly mammoth high alert.

Of course, stress comes in all forms.  Today I had to admit to my therapist (yep, I’m in therapy, learning to cope with stress and depression) that happiness was stressing me out a little bit. My fight-or-flight instincts seem to want to kick in even with happiness.  Bizarre, huh? Is it a chemical reaction – these stress hormones being out of whack? Or is it my personal history rearing its ugly head?

I’m now a fiance – not a girlfriend anymore. I’m living with a wonderful person who understands me and is patient and kind, no matter what.  He even understood (although was a bit concerned) when I declared that someone has switched out my microwave.  It’s not my microwave.  I know it’s not.  But he assures me without sarcasm that indeed it’s the same microwave I’ve had since he’s known me. His presence soothes me. I’m happy – people tell me I’m happy, that they can see it in my face. I don’t doubt it because I feel happy. So what the heck are my stress hormones doing to me?

Yes, there is a lot going on – changing jobs (with a promotion), thinking about starting to plan an event in the fall, adding a second household to my tiny house.  It’s all good, it all makes me happy, and I’m severely stressed. Who knew happiness could take so much out of a person?

There is still lingering doubt in some people’s/doctor’s minds about fibromyalgia as a form of mental illness.  After all, stress can bring on a fibro flare, so it must be all in our heads, right?  Thank goodness this way of thinking is falling by the wayside, and research supports very real physiological causes for fibromyalgia (even while they don’t agree on what they are, but one step at a time).  Still, I think a lot of people with fibromyalgia have the idea rubbing on the back of their minds: “Am I in pain because I want to be? Am I exhausted all the time because I’m lazy? Am I looking for attention? Am I just crazy?”  I’ve had all those thoughts over many years.  After all, I’ve met enough people who just look at me with doubt.  The spine doctor who looked at my x-rays and essentially told me I must be a wimp because people usually have much more damage before they have the pain I was complaining about.  The doctor who sent me home when he saw fibromyalgia in my patient chart when I actually had a massive pulmonary embolism. Friends who have just said, well it’s all part of getting older (I apparently started aging at 15). Experience trains us to doubt ourselves.

So now as part of another phase of using myself as a guinea pig, I have begun experimenting with happiness.  Can being happy stop the pain?  My hypothesis, based on the last six months is, no, it won’t, but maybe it will make it more tolerable.

Last week was momentous.  I have decided to share my life and my HOME with someone for the first time since my second divorce in 2000, and he moved in on Saturday, which meant a day of loading and hauling furniture and boxes in the rain.  My tiny house is a mess and may burst at the seams, but it’s all doable…in baby steps.  I’m on day two of a really solid fibro flare that I woke up with yesterday morning.  It’s not sore muscles – I’m very strong and didn’t lift more than I could.  It’s the aching pain of a flu bug without the flu bug – scalp to big toenail.  In addition, last week I finally walked away with a promotion at work into a job that will be exciting and fun.  Lots to learn and new people, even a little travel.  It’s very exciting.

I’m happy.  I’m happy at home for the first time in more than a decade (contentment is not happiness); and I’m happy at work.  Stress, yes, happiness, yes. Possible to have both? Yes. So what will the happiness do for me physically?  We’ll see.