Like anyone with Fibro, I've been struggling to understand what's going on with my body and brain, and of course with the distress that comes with having so many symptoms and watching doctors' eyes go glassy as they're overwhelmed simply by hearing the long list, and can't believe it's possible that much is going on.
Nice quote I saw somewhere not long ago "You know you have fibromyalgia when people say 'you can't possibly have that many symptoms!'" We know we do. We may not know why, but we know they're there and absolutely not "in our heads" (unless of course you count messed up brain chems, and all the other brain-related dealieboppers we have going on!).
It can be frustrating, to say the least.
Fortunately, a whole lot more research has been done as of late, which can help us deal with our doctors, and more importantly, help to feel validated. Validation is one of the most important things to help keep the depression monster away!
If I can fight the fatigue and brain fog enough to do it, I'd like to write a series of informational posts on my bloggy-thing here to try to start putting the pieces together. But for now, since I can't predict how things will be anymore than anyone else here and can't make future plans of any kind, I'd like to put some awareness about a potential co-pilot of the Fibrobeast.
Without getting into it in detail just now, research I've read -and I've read a lot, even though I only absorb a fraction of it- indicates Fibro affects the HPA-axis. Remember this, and look into it on your own if you're able. The HPA-axis (that is, the hypothalamus, pituitary and adrenal) are parts of the endocrine system that regulate all kinds of things that go on in the human body (and mammals in general, for that matter!) When one part of the endocrine system is horked up, it affects the rest of the endocrine system, and in fact how everything else in the body works. That being said, any illness that affects any part of the endocrine system can have a laundry list of symptoms as long as your arm and then some.
One of the oodles of things controlled by the endocrine system, as well as parts that are not part of the endocrine system but are directly affected by it and vice-versa including the pancreas and the liver, is insulin. A whole lot more is involved in the body's regulation of blood sugar. More than I can get into here. Suffice it to say, though, that when part of the glucose regulation is thrown off, it has cascading effects. When the body cannot maintain "homeostasis", or, a "normal" level of glucose, the endocrine system gets into a brawl with itself to try to regulate it. When the blood sugar is too high (or even if some part of the endocrine system _thinks_ the sugar is too high), chemicals are released to lower it, and vice versa.
This results in a blood sugar roller-coaster, with symptoms that roll in and out like the tide. High blood sugar is known as diabetes, whereas low blood sugar is known as hypoglycemia. Not everyone who has hypoglycemia has diabetes, and typically when someone with diabetes has a hypoglycemic um... thing... episode isn't really the right word... anyhow... it usually has to do with too much of the artificial insulin diabetics are required to inject to keep the blood sugar from going too high.
Still with me? :)
When the endocrine system is overtaxed for long periods of time (such as the severe and/or long-term distress that seems to be a probable trigger for the fibrobeast), it changes how it reacts to things. These changes can be permanent. Studies I've read (I'm sorry I can't cite them right now. I'll try to at least put a list together. I've been trying to research this every good brain moment I get for many moons now) seem to indicate that these changes can be especially significant and more likely permanent if induced during childhood. After the endocrine secretions have played the shell game long enough during stress, and then the stress is finally relieved, it doesn't really know how to handle itself anymore. Purely observational, but it _seems_ fibro often rears its ugly head after a serious stressor in adulthood has passed, and things are finally calm once more. That's how it was with me, and I've read others who've said similar.
To get back to where I was going with this (gosh it helps to be typing so I can re-read, 'cause I'd have to ask someone to remind me if I were talking out loud. Ha!), it seems parts of the endocrine system fall into bed and take a nap, so to speak, just like we have to do when we've done too much (which can take very little a lot of the time!), and though they're still working, they're in granny-gear, so to speak. If the hypothalamus is overtaxed, it affects all the other little doohickeys connected. It's kind of like the CPU of the body's chemical um... thingy... it tells the endocrine system (and probably other parts) when to release what chemical(s) and how much.
I can't explain it adequately yet (it has to do with stress hormone regulation), but long term and/or extreme stress can have a huge negative effect on the adrenal cortex (amongst other endocrine and non-endocrine bits, of course). There's finally been some study on some of the adrenal stuff as it relates to fibromyalgia -which is, in my opinion, a really stupid and non-descriptive name of our overall illness! But I digress ;) - The adrenal glands control Cortisol (a stress hormone), DHEA (the most abundant, yet possibly least understood chem in the adrenal cortex), Aldosterone (if aldosterone production is low, body doesn't handle salt right, and you wind up with too little of it, which, among other things, makes your eyes sensitive to light, because the pupils can't stay little. Salt is required for pupils to contract properly. Remember that. It might be helpful someday.), and also produces a small amount of testosterone and estrogen (which is probably why people can have their other testosterone or estrogen producing bits removed without as serious a repercussion as might be expected).
Let's narrow our field a little here and look a little closer at one of these chemicals. Cortisol. Though more research needs to be done, it seems there is at the very minimum a prevalence of low cortisol levels in those of us with fibromyalgia. That makes sense, since we seem to have a ton of symptoms that indicate, amongst other things, an underactive adrenal cortex.
Cortisol is responsible for several important functions, including (but not limited to) blood pressure regulation (low cortisol = low blood pressure), inflammation response (low cortisol = more inflammation), and glucose levels (low cortisol = low glucose). Cortisol regulates a ton of other things, too, and if you look into it, you may notice how descriptive inadequate cortisol is of a lot of the symptoms we suffer. Bear in mind while you're looking, you'll find things about Addison's. That's when the adrenals are pretty well or entirely croaked. That's not the case for us (something to be thankful for!). It seems they're just very tired all the time, and they can't do as much as the used to. Sound familiar?
So, since research shows we have low cortisol (here's the link to one of many studies that've shown this: http://www.ncbi.nlm.nih.gov/pubmed/20458566 ), and low cortisol is directly linked to low blood sugar, it stands to reason that the worse our fibro is overall, the more likely we are to also have hypoglycemia. Because of all the confounding symptoms and symptom co-pilots, though, there's an extremely good chance that we wouldn't have any idea we have hypoglycemia in the mix.
This was the case for me. I'd had hypoglycemia as a kid, due to stress. When I was 16 and no longer at home, the stress levels went down, and the symptoms seemed to have subsided or gone away. I went to the hospital lab dealey to have the long glucose tolerance test done to be sure, and it came up negative for hypoglycemia and diabetes. I put it out of my mind entirely until recently. Unfortunately, I shouldn't have, and now realize I've been having unrecognized hypoglycemic episodes of moderate and borderline severe levels for years. Long before the fibro got bad enough to force me to start seeing docs and so forth. This means my cortisol levels have likely been low since I was a kid, which in turn means my adrenal cortex has likely been having trouble for equally as long.
As it turns out, that glucose tolerance test I had done typically will not show any signs of either functional or reactive hypoglycemia. Good info on that bit and more here: http://www.hypoglycemia.asn.au/2011/testing-for-hypoglycemia-and-how-your-doctor-can-help/ . That means the test that I took had me misinformed, and meant I've gone many, many years with recurrent moderate hypoglycemia.
I started considering the possibility of the hypoglycemia continuing to affect me all these years later a few days ago, when I was trying to find any information on what in the world might be causing the low blood pressure, fast pulse and electric shock sensation I get throughout my body sometimes. I'd asked my PCP about the electric shock thing, and she attributed it to the fibro, but didn't go into detail. I couldn't tell you quite how the threads came together on this one, but first I found something about this happening in menopause (I'm 38, but am starting to have signs of pre-menopause at this point), and looked into the possible hormonal causes behind that, and _somehow_ ran into something similar with hypoglycemia. Light started to dimly flicker in the back of my mind... could I still have it, or could it have returned and I just don't know? I'd already read about the low cortisol with fibro. As I read on about the hypoglycemia, I learned that low cortisol is also directly associated with hypoglycemia. But I still didn't know...
Then yesterday, I had the electric zaps, and thought to check my pulse and blood pressure. Blood pressure was 104/75. Pulse was 130. I'd had some serious stressors that day... and the day before... and the day before... ahem, anyway, stress affects us and makes our symptoms worse. We know that it does, even if we don't know how/why. If I had a lab, I'd be my own guinea pig and try to figure out more, but I've got a blood pressure monitor, so that's what I looked at, and that's the info I got at the time. That was actually when I started looking into the electric zap/shock thing again. I had some more stress/distress added to the mix while I was searching, and had a real good (bad!) crash. My emotions were completely out of control, and all kinds of negativity came flooding out. I screamed. I cried. I was filled with a very toxic combination of rage and depression. I was thinking anything but clearly.
I started writing because I didn't know what else to do. I let the emotions flow out like a dam had broken. I also sipped some sugared coffee as I wrote. An hour or so into it, rant-writing and sipping sugared coffee, my mind started to clear just a bit. Enough for what I'd recently learned to click. Enough to remember I have a glucose meter I'd bought to have on hand for a friend who'd been having trouble keeping their diabetes under control. I would love to have known how low it had actually gotten before I'd unknowingly self-medicated for it, but when I tested it, it was still fairly low, only reading 72.
I want to take a moment at this point to thank a couple of dear folks here who were very kind and helped me through this more than they can ever know. You know who you are. Thank you!
So that's when I realized that I almost definitely either still have hypoglycemia after all these years, or that it's back. Now I have an idea of what to look for, and what it is that my dog is really telling me when she comes up and slobbers my face when I'm feeling extra super duper down. She's telling me to check my blood sugar. She alerts to panic attacks and such, and with this link, even if I don't realize what's going on, she'll tell me. I just have to have the wherewithal to realize it, and I'm much more likely to do so with this new knowledge.
On another note, I've had severe brainfog attacks over the past year or so. Not just what I consider my normal "what did I get up for?" or "why was I in this room?" or "did I turn off the water?", but very serious, to the point I probably should've gone to the hospital, but am too stubborn (or stupid... fine line! :p ). I've had times where my speech is slow and slurred, but with no drooping anything and no numb anything. Had I had the latter, too, I would've convinced myself to go, but I didn't. Come to find out, that's something that can happen with moderate hypoglycemia. I've felt my mind absolutely slipping. Like I've got intermittent Alzheimer's or something. Usually it's not happening when I'm at the doc's office, of course (like the car rattle that stops magically at the mechanic's... grrr), but it has happened a couple of times, and I was promptly referred to a head shrink... to which I didn't go. I know something is happening in my brain and body that's causing this (and other things), and while there may be psychological symptoms, psychology is NOT the cause. I'm sure of it. I've been sure of it, and I'm even more sure now than ever.
I've felt for a long time like something is hurting my brain, over and over, a little at a time. I know that may sound silly or loopy, but who knows our bodies better than ourselves? Even if we don't know the medical mumbo jumbo, we still will crave a specific food if there's something in it we need, without having any doctor telling us we're low in such and such vitamin or mineral, for instance.
My memory and overall cognitive ability has gotten progressively worse. Some times are better than others (and I have to do things like this at the better times whenever possible!), but working memory and other parts of my memory seem to be slowly degrading outside the regular brain fog moments. I don't have to have a doctor who doesn't know how I used to be able to function because he/she hasn't known me long enough to recognize it confirm it for me. It does help to have someone who has known me for several years see and recognize it, though (thanks to my other half!).
Now I've found something that may help explain this, but I'm not happy with it. I need more info. I always need more info. Ha! Anyway: "Although mild or moderate hypoglycemia is not life-threatening, if recurrent, it may cause cognitive impairment." is a quote from one study that was done that helps confirm what I already knew but didn't understand and couldn't explain (almost said couldn't complain LOL). That article is brief, and I'd like to see the specifics and more studies, but if you'd like to look, you'll find it here: http://www.ncbi.nlm.nih.gov/pubmed/22830525 .
I'm positive there's more to what's happening here. There always is. But this is a start.
Now, if you're having a good brain day and managed to read through all of this, first of all, thank you and congrats. Not easy to read a lot of the time, especially long-winded and technical jargon stuff.
Secondly though, does any of this seem to ring true with you? Do you have hypoglycemia or have you had times that came to mind while reading about it that could be? I was lucky to have a glucose monitor handy so that when it finally dawned on me to check. I don't imagine many folks have one just laying around like that.
Thirdly, has anyone ever had their cortisol levels tested? What about other chems?
Our best weapon to fend off the worst the fibrobeast has to offer is knowledge, and our best allies are those who support us (including one another!).
Thank you for reading. Gentle hugs to all! <3
(putting this in the General category, because I'm not quite sure where it fits. Feel free to move. Please don't delete without sending me a copy, if for any reason it needs to be deleted. Thank you! <3 )